PROMISING TO FRUSTRATING!!

There are some strange events happening in the MS world with regards to CCSVI, it seems that somehow the brakes have been slammed on! Something that started off with so much promise and excitement has now ground to a halt and there are certain elements of this deliberate slow down that appear to be very suspicious and disappointing. To begin with I decided to try a different number to the U of A radiology department since the previous contact number has been ignored. I found out that there is no study in the works and the information that Dr. Emery was starting a study in concert with Dr. Haacke was false from the beginning. When I contacted his office back in November they did seem kind of clued out but took my name and number so they could call me when the study was figured out. Maybe it was a mistake to include Emery in the list of participants on ms-mri.com but either way the huge amount of interest that it has generated might make you think they’d set up the study anyway…not going to happen right now.

Next I found out that Dr. Zamboni is now prevented from performing the Liberation procedure in Italy. A new study will be started but in the mean time there is a lot of pressure being put on Italian authorities and government by many MS groups to allow Zamboni to continue treating MS patients. Bottom line is that Zamboni is not currently performing the procedure. This is also a little strange because he just released his study and I didn’t see anything in it that would warrant this action????but it’s suspected to be some sort of bureaucratic problem.

Coincidentally Dr. Dake stopped performing the procedure shortly after Zamboni was stopped. All of a sudden big news was coming out that one person had died from the procedure and another very serious event had occurred. Well as it turns out the death was not as a result of the procedure but this news wasn’t nearly as important and seems to get little attention. The serious event that occurred was a stent slipping from the vein and moving into the artery. I believe the patient required open heart surgery to rectify the problem but he is recovering well. The way Stanford halted the procedure so abruptly was surprising, there were people from around the U.S. that had flown in for the treatment only to find out their procedure had been cancelled. There are a lot of angry people over this but no more procedures will be done. This could very well be a legal issue for Stanford and perhaps the reason for their abrupt stoppage but one never really knows. Dr. Dake will be starting a clinical trial in January so hopefully those people whose procedure was so unexpectedly cancelled will be first in line for his trial.

I had my MRI on Wednesday and stopped into the MS clinic to see if I could get their perspective on things. I spoke with a head nurse and as I suspected her response was cautiously negative. Of course the death and serious event had a large impact, that’s where I learned of the death. So needless to say there aren’t any studies planned around CCSVI and nothing on the horizon. Before my MRI I spoke with the technician and he told me that they can do an MRV but as of yet they don’t have a specific protocol to follow. Hopefully Dr. Haacke’s efforts will be able to change this shortly! I was also told that False Creek Surgical can do the procedure and possibly the Doppler ultrasound but at the time their head doctor hadn’t confirmed this. People have to be cautious in getting tested because it can be useless if not done by the proper protocol needed to move to the next step to correct the blockage and I don’t think we’re there yet.

The Buffalo CCSVI study has been halted until later in January to give researchers a chance to analyze results from the first 500 participants. The study should resume by the end of January but I still haven’t heard of any studies around Calgary. Research proposals are due February 9th but the MS society won’t announce funding decisions until June 14th. The maximum funding amount is only $100,000 so I’m not too sure that we’ll see any significant research from this, we need some serious studies and trials to take place! I think this requires more than the MS society, we need our university research bodies on this and our sceptical MS clinics. I don’t want to wait a year to review the study from Buffalo just to determine we should start doing similar studies here. It seems odd to me that all the initial excitement seems to be fading away except for us MS’ers.

The CCSVI Facebook group was threatened to be shut down! They had to delete some things due to abuse reports that were filed and as long as people aren’t using names and hurting anybody’s reputation or feelings, it will be permitted to stay online. What ever…. Like I said there are some suspicious things going on and conspiracy theories are coming out. Not that I normally pay much attention to that sort of thing but in the end everything comes down to money. Big pharm stands to lose billions of dollars and so do organizations like MS societies and you never really know where influence is coming from. Many people are looking into direct funding opportunities into CCSVI research and diverting their donations to a more specific cause.

I totally agree that we need much more research into Zamboni’s work and we can’t just open the flood gates to everyone with MS to get tested but we can’t take years to get into it. I won’t be seeing my neurologist until January so I really don’t know his position. Once there is an established and accepted protocol for MRV or ultrasound I will be getting a referral post haste, I really want to know if I have blockages! If in fact I do then I’ll really be on a mission to have my veins cleared and allow the blood to flow properly. I really do believe in this theory and Dr. Williams’s hypothesis makes so much sense as well. I never realized that I grinded my teeth but I’ve seen the evidence now and after wearing an aqualizer for less than a week I had it ruined! An aqualizer is a similar to a night guard but quite temporary, it has two pouches filled with water that keep your teeth from touching and I had them burst in no time.
After more research into his hypothesis I’m sure it has an effect, not just causing pressure changes and bleeding in the brain but that the end result actually is a cause of CCSVI. If this is the case then I’ve been unconsciously doing some big damage. Dr. Williams said I have temporal muscles like Arnold Schwarzenegger! I know that I often find myself tensing up; you know how your body and muscles tighten and become stiff when you get cold. I see this response occur quite regularly, not just when I’m cold but to the extreme when I am cold like in the -30° temperature we’ve had in Calgary lately! I know my muscles tense up in my back because like my temporal muscles, my back is totally ripped, I’m sure if I flexed you could identify every muscle. My massage therapist used to tell me that my back muscles were so tensed that it actually hurt her fingers. My layman hypothesis is that this has a similar effect like grinding my teeth or clenching my jaw. Having said that, I’m very eager to get tested for CCSVI.

I still consider myself to be doing quite well but I’ve been experiencing more difficulties lately. At times my eyes are really sore and I’ve been moving around much slower. The winter cold and snow contribute to this but my legs have felt very heavy and I haven’t had a lot of energy or motivation. My balance has deteriorated as well which has been a problem, especially getting around on snow and ice. In the last month I’ve had four falls which is probably more than I’ve had in the last year. I sure don’t feel as young and resilient as I used to.
Anyway this is probably my last blog before the holidays so I wish everyone a MERRY AND BLESSED CHRISTMAS!
LC

READY, SET...GO!!!

I thought the W5 episode was awesome and ironically seemed to follow the same path as my blog! It will bring so much exposure that anyone with MS will hear about it and I’m sure be over the top with excitement just as I was when I first learned about CCSVI. I am sure that MS clinics and societies will be overwhelmed with phone calls today. I knew that cautious scepticism would be the MS society’s position but to discourage people from being tested is just wrong. First of all, you can’t just go and get tested, so far I don’t know of any facility in Canada other than Dr. Haacke that is ready to do the testing and I know that if any are that they have been overwhelmed with enquiries and willing volunteers. Hopefully we can keep the pressure up so that an accepted protocol like Dr. Haacke’s can begin to spread around Canada. Demand for these tests is going to be huge so this may pose a problem but we have to keep the heat on and demand that our MS clinics and research bodies take this seriously. I spoke with the Calgary MS clinic as recently as last Thursday and was met with complete scepticism and negativity regarding CCSVI although I’m sure that wasn’t an official position. My point is that everyone with MS should contact their neurologist to enquire about CCSVI so they are inundated with requests and feel forced to act. There’s no way we can let this break through take years to get past the trial stage and become available to those of us suffering. As Dr. Zamboni said, MS is a progressive disease and people can’t afford to wait around while our bodies deteriorate.

Having said that, we must also realize that this is only part of the big picture, there is so much more to learn. Reading through some of the info being posted on MS internet forums makes you understand that there are still many questions and unknowns regarding CCSVI diagnosis and treatment. We must be cautiously aware that this is not going to be the answer for everyone but it does give us a running start. I do believe that this breakthrough will spawn many new discoveries and kick start new research ideas across the world; I think this is the beginning of the end of multiple sclerosis! Now that CTV has broken this story I expect American media will jump on board and maybe things will begin to snowball. The internet fervour has already begun to heat up and where there’s a new story, there will be coverage.

CTV came by my house today for an interview with Avis Favaro to get my reaction to the news. Even though it wasn’t new to me I’m still totally excited and even more so that the story got national exposure. It was quite short but I think will air on the six o’clock national news.

BREAKING NEWS...I was just told that the MS society will be opening up funding for CCSVI research in January! Now that’s what I’m talking about, look how quickly their position turned! Once we get enough people on board and can put enough pressure on our medical and research bodies, things will really start to move.
LC

OUR UNDERSTANDING IS IMPROVING

I met for a consultation today with Dr. David Williams; he’s actually a dentist but the man studying the new MS treatment I referred to in my last blog. It’s a simple concept on the face of it but very complicated in the details. I always try to research or fact check any information before I include it in a blog, I don’t want to be responsible for any misinformation but I do encourage correcting comments. In my last blog I made a statement that may have inferred W-5 wanting me to keep quiet about CCSVI but the reference was only in terms of posting an airdate until the station had confirmed it. W-5 has done a great job searching out and reporting on MS research and advancements and I do commend them for raising awareness on many issues in an unbiased manner which I don’t speak of much when talking about the media. So I was careful not to talk about Dr. Williams work, I just didn’t know enough about it. After today I know quite a bit thanks to a very thorough explanation and demonstration with a skull showing how the bones move etc. but way too detailed for me to reiterate it. The simple basis of his theory is that an incorrect bite and grinding of teeth can cause bleeding, pressure or other detrimental changes in the brain. There is a very complicated interrelated series of events that occur between jaw bones, facial and temporal muscles and bones and our brain. Essentially what he has found is that by stopping the damaging and hidden effects of grinding teeth, MS symptoms have abated. He has been working on this theory for over ten years but I think he’s only studied around 30 MS patients however they have had some astounding results.

For some people just stopping the bleeding has been enough but for others the same positive results have not occurred or at least not to the same extent. He believes that in some of these cases the blood can’t drain and so the problem worsens. He has been studying Dr. Zamboni’s work and will be inviting him to Canada to explain and discuss this research. He believes this is a small part of a much bigger puzzle that we are now finally beginning to understand. With the basic principles that are now being proven, scientists and doctors from across the spectrum can begin opening up a whole new world of ideas and treatments. If only it were that easy, unfortunately it’s not. There’s a lot of science here and without a road map it’s very difficult to understand. I’m hopeful that Dr. Williams can put together some information and websites that can explain things better than I can. He is trying to talk with neurosurgeons or specialists with the brain and scull because it will take more expertise to really start understanding things and he seems quite aware of how difficult it can be to get a research trial set up.

In the meantime why not give it a try; at least I’ll stop grinding my teeth. He’s got a pretty cool set up for taking a mould of your mouth and teeth so he can understand exactly how your bite is working. At least it’s a procedure that should be covered by dental benefits so it won’t cost me a bundle. It is possible that I could notice a difference very quickly like Dr. Williams has seen in the past but I won’t get my hopes up. I am very curious to see if I can recognize a difference in the next six months but I’ll remain positive. As I get more figured out on Dr. Williams’s findings I’ll post again.
LC

THE STORY GETS BETTER!

I’ve got some new developments in the CCSVI discovery and as each week passes I’m hearing more encouraging news. I’ve still not been able to garner any solid information out of Stanford other than confirmation that the cost is $80,000. There are still no published results but I am hearing good news through my involvement in CCSVI online forums. There is a lot of anecdotal evidence of the success of this treatment. One of the early patients to undergo the procedure at Stanford whom I’ve mentioned has shared a lot of information with me. His name is Lew and his blog is linked with mine for anyone that is curious to learn about his experience. Lew just returned from Stanford for his 8 week follow up and reports that everything is great, his stents have set in perfectly.

Many improvements are being claimed due to the procedure but the one that most interests me is relief from fatigue. Fatigue issues are probably my biggest problem and to gain a hand up on this symptom would improve my life immensely! Lew tells me that he normally has to be pushed through airports on a wheelchair but on his last trip to Stanford he walked the entire time and had extra energy to boot! When he was required to walk he would normally have to use his cane but he didn’t even bring it with him on his last trip. He’s told me how he was able to rake leaves from his yard for over an hour which is something he wouldn’t even have considered a few months ago. His gait has improved substantially and when he does get worn down, his recovery time has been cut significantly. The exciting part about his improvements is that his MS is in the progressive stage like mine.

When I first learned about CCSVI I contacted Avis Favaro from CTV to see if she had heard about this new development and she informed me that they had and were already shooting a W-Five episode on it. Kudos to Avis and CTV for finding out about it before I did and basically before it was known by almost anyone in Canada. They flew to Italy to check out Dr. Zamboni’s work first hand as well as Stanford, her impression was that there is a lot more science behind this development than other ideas that have been proposed. She wanted me to keep this quiet until they had a firm air date which has now been confirmed for Saturday November 21st. W-5 will present the report at 7 PM EST across the CTV network, again at 12 PM Sunday on CTV News Channel and also on their website: w5.ctv.ca. Hopefully this will open up a lot of minds and ambition in the Canadian medical system because there seems to be very little going on in Canada.

I tried to contact my neurologist to discuss CCSVI and knowing I wouldn’t reach him by phone I sent an email. He replied saying that under Alberta Health guidelines he is not allowed to use email for any form of patient contact and that a nurse would contact me to set up an appointment in December after my MRI was done. A nurse did phone me to arrange an appointment but also to inform me that I was wrong in trying to circumvent their normal procedure for contact with a doctor. It almost felt like I was being scolded but I wasn’t interested in an appointment, I just wanted to meet for a coffee and have a quick chat. I will now have to wait until December 17th to talk with him.

I have registered with Dr. Emery’s office at the U of A to be enrolled in the program that will be testing for CCSVI but it won’t be up and running for a couple of months. Apparently there is a similar study being conducted by a Dr. Katherine Knox at the Saskatoon City Hospital in a couple of months as well. As far as I know these programs will just involve diagnostic testing but I haven’t heard anything on the procedure to repair the blockage once found. This procedure is now being referred to as “The Liberation Treatment”. It is this instance that will make me very frustrated and angry with our medical system. When asked the question before regarding leaving the country for stem cell treatment or why we have to wait so long for access to new drugs I could see the government’s reasoning behind their cautious policies. However, if it turns out that I’ll have to wait years or have to find a trial in order to have the procedure done I’ll be furious. This is a relatively simple operation performed every day for the heart with perhaps some subtle differences. It’s pretty simple, if you know there is a blockage in the vein then fix it, it’s not like we don’t have the technology! To have to leave Canada for this procedure and pay $80,000 is exactly what the anti-Obama health care lobby loves to hear. Well I’d love to make noise about it here if it comes to that!

I’ve just recently come across another new MS treatment that has its own amazing story and it’s local to Calgary. Coincidentally the theory behind this treatment is directly supported by Dr. Zamboni’s work. They have not released anything publicly yet but I have spoken with the doctor and have an appointment to see him this week. I don’t know how much detail he would want me to publish at this time so I’ll expand on this in my next blog. I won’t make it too long before I post again.
LC

APPEARS SOLID SO FAR

Since my last post I’ve done a lot of research on this new CCSVI break through and I’m just as excited now after learning what it’s all about. It seems to be moving quickly in the U.S. because there are apparently many centers working on trials. I’ve looked at the research and treatment procedures carefully including the diagnostic testing required to determine if CCSVI is present. I’ve found some great websites in this latest research, joined a couple of online forums and talked with one of the early patients to undergo the procedure. So far I’ve found this to be as legit as it gets, it’s amazing that it’s received so little attention or exposure. It is quite new and possibly because this is a potential cause and treatment (cautiously optimistic cure) for multiple sclerosis but it doesn’t involve any pharmaceuticals. If anyone wants to find some more detailed info you can check thisisms.com, csvi-ms.net/en or ms-mri.com, they are all very informative.
The Calgary MS Clinic doesn’t seem to know anything about CCSVI but I’m trying to discuss this with my neurologist who is apparently also the director of research but he’s out of town now. I may have found a doctor in the U of A radiology department who is conducting research into this but these studies are not well known and difficult to source. Dr. Dake at Stanford has now performed the procedure on over 50 MS patients but there are no published results yet but he is starting a trial soon. I’ve contacted his office and I’m waiting for a patient coordinator to call me but I have found out some information. It sounds like a simple procedure that would just be like a day surgery; apparently he can perform three per day. As for the cost...it sounds like a “retail price” can be as high as $80,000 all the way down to $30,000 for an insurance company price. I haven’t yet looked into whether or not I would have any coverage for this, doubt it, but where there’s a will there’s a way. Hopefully I can find a trial here at home and not have to pay anything.
Dr. Dake learned these procedures and worked with Dr. Zamboni who discovered CCSVI in MS patients and has treated over 500 people. As with many new advancements it appears to have phenomenal results on those with relapsing remitting MS but less pronounced for the more progressive stages of the disease however further test results are needed. I believe this is where the role of stem cells will come into play. If it turns out that we know how to stop the disease, next we must learn how to repair the damage that has already occurred. Take it from someone who knows the progressive side of the disease, the ability to definitively stop the progression is a huge relief, there is so much stem cell research being carried out across the world that I feel confident the next step of recovery will not be too far away.
In the mean time life continues so I’ll talk about the new treatment that I’ve been trying recently. I’m always receiving tips on new treatments to try but it’s very rare that I actually end up trying anything. In the last 13 years that I’ve had MS I’ve been on almost any remedy you can think of whether it be diet or vitamins, but I’ve not found anything that made a significant difference. I’ve spent a lot of money and faced a lot of disappointments so I avoid most suggestions but usually research them all on the internet. Recently I was told about a doctor that practices only Chinese medicine, herbs, acupuncture and massage. I was told that he can tell what your ailments are by simply taking your pulse and that he’s successfully treated many people suffering many different ailments. My brother in Los Angeles has been seeing this type of doctor and swears by him, to the point that he’s pretty much abandoned all other doctors and pharmaceutical prescriptions.
So on this odd occasion I decided to give him a shot and booked an appointment. He also runs a herbal pharmacy which is quite impressive; there must be hundreds of different herbs etc. When I came into the office I was asked what my problems were and I replied “well I’m waiting for Dr. Mah to tell me”. He has a very small examination room, one chair for him, a tiny table and one chair for the patient. I was brought into this room and sat down in front of Dr. Mah who speaks very little English but seemed somewhat impressed that I knew some Chinese. He basically took my pulse on my right wrist then moved to my left and looked at my tongue; this took less than a minute. Through his interpreter he said that my shoulder and lower back are sore, I’m not sleeping well and sometimes have a problem breathing and that something was not right with my liver and kidneys, apparently I was out of balance. Well I don’t think I was giving any indications that my shoulder was sore and my back has been a problem for ages but wasn’t particularly bothering me at the time so the fact that he nailed these troubles impressed me. I wasn’t sleeping well, mainly due to my frequent urination and oddly I do have this weird sensation of breathing difficulty that usually occurs at night but is very short lived. I haven’t thought about it much and never spoken of it so again I was surprised that he identified this. I figured that if he could tell all of this by my pulse that he deserved a shot. The next thing I knew he was scribbling away in Chinese on a sheet of paper that turned out to be my prescription. Seven lunch size paper bags filled with who knows what and instructions on how to prepare the medicine. First I have to soak it all in cold water for 2 to 4 hours then bring it to a boil and simmer for half an hour. Then drain the liquid and fill up the pot again to boil and simmer for another 20 minutes. I can’t really call what I was boiling up herbs because it was made up of tree bark, dried out plant material and a bunch of really weird unidentifiable stuff, see the photos. It stinks up the whole house when I prepare it with a very pungent odour and tastes absolutely horrible! To paint an accurate picture of how bad it is, my roommate said he’d rather drink a beer full of cigarette butts! Trust me it’s brutal and I have to drink a glass in the morning and one at night, can’t believe I did this for a week.
When I went back to see him a week later I actually wasn’t feeling very well but I guess that can be expected initially, it’s pretty hard to communicate. Anyway he wrote out a similar prescription but I said I would come back the following week to pick it up because I was going to be out of town for thanksgiving. This was a bit of a lie because I was actually planning to bail on this Chinese medicine idea. After speaking with a few friends who knew of this doctor and his positive reputation and a reassuring phone call from my bro I decided to continue. Like a regular prescription, I was told that it will take time to work and I have to take it for the prescribed amount of time, YUK!!! So I picked up my next batch and made it through another week. The third week I went back he suggested I do acupuncture and Chinese massage in conjunction with the herbal medicine. I agreed and received the treatment on my third visit because I was feeling better. I’m now at the end of my last batch but I think I’m going to leave it there. The herbs alone are costing $70 to $80 per week and if I include the acupuncture and massage it’s over $150 per week and that’s with a 2 for 1 deal on the massage and acupuncture. My benefits have run out for this so I’ve decided I can’t afford to do this right now. Maybe I’ll start again in January when my benefits renew for another year. I do think there is merit to this therapy but for now I’m quite happy to not drink this putrid concoction anymore. We’ll see what happens in the New Year and more importantly after I find out more on the CCSVI procedure. I’ll keep my fingers crossed!
LC

GOOD NEWS ON THE RESEARCH FRONT

It’s been a long time since I’ve been this excited about new research findings. Yesterday I received a phone call from a woman who became aware of me and my quest for a cure through the W-Five documentary and was somehow able to locate my phone number as many others have done but this call was special. She was extremely excited to tell me about new developments that have recently surfaced indicating that a cause for MS has been discovered as well as a treatment that almost sounds like a cure. The causes of the disease have puzzled doctors and researchers for years and no concrete answer has ever been proven as far as I’m aware, until now that is.
CCSVI (Chronic Cardiospinal Venous Insufficiency) is a condition that is not new but has only recently been proven to have a causal link to the development of MS. CCSVI is a chronic condition where blood from the brain and spine has trouble getting back to the heart. It is caused by a narrowing of the veins that drain the spine and brain. Blood takes longer to get back to the heart, and it can reflux back into the brain, spine and tissue surrounding the spinal column resulting in demyelinating lesions on the spine causing paralysis, balance and bladder problems. Dr. Zamboni is a vascular surgeon from the University of Ferrara in Italy who has been studying this condition since 1987 but until recently very little has been published. Most people have not heard of CCSVI and its link to MS until research started to be presented in 2009.
Dr. Zamboni’s work along with others has shown that removing blockages in the veins by angioplasty procedures similar to removing blockages in the arteries in cardiovascular disease have shown a decrease in the number of relapses, reduction in the number of active brain and spinal lesions and great improvement in patient quality of life. One year after the procedure the rate of relapse and probability of acute attack decreased more than 4-fold and demonstrated improvements in mental status and chronic fatigue! Dr. Zamboni has been testing the procedure on his Italian patients for 2 years and found that many have greatly reduced symptoms and are showing signs of healing. He also tested the procedure on 18 people who were in the hospital due to a bad relapse and found that after opening the blocked vein with the balloon procedure, the relapse symptoms stopped and were reversed in 4 hours to 4 days without the usual use of steroids.
The interesting part of this discovery is that 100% of MS patients tested have had CCSVI whereas none of the normal patients (control group) had it and none of the patients with other neurological diseases had it, only people with MS! In a related study by Dr. Salvi, head neurologist at the University of Bologna, out of 500 MS patients tested, 100% had CCSVI. A further study is underway at the Jacobs Institute at New York State University that will include 1000 patients. Specific tests to determine if CCSVI is present are done by what’s known as a Doppler ultrasound or magnetic resonance venography, which require a doctor who specializes in radiology rather than neurology. I don’t believe these tests are readily available but before that even happens it’s critical to get our MS clinics and research bodies engaged in this treatment. The only doctor I know of thus far who is testing this concept is Dr. Drake, Chief of Cardiovascular and Interventional Radiology at Stanford University. I think he has used the procedure on about 18 people so far and is enlisting more patients to take part but apparently it is very difficult to be accepted. I have not seen any results from his work but news on this procedure is developing almost by the hour. Even though this breakthrough is new to me and most others, there is an incredible amount of information available on the internet and a Facebook group focused on this subject.
Given the history of caution demonstrated by Health Canada and other organisations like the MS Society, availability of this procedure will likely take over five years. In the mean time I am all over this new development and if it takes getting into a clinical trial to gain acceptance, I’ll be first in line. I have heard that the procedure will be available, likely in the US but is extremely expensive so perhaps I’ll have to keep my eye out for foreign clinics offering the treatment. Either way, this is the most exciting news I’ve heard on multiple sclerosis since being diagnosed over 13 years ago. A huge thank you goes out to Debra for making the effort to find my number and call me with this amazing news!
Stay posted for further developments,
LC

Well we’re now coming to the end of September and I haven’t posted a blog since June but I’m finally getting back to a routine. I kind of took the summer off as if I were out of school on summer holidays which turned out great. I was fortunate to have spent the majority of summer with my children and we took an amazing trip to San Diego to visit my sister. This past summer has been tough on me at times mainly due to the heat even though some folks thought the Calgary summer was quite poor. Granted we did receive some odd weather but I found it to be very warm on the days and weeks that the sun was shining and believe me my body knows when it’s hot! It seems as though my heat sensitivity has increased because the warm temperatures shut me down a few times so I’ve had to be very careful not to over do it. It’s like it sneaks up on me and then pounces knocking me right out! Not that I’m surprised because I know what sustained heat exposure will do but I have been stunned at how fast it’s hit me. It’s taken less than ten minutes for my body to rebel and once it starts I have to react quickly. My upper body starts to feel prickly as the first drops of sweat begin to exit my skin. My energy drops like a stone and my legs feel very heavy. Sometimes my fingers feel like they numb because they too move slower and become useless at trying to pick up or hold anything small. If I can react quickly like sitting in my van with the AC going full blast I can recover almost as fast but I really need to get my core body temp down in a hurry. I’m sure that I looked odd in San Diego when I was dealing with an overheat one afternoon at a family fun park. We played mini golf and I tried to walk it with my cane in one hand and my putter in the other. It started off okay but within half an hour I couldn’t do it anymore. I had to sit down at the 16th hole and get someone to bring my scooter. I can’t recall who brought it, TK or Dylan but I knew this was going to be a problem. We were at mini golf so you can imagine the small pathways to navigate on my scooter so of course a wheel went off the walk into the artificial turf of the 18th fairway. I knew that would happen so it was a little funny but I was able to hobble over to drive it out, at least I can have a little fun being a master scooter. I was driving around looking for a fountain or pond, anything I could dunk my shirt in. I found a hose and ripped my shirt off, drenched it with the hose and put it back on, it felt great! Actually wet clothes or towels are the best and fastest way to cool myself down. I recovered in about 10 minutes and went go-karting but I’m sure it was a funny sight. If I can’t react quickly I end up having to lie down for a few hours to recoup so this is why I need to be careful. Since I found the summer quite warm I’ve been a little lazy because I haven’t been working out and I haven’t been writing but since school has started again my writing has resumed.
As for my health update, everything has remained stable which is very good news however the problems that I’ve always dealt with continue to plague me. There is very little consistency to my troubles other than the heat and fatigue issues. For example, the shooting pains in my upper chest and shoulder disappeared for several months but as of two weeks ago they have returned and there is no obvious trigger that produces the pain. My eyes are still bothered when I’m looking at the computer screen or TV for an extended period and my energy levels are very up and down. The important thing is that I haven’t noticed any real progression or had any attacks and I haven’t been on any MS medication in 15 months. As long as I can maintain this status quo I’m happy.
CTV replayed the W-Five episode a few weeks ago so I’ve been in contact with a lot of new people regarding my treatment in China and stem cells in general. The concept of using stem cells to treat MS as well as many other diseases has really been gaining traction. There are now many facilities around the world offering the treatment and some are claiming significant success. I’ve mentioned Cell Medicine before who operate the clinic in Costa Rica and have recently opened a new state of the art facility in Panama. Holly Huber whom I’ve written about has been a big advocate since returning from Costa Rica, she has experienced many improvements with her MS symptoms. They use fat derived stem cells which appear to be quite effective. She has recently returned for another round of treatments after feeling some of her symptoms flare up. She and the clinic agreed that they needed to treat her MS aggressively in order to keep her symptoms at bay.
An Israeli hospital has also announced success in using stem cells to treat multiple sclerosis claiming that mesenchymal stem cell treatment can repair existing damage to the nerve cells. As reported by CTV, researchers at the Tel Aviv Medical Center have pioneered a procedure whereby they remove a patient's own mesenchymal stem cells and grow them into large quantities in a laboratory and inject them back into the patient.
The Israeli treatment gained recognition when CTV reported on the success of Canadian golf pro Louise Zylstra who because or her MS could barely walk 50 yards but eight months after travelling to Israel for the treatment, she is back golfing. I have been in contact with a Canadian woman who is going through the process of signing up for the treatment but other than what she has told me I haven’t found much information on the program. It’s great to hear of a success story like Louise but there seems to be some missing information about the Israeli program. For instance I would like to know what the Israeli researchers actually pioneered because Beike has recommended for some time that all MS patients receive mesenchymal stem cell injections as the cells can not only produce important growth factors and differentiate into mature cells but can also regulate the immune system, reducing inflammation and scarring. I can’t see anything new that the Israeli research is offering even though their focus is on multiple sclerosis. So far only 25 patients have undergone the procedure and early findings suggest that the mesenchymal stem cell treatment can repair existing damage to the nerve cells but researchers note that it’s best to receive the therapy in the early stages of the disease before irreversible changes occur.
There is still much information that I need to learn about this program but I do know the cost is similar to what I paid for treatment in China. I don’t know if they do spinal injections, how many treatments they administer and what it is that differentiates them from other facilities. I did learn that the patient must first send their MRI to be examined by an Israeli doctor to determine if he or she is a good candidate for the procedure which cost $1,250 before anything is done. If approved the patient must go to Israel for the bone marrow extraction then return home and about 4 to 6 weeks later go to either Greece or Turkey for the procedure since Israel does not allow non citizens access. Although this program sounds very promising I think it is very early to make any determinations but what I found even more interesting is that Dr. Freedman has thrown his support behind this alternative. If you recall Dr. Freedman is the Ottawa neurologist who conducted the stem cell study covered in the same W-Five report that I was in. Given his previous mistrust and scepticism of other stem cell treatments I was very surprised but encouraged that he’s shown support for the Israeli program. Freedman was Zylstra’s neurologist and he stated “given the progressive nature of Zylstra's MS, such a recovery would have been highly unlikely without the treatment”. He also said “because it offers our patients promise and if it's going to give us some insight on how we can repair the system, from the standpoint of recovery, I think it's absolute that we move forward with this kind of a program" and he hopes to organize a meeting of experts to plan how to accelerate research and bring the treatment to Canada. It’s about time he acknowledges alternative treatments and the promise they hold.
I’ll have more on this and other stem cell procedures that I’ve begun to investigate in the near future. Depending on what I learn, another fund raising campaign may need to get underway.
Stay posted.
LC

NOW DO YOU SEE?...

I have written about my eye issues in several blogs but unfortunately I’m no closer to solving the problem. The condition of my eyes fluctuates between alright and not very good, depending on the day. I had mentioned that I was seeing a new ophthalmologist hoping that he could bring a new perspective to the situation. The ironic part about seeing a new doctor is that although we have never met it seems as though he’s been reading my blog. I finally found a doctor that is able to keep his ego in check and speak honestly. Just as I had thought, an honest doctor would own up to the fact that he doesn’t know what’s wrong and this doctor boldly admitted this! How refreshing!

He could see some redness in my eyes and eyelids but could not attribute it to anything specific and stopped well short of calling it an infection. He said that there is no point in loading me up with more prescription drops if they don’t seem to be doing anything except cost money, what a revelation! I asked if he thought my MS or possible problems with my optic nerve could be causing my difficulties, he said it’s possible but he really doubted it. Hopefully my new MRI will show something but yet again, this is a big uncertainty. His overall point was that without knowing what’s wrong, it’s very difficult to treat me. His suggestion was to continue using Refresh Tears and when they felt really bad to use a warm compress. Another option he gave was to try flaxseed oil, I haven’t looked into this yet but at least it’s an option. If my vision becomes very bad then I should go back to see him but perhaps the best course of action I’ve heard is his suggestion to keep a journal about when I experience pain or vision difficulty, what the situation is that may have caused it and what if anything provided relief. Maybe this approach will provide some meaningful information on how to proceed but the bottom line is that I’m sill no closer to solving the problem.

Unfortunately my vision is a serious issue that has become worse. It hasn’t affected me to the point of preventing me from doing certain things like driving so I’m praying it doesn’t deteriorate any further. Like I’ve said, it is part of the up and down nature of MS that is characterized by good days and bad so there are plenty of times when this is not a concern at all. On the other hand, there are times when I’m reminded of just how poor my vision can be. I recently went golfing with some friends, I didn’t golf but I did have a great time getting out on the course, driving the cart and enjoying a few beers. Being exposed to the bright sun and open wind isn’t the most favourable conditions to be in for my eyes but until this day I hadn’t realized how poor my eyesight had become. Even though on certain days my vision will still be classified as 20/20, this is in a controlled state looking at a chart where my eye has time to focus and disregard the outer edge blurriness which is a deficit that I’ve been left with for several years now. Very seldom could my eyes track the ball from the initial impact of the club through its flight but when I could see the ball I would lose it as soon as my view point hit the open sky. Looking down the fairway I could see it bounce after it had landed but I had no concept of where it was heading from the tee.

Even if I am able to do some scooter-golf this year I don’t think this will be a problem. To have the ability to hit the ball hard enough, high enough or long enough to lose it is something I doubt I’ll have to worry about. I guess you’d have to go way back in my blogs to find out what scooter-golf is but it’s a new innovation to the game that I developed in 2007. Basically I golf from my scooter by positioning it in front of my ball, spinning my seat around to lean against it and rest my lower legs against the shroud for stability then try to hit the ball. The first time I tried this it worked pretty well because even though I couldn’t hit the ball far I was able to par three holes. This was on a very small par 3 course but still something I considered a great achievement! Since I put my back out in June last year I didn’t have the opportunity to practice at all but I’m hoping to this year. I’ll need to take some lessons and possibly make some modifications to my scooter but hopefully I’ll be able to get out. If there happens to be a pro out there reading my blog with any experience working with disabled golfers I’d love to hear from you!
LC

SOME GOOD NEWS!

Ups and downs are one of the main characteristics of my MS. I’ve been feeling good the last while, no particular reason other than I guess I’m on an up rather than the down that I found myself on a few weeks ago. Some of my balance issues have gotten much better again and I’ve been feeling stronger. Just as it’s always been, I have good days and I have bad days, fortunately I’ve had more good days recently.
I’ve stopped acting so lazy with my exercises so there’s some renewed energy there. I’m not going to my athletic therapy anymore so for my last session I had my therapist do an in home consult. What I wanted to do is incorporate my rehab exercises together with my workout so I’d get a lot more done and not be able to avoid the rehab side. By coming to my home she could see what equipment I have to understand what kind of routines she can develop. Now I have things simplified to three different workouts that take care of my strength building and rehabilitation exercises together in less than an hour with many variations so I don’t get bored. This will force me to work out at least three times a week but I can do more if I’m feeling up to it. I used to work out four times per week but didn’t always get the fourth day in and often missed or avoided my rehab exercises so I think this new system will work well.
The largest problem that I’m currently dealing with is my eyes. They are very sore and my left has improved in the last 10 days but prior to that my vision was completely blurred. I have an appointment with a new ophthalmologist tomorrow so hopefully he’ll be able to bring something new to the table. Since this problem seems to fluctuate between good and bad days, I’m more prone to attribute my eye difficulties to multiple sclerosis. I never had an issue with my eyes until I lost the vision in my left due to optic neuritis resulting from an attack I had in 2006. My left eye has never fully recovered but has become increasingly troublesome since January and my frustration with my ophthalmologist has been his unwillingness to consider alternative causes such as inflammation around my optic nerve. I have no idea what might be wrong but different reasons for the problem need to be considered. If it is resulting from MS then there is probably nothing that can be done but it’s always worth while examining different options.
I had an appointment with my neurologist today for the first time since coming back from China. Of course his first question was whether I thought it was successful to which I answered the same as I have in my last few blogs which is that I feel better today than before I went to China. He was not surprised that I continue to experience many MS difficulties but he was very happy with my condition and agreed that I was much better than the last time I saw him. The spasticity in my legs was less severe and I was much stronger, he was pleased that I’ve been working out. He took notes on everything I could recall from my treatments in China but wasn’t too sure where to go from here. I knew that the outcome of this appointment would be the same as always; there are no known treatments that he can recommend so the question comes back to me, what do I want to do? I could go back to any of the disease modifying drugs probably Tysabri or simply do nothing. No one really knows if I will be subject to another attack, whether the disease will remain stable or if further progression is inevitable. I decided that it’s best to continue on my current path of self help and monitor what happens from here.
One of the questions I had for him was whether a new MRI would show anything happening with my optic nerve so we could possibly find a reason behind my eye problems. This is a possibility and he agreed that I should have a new MRI to at least compare the status of my brain now to before the stem cell transplants. A new scan would also establish a new baseline for future assessments so I’m very glad that he’s taking a keen interest in the results of stem cell therapy. I also gave him the requested tests that Beike would like to run for their follow up, he wasn’t sure if we could get everything they were asking for but he’ll send a requisition to the lab. Hopefully the Chinese will be able to learn something from this follow up effort.
It’s comforting to realize that my status hasn’t really changed and that I am stable. The up and down nature of this disease is very familiar to me by now and I shouldn’t have been surprised by my recent down experience. What I had reinforced in my mind today is that nobody knows what will happen with my disease or what could possibly happen with stem cell transplants. At this stage everything is an unknown so I just take it as it comes, stay positive and keep praying.
LC

KEEP YOUR CHIN UP!

I just attended an information seminar on upcoming research in MS put on by the MS Society; I do not even know where to start. I’m very glad that the MS Society sponsors these types of seminars but this one was very disappointing. The speaker offered very little new information other than the research she is involved with which may be promising one day but it is just beginning with mice experiments and she admits that any resulting treatment will be at least fifteen years away. I have done and continue to do extensive research and consider myself extremely knowledgeable in many aspects of multiple sclerosis so if I found the information presented to be completely irrelevant and far too technical I can only imagine that it flew over the heads of the vast majority of the audience. Most of the crowd was made up of people with MS and family members all hoping to hear some inspiring news and information. It was clear to me that many were not that well informed about the disease or treatment alternatives so perhaps they did gain some knowledge but there was a lot of misinformation put forward. The speaker was a research scientist focused on her investigations but she was not very familiar with other research such as Doctor Friedman’s study in Ottawa. His work was brought up but the speaker mixed up his study with another study in Israel confusing many people. Stem cell treatments like those performed in China were mentioned but maligned in the same manner that Dr. Friedman describes this alternative.
In the end it wasn’t about the information I gained or didn’t gain, for me it was the general atmosphere that was of interest. I was very surprised that no one recognized me from W-Five; there were so many people there that would have had such a great interest in the show. I always find it motivating when I’m in a crowd of people close to MS and those suffering from the disease, some far better off than I and some far worse. Either way it puts my situation into perspective when I see others state of disability and their attitudes. There was such a sense of despair and a craving for some kind of hope. I often go on about hope and how important it is so when I see people without any it’s very disheartening. There were many questions brought forward about what could possibly be done for their suffering loved one or how long will it take for something new to come along. It was as if these people were not listening to the same information that I was. I spoke with and offered information to a few people afterwards that were asking questions and not getting answers. One woman in particular was attending on behalf of her sister who has experienced a rapid decline and basically been written off by her doctors. It had essentially been explained to her that there is nothing that can be done, no hope at all which effectively drained her will to live. Once this happened her condition declined even further, this is a very familiar story that happens far too often.
It brings me back to my own personal situation and the lack of hope that my own doctors offered. I’ve had many comments on my last blog expressing disappointment and sadness, well those people need to get over it, I have! Because I feel some disappointment doesn’t mean that I’ve changed my perspective. I stated that I’m not doing bad and that is a positive! I haven’t had any further progression and for this I am happy and thankful, the future is still an unknown and this is why I still have hope. When I’m around other MS sufferers and can see how much worse I could be I can actually feel a sense of joy as strange as that may sound. It’s the classic case of the glass being half-empty or half full; in my opinion the positive viewpoint is the only healthy option. It’s always helpful to realize that whatever the situation, things can always be worse.
It seems the most prominent concern and question people had was what can be done but unfortunately this speaker was not involved in the clinical aspect at all and was the wrong person to be addressing these questions. People were desperate to find new trials or treatments but this seminar offered them nothing. This desperation comes from those who are in the secondary progressive or primary progressive category and feel that time is definitely working against them. Unfortunately there really is very little promising news on the horizon and the fact that any new developments literally take years and years was reiterated several times which I felt was discouraging to everyone in the audience. After doing an online search for MS trials I found 587 trials worldwide with 105 being new but the disheartening part is that everyone is focused on the relapsing remitting form of MS. I only found three for secondary progressive with the most promising being conducted by BioMS out of the University of Alberta. This is the same trial I was enrolled in and had to drop out of because after suffering four relapses I found out I was on placebo. Results from the first phase of this trial should be published in the second half of this year but when the treatment might become available is still unknown. Knowing all of this I can understand why people suffering have little hope and this is why I’m thankful to have my hope grounded in my faith!
I was just contacted yesterday by a man from Winnipeg who saw the W-Five episode and wants to go to China. He has had MS for approximately the same amount of time as me but he’s now 53 years old. It sounds as though he is slightly worse off than I am and his goal is the same, which is to halt progression. I can’t give him any indication of what benefit if any he’ll receive other than relating my experience but this is of secondary importance to him. He is just glad that he can try something and find a little hope. I did encourage him to have the treatment but this is a personal decision that each individual has to make. This little piece of hope has turned his spirits around and regardless of what the final outcome may be, he’s in a positive frame of mind and is thinking why not try! I still believe that the answer to MS and many other diseases will be found through stem cell technology and I think the likelihood that this discovery will be made by researchers in China is very high. It will come and at the risk of sounding very repetitive, we can’t lose hope!
LC

HERE’S THE SCOOP

April is almost over so I guess I should get a blog in but I’ve been trying to avoid writing this for the last couple of weeks. I haven’t been feeling great recently and I guess I was waiting to see where this was going. I actually feel like I’ve been sliding backwards so that is not the greatest news to blog about. This is not completely negative because I’m not doing badly, it reminds me of the Counting Crows tune when he sings “Don't it always seem to go... That you don't know what you got till it's gone”. I’m sure this rings true for so many situations in life but for me it reminds me what it’s like losing it. When I go back to review the progress I’ve made it makes me realize how much I have improved. As I’ve written before this improvement is likely not noticeable to others and since it’s been very gradual it’s not even that noticeable to me, that is until it’s gone. I just stated that I’m not doing badly so I’ll try to explain.
I’ve just been feeling a little lethargic the last few weeks and what I notice is that improvements in my balance for example have dwindled somewhat. My legs have felt very heavy at times making it difficult to go up stairs the proper way that I’ve now learned and been doing very well at. I still tire easily so the fatigue factor has something to do with it but my point is that I just don’t feel as good as I was. Who knows, this could just be a temporary slow period and when spring finally arrives in Calgary it’ll reverse again. I can still say that I’m better off now than before I went to China I just don’t know what kind of staying power I’ll experience.
I have already written about how my morning stretching ability has faded away and I’m now back to performing a completely controlled stretch and when I let it get away on me I’ll go through leg and back spasms. Another positive that I blogged about some time ago was that the relentless and annoying vibrating sensations that I experience had become barely noticeable but this too has reverted back to become a problem again. I started noticing it more at night when I went to bed and when I woke up but now it’s an irritant throughout the entire day again. The sharp pains I was having in my chest and into my armpit still come and go without any rhyme or reason but I’m used to it now so I don’t let it phase me. My eyes continue to bother me becoming very sore and my left tends to blur, I’m very sick of eye drops and ointments that I don’t think are solving anything. I think my best option is to use Refresh Tears when my eyes get sore because I don’t believe my ophthalmologist knows what to do or why I have this problem. I think all of the issues I just stated are simply another MS mystery and any honest doctor will admit that he or she doesn’t know what to do as much as they would like to think so. The sharp pains I just described are neurological in origin and this I am 98% sure of but this is too vague for many to accept. My physical therapist believes it has something to do with my cane and my massage therapist believes there is an explanation for everything and most problems can be solved with traditional treatment. Not that these are bad theories to work from but essentially I’m the one feeling it and after all of my experiences with doctors of all sorts I have learned that I am the best judge of what’s going on.
So I’ve just made it sound as though I’m falling apart but these problems are all something that I’m completely familiar with and I’ve been dealing with them in my daily life for years. I know I’ve made this sound very discouraging and I’d be lying if I didn’t admit to feeling a little discouraged but none of this is truly unexpected. The point of my blog has always been to help people understand a little more about multiple sclerosis and share my experience and insight as it relates to stem cell treatment. To do an effective job of this I have to report honestly how I’m feeling whether that be good or bad. All things considered, I think that I’m doing well and yes, I remain very happy that I went to China. I haven’t experienced any progression and I haven’t had any attacks even though I haven’t been on any MS medications for almost a year. I still can’t evaluate success or failure of the treatment and I still consider the outcome to be defined by the old adage “time will tell”.
I have recently spoken to both of the other women with MS that underwent the treatment with me in China. Both of them have had very similar results to mine, save my recent complaints. They have not experienced any dramatic improvements but they are feeling good and have maintained the benefits they’ve received and remain very happy that they went to China. My feelings of discouragement arise because I was hoping to receive greater improvements but from the beginning I have stated that I’m not going into this experience with lofty expectations. The slight disappointment I feel is temporary and just means that I’m human. Anyone that has followed my journey thus far must know that there is no room in my character for dismay or a negative outlook. I remain optimistic and always strive to live happy! There are two main principles that I cling to in order to maintain a positive outlook, the first is that the power of prayer can achieve amazing results, feelings of comfort and peace and the second is that hope is always alive. NEVER LOSE HOPE!
LC

SO THAT’S WHAT IT’S LIKE...

I recently took my children roller skating, when I say took them I mean drove them to the facility because of course I can’t roller skate. Anyone reading this blog who is from Calgary will likely remember Lloyd’s Roller Rink, what a blast from the past! I can recall spending many afternoons there when I was younger, maybe 13 or 14 years old and the place hasn’t changed. Some people now use inline skates or rollerblades instead of the larger heavier four wheel skates but other than new music, everything is the same. It was like entering a time warp, the strobe lights, flashing coloured lights and mirror disco ball brought me back twenty five years. We were attending a birthday party along with at least 5 other birthday celebrations; I was completely surprised at how busy the place was. As it turns out Lloyds has been there for over 40 years, kind of puts time into perspective.
So you may be wondering why I’m writing about roller skating, well I made some very interesting observations. Most of the people I saw were not very good whether they be young or old and it was almost comical watching people try to stay on their feet and off their butt. What I noticed was that many people experienced the same difficulties with balance and trying to move around that I go through just trying to walk. There was the stumble factor, it’s difficult to pick up your feet like you do when you’re walking so trying to manoeuvre around the very crowded concourse was very difficult for some and I witnessed many people trip over a shoe or coat lying on the floor. Then there’s the problem with balance, if there was no wall or railing for support it was very hard for some people to stay on their feet and skating around the rink wasn’t possible without holding on or having the reassurance of a wall next to them. For those experiencing these difficulties, moving around and attempting to get anywhere was a very slow process. The look of instability and desperation to grab onto something solid was very familiar to me. This is the closest comparison to my balance and walking challenges that I’ve ever seen outside of someone stumbling around in a state of complete drunkenness! Fortunately for these inexperienced skaters there is a simple cure to their problems, just unlace and remove the roller skates, oh how I wish my problems were that easy to solve!
My health update remains the same, no fantastic new improvements but I am holding steady and still feeling pretty good. My back feels much better although it’s still not healed, like I said in my last blog, I think this will be a recurring injury and I will always have to be careful not to aggravate it. There is good news from my eyes; I think the new drops have been working because I’m not experiencing as much pain generally speaking. If I have been on the computer too long or my eyes are just tired then the problems come right back. They typically do feel better throughout the day and I will see my ophthalmologist again this week so we’ll see what he has to say.
I belong to several MS and stem cell email groups so I receive many new articles and research updates but I have not seen any advancements or treatments that are imminent. I stated that I would write about new advancements that are being made but there is truly way too much information to sift through. When I sat down to do some follow up research I realized that a person can literally spend days on this task so suffice it to say that there is a lot of work underway. For instance it was recently reported that Canadian scientists have been able to manipulate skin cells to reprogram themselves to an embryonic like state and further progress has been made in creating mature human neurons from neural stem cells of the human brain and spinal cord. I think the most important research is in controlling cell differentiation meaning understanding how to create specific cell types from your basic stem cell and there are many examples of advancements in this area but of course much work remains to be done. There is also extensive MS research being undertaken outside of stem cell science. A new drug called Fampridine-SR is in phase III trials which has been shown to improve walking speed in MS and there are many other MS research programs being conducted. I don’t really care where the advancements come from as long as they become available in time to benefit me before the disease has a chance to progress any further. I remain optimistic and hopeful that the stem cell transplants I underwent will keep progression of my MS at bay for at least the next three to five years while further advancements develop.
I have always understood of the fact that stem cell transplants are not yet a cure but a hopeful treatment alternative. The point behind this treatment is that it creates and maintains hope which is extremely important when the medical community offers nothing. Hope is alive and strong!
LC

HERE IT GOES AGAIN...OUCH!

It’s been a while since my last post but there hasn’t been much happening. My progress remains the same which is a good thing because I have not seen any real progression in the MS. My days are still very up and down because fatigue is still such a big factor but when I’m energized I do see improvements in balance and mobility. Just last Tuesday I was so impressed with myself because I was walking around my house without my cane and doing very well! This is an improvement that I can definitely notice but unfortunately it is not sustained but hopefully I’ll continue to progress. I think the physical therapy has been the most beneficial but this is difficult to say. It could still be the combination of stem cells, acupuncture and physical therapy all working together.
Back to last Tuesday, I was feeling good but while working out I managed to tweak my back again. I think this is the recurring injury that I suffered through all of last summer so I’m praying that there won’t be a repeat of that. After months of suffering I finally found relief when I started seeing my chiropractor so I was in to see him the very next day which was a beginning to feeling better. The following day I had acupuncture which I still try to do once a week. On top of her usual treatment she worked on my back as well and I think this was beneficial. Then on Friday I had a massage which was successful in loosening up my tense muscles so after all these treatments my back wasn’t so painful but still very bothersome. I’ll follow up with these same treatments this week and hope for further recovery because it totally sucks to have a bad back! When I had my severe back pain in China it felt like I had a cracked tailbone which is different from the back pain I’m experiencing now but I’m sure it is a result of that same herniated disc.
It’s only been in the last month that I’ve started working out again so it sucks to have reinjured my back because last year it prevented me from exercising from June until I went to China. Working out is important to me because life is so much easier when I’m stronger. Because I don’t have balance or the ability to coordinate different muscle groups to work together, I must rely on brute strength to perform many tasks such as lifting or even opening some doors. It also gets my heart rate pumping which is good since I don’t really get any cardio exercise. I’m also a prime candidate for osteoporosis because I’ve had so many high dose steroid treatments and weight bearing exercises are recommended to strengthen bones. Working out is not only beneficial for strength but it builds muscle making me appear strong and fit, when you look healthy it’s easier to feel healthy!
Unfortunately my back isn’t the only issue that I’m currently dealing with. I recently blogged about vision problems I was having and it’s gotten worse. My eyes get very sore and like that day in Costco, they can become very blurry. I’ve been back to my ophthalmologist who continues to believe the problem is caused by an infection however I know part of it is due to MS. Like anything else the problem becomes exacerbated with fatigue and if the cause is just due to infection why has it been ongoing for over two years. Why does the pain and blurred vision come and go day to day and why can’t the antibiotic eye gel ever fully correct the problem? In the end I think he is like most other doctors and can’t fully understand what I am going through, what the real cause or causes of the problem are or how to effectively treat the problem if indeed it is treatable. Perhaps he can prescribe medicine to alleviate the pain and ease the vision difficulties but I also believe that he operates from a box defined only by the parameters of his area of expertise. He is not very personable and never voluntarily explains the causes or treatments that he is prescribing. It seems his attitude is: I’m the expert now just do what I say. We’ll see what happens this time around, I now have 3 different drops, one to apply three times per day, one to apply four times per day and one just before going to sleep. It’s very confusing to schedule the times properly so I can actually “do what he says”! When I filled the prescription the pharmacist made a faux pas saying “Oh you’re going to have eye surgery” but quickly qualified her statement after seeing my reaction. She said it’s common to use these different eye medications in conjunction with one another when having eye surgery which I’m sure isn’t in my doctor’s plans but who knows because he never explains anything.
I remain very positive about my health and improvements that may still appear. I’m also positive and hopeful about further advancements that are being made with stem cell research. I think I might write about some of the promising discoveries that are being made in my next blog. For example progress in differentiating stem cells to create specific neural lineages and specific cell pathways that prompt stem cells to specialize and become blood cells. With Obama lifting the ban on embryonic research there should be a flood of new research projects starting up and our understanding of stem cell science is growing by the day. I only wish there was more collaboration between scientists and especially from different parts of the world. If someone could actually collect and coordinate all the different research findings from around the globe I’m sure we’d experience a leap forward in our collective knowledge and proximity to new treatments and cures. We’ll get there one day and the future does look bright, we just have to cope with the present in the meantime.
LC

WORKS FOR ME!

I thought the W-FIVE story turned out well and didn’t contain any misinformation or a biased perspective. All viewpoints were presented in a fair manner and other than Dr. Freedman’s personal opinion; I don’t feel that there was a negative slant towards stem cell treatments offered in China. On the contrary, I found Dr. Freedman’s case to be less persuasive and convincing to someone like myself who is on the suffering end of this debate. Not to take anything away from his amazing achievements because I truly appreciate and recognize the importance of the research he is doing but it does not offer a direct treatment option.
I have seen how fast this disease can turn and completely devastate a body, I actually feel lucky when I compare myself with others that have deteriorated to complete incapacitation within one or two years. When one faces this possibility a sense of desperation is natural as I stated in the interview. The point I really hoped would be expressed by the documentary is that hope does exist. Judging by the feedback I’m receiving, that point was successfully conveyed! I had over a dozen email messages by 10 o’clock that evening, all of them very positive. I’d like to thank everyone who is sending out such encouraging support to me, I really enjoy the communication that has opened up. I’ve had several phone calls from out of the blue from people wanting to discuss my experience and ask questions which I think is great. The more exposure that is created the easier it will be for people to find information on what options exist. Travelling to China for stem cell transplants might not be the best option for everyone, this is a personal decision for every individual but everyone should at least have knowledge of what is available.
I think Dr. Freedman’s study began in 2000, now nine years later and only 18 people have taken part with one of them dying. There are very similar studies occurring simultaneously in the US and elsewhere but again the number of participants is very low and it is difficult to find a control group because everyone wants the treatment! As promising as this research may look, it will likely be past 2020 by the time anything is approved and made available. At the same time there are plenty of new and promising research projects going on throughout the world and somebody could come up with a breakthrough anytime but this is hopeful speculation and doesn’t offer any current alternatives. Of coarse the mainstream medical research bodies will be sceptical of what the Chinese are doing but the point is that they are doing something and that something is tangible and real now. What they are doing is creating hope and after being there myself, this is a hope based on real life experiences not just fictitious episodes or placebo induced improvements that many researchers would claim. Beike Biotech is operated as a business but the compassion and caring demonstrated by every person involved in the stem cell program was amazing so I have to refute Dr. Freedman’s statement that the only reason for their existence is to take peoples money.
I am happy to report that Beike seems to be responding to its patient’s recommendations and has initiated a more thorough follow up procedure. Just yesterday I received an email requesting information about the results I’ve experienced since leaving China in order to help Beike with their own research as well as improve their treatments for new and returning MS patients. One form is an MS Daily Life Functional Rating Scale and the other is clinical data from blood and urine tests that have very comprehensive requirements. I’m not sure what my doctor or the lab will think of their request but I am impressed that they are now taking this seriously and that the information request is not generic to stem cell treatments but focused on multiple sclerosis. I really believe that what the Chinese are doing is world class and they represent the future for development of stem cell treatments and yes cures!
I realize that there are many new people becoming aware of my blog since the W-FIVE documentary so those that haven’t followed are all curious about how I’ve been doing. Without getting into the details of my post transplant recovery that I may have already written about, I’ll just say that I feel better than before I went. Not that I can claim any great improvements and I still experience many MS difficulties but overall I think I’m better and more importantly, I know I’m not worse. Describing my progress is like watching your children grow up, you hardly notice them changing because you see them all the time but when you look back 6 months or a year the changes are huge. Although I still have many problems I can do things today that were not possible before I went to China. It still depends on the day but when I’m feeling good I often surprise myself with how well I’m able to walk or climb stairs. Time will be the ultimate judge of success but I still feel encouraged and yes I am still very happy that I made the journey!
I’m always happy to discuss my experience or share information with others who are interested in stem cell transplants so please keep up the communication. I can’t promise that I’ll be able to reply to all enquiries and emails but I’ll do my best.
LC

CELEBRITY STATUS IS ABOUT TO RETURN

Yes CTV finally got themselves organized enough to confirm a date for the W-FIVE documentary, it will air Saturday February 21st at 7:00 pm. I’m not too sure what to expect since I learned the fundamental lesson to not trust the media. I do however feel much more comfortable with the CTV production and can’t foresee any hidden agenda behind the story. The producer Brett Mitchell was great to work with as were all the crew members including the camera man in China. I’m sure it will turn out good but I still don’t like promoting something that I haven’t seen. For anyone who is not able to catch the episode on TV it will also be available for viewing on ctv.ca, click on W-FIVE and you can download the show but it can take a couple of weeks before it’s available.
As for my health update, I don’t really have any great news to report. After a reprieve for a few weeks, the sharp pains in my chest have returned but they have changed. The pain can show up anytime and is no longer triggered by specific movements. It lasts much longer but feels less intense and will spontaneously reoccur throughout the entire day. The instant sting does not produce a painful grimace anymore but perhaps I’m just getting used to it and able to ignore it somewhat. My eyes have bothered me ever since I lost the vision in my left eye in 2007 from an MS attack. My eyesight eventually recovered but has never been the same. My eyes tend to get very sore and the vision in my left becomes blurry particularly when I’m tired or fatigued. Yesterday was a different story, my eyes began to get very sore while I was in church and the discomfort continued into the afternoon with both eyes becoming blurred. I was cruising around Costco on my scooter and of course it was very busy being a Sunday afternoon. Things were definitely not normal and I was actually surprised that I didn’t run into anyone or knock over any displays because my vision had become extremely blurry (good thing I’m an expert driver on my scooter)! I don’t recall my eyes ever being this bad other than when I first lost my sight and again there didn’t seem to be a reason for this. The situation did cause some concern but fortunately everything seems to be back to normal this morning.
I suppose it’s good that I have my blog to express some of the concerns and problems that I go through because I don’t normally complain about anything so this is sort of an outlet for me. It’s typical for me to just deal with my issues internally which was probably one of the main causes of the communication problem that developed in my marriage. Anyway I just don’t like to complain, it doesn’t make me feel any better and I’m not looking for sympathy. I recall going to my doctor one day when the woman at the reception commented on how happy I always seem to be. She said that I always have a smile on my face and she has never heard me complain about anything. She found it very uplifting that I was always positive where as if anyone had something to whine about it was me yet all day long people file in and out of that office complaining about nothing really. I’m very thankful that I don’t live this way!
The cold that I thought I had beaten showed up again on Friday so I wasn’t feeling very well up until Sunday. Perhaps this had something to do with my eye problems but again I feel okay today. I took it pretty easy Friday and Saturday so I guess it’s good that I didn’t have anyone to disappoint for Valentine’s Day. It’s actually been kind of lonely since I didn’t have my children and I ended up having the whole house to myself. Well I’ve been dog sitting so I guess I haven’t been completely alone and the weekend has turned out to be quite productive. I found myself in an excellent writing groove and made a lot of progress on my book and cooked up a large batch of spaghetti sauce that I’ll freeze and get three meals out of. Family day has turned into a week off of school so I’ll get to spend the entire week with my kids, looking forward to that! Saturday is not far off so I’ll be looking forward to watching W-FIVE as well. We’ll see how the show turns out but good or bad I’ll write about it in my next blog. It will also be interesting to see if anything will happen with the number of hits my website and blog receive after the show has aired.
Stay tuned,
LC

IMPROVEMENTS ARE COMING!

It’s pretty hard to definitively say that I’ve improved because there are many conflicting results and they are all subjective. This may sound confusing so let me explain. The athletic therapy that I undergo which I’ll just refer to as physical therapy for consistency seems to be progressing quite well. As I’ve explained before, the goal of therapy is to retrain my muscles and body to perform movements that I previously could not do or had problems with. This objective was the entire focus of my therapist in China and although the techniques and exercises are very different with my therapy now the overall mindset is the same. With each new week that I visit my therapist she is able to identify improvements in my balance and strength. For example holding myself in a kneeling lunge position for 1 minute without falling over or the use of any balance support is something I can do no problem today but could not do at all 3 weeks ago. I try to not use my cane while walking around my house and I’m very happy to report that I do quite well. My therapist in China would not allow me to use my cane at all while doing walking exercise and I remember quite clearly how difficult, slow and clumsy my walk was. I even reviewed the video of my walking during therapy sessions and compared to how I perform today there is an obvious improvement. The problem is that the improvements are not maintained and I always seem to revert back to the same difficulties.
I can’t really claim any positive change in my walking because I still move as slow as a turtle and have great difficulty on ice or snow and uneven surfaces. Hopefully this will come with time, continued therapy and hard work. A major problem that continues to hamper me is the fatigue factor. I still tire very easily and when I become fatigued, which doesn’t take much, my body’s performance and movements deteriorate rapidly. Any progress I might notice depends on the time of day and what I’ve been doing but I recognize improvements that most people don’t see. My ability to go up and down stairs is much better but I’m sure others don’t notice. This again is not in terms of how fast I can move but rather performing the movements properly without cheating. Anything I do no longer comes as second nature but requires continual thinking and focus on the proper mechanics of every action. With each step I must concentrate on keeping my pelvis level and my posture upright without any leaning frontwards or to the side. My feet must point forward not angled and as I step up I must isolate my weight through my heel and push up extending my leg without locking my knee at the upper range of motion. My other leg must follow in a straight line by bending at the knee and not rotating my foot, leg or hip to the outside. It really is a lot to think about but eventually the process will be automatic and second nature. I now only need the handrail or my cane to ensure balance, I can step up or down two stairs rather than climb one rise at a time and my tows don’t typically catch the nose of each stair tread.
You can imagine how tiring it is for me to perform the most basic tasks like walking or climbing stairs not just in the physical sense but mentally. I have to be conscious of every move I make and every motion is deliberate not automatic. It is typical for me to drag my feet when I walk instead of lifting my foot with each step which is why I can trip on the smallest stone or bump. My eyes are very important as I have to watch where I place each step and where I plant my cane on each stride. Now that I can feel some progress in my movements I find myself becoming aware of everything I do such as keeping the weight in my heels while standing, my posture straight and upright and my core tight with so many positions and actions. I still have a long way to go but as long as I can notice things getting better eventually others will see my advancement as well. I’m still counting on the coming months to bring forth further improvement but as long as I am able to maintain without further progression or any new problems I’m happy! It is difficult to determine where I see my progress coming from whether its physical therapy, acupuncture or the stem cells. Perhaps it’s because of the stem cells that my body can benefit from the therapy and exercises I do but I don’t think anyone can say for sure. I do not want to build false hope or expectations, I just want to maintain hope and continue working on getting myself better.
Oddly enough after I was just boasting in my last blog how I never get sick, WHAMMO I came down with a cold this week! Fortunately it hasn’t been bad and I was only affected for a few days, I’m pretty much on the mend now. The shooting pains I was experiencing in my chest have also disappeared and will hopefully not return. The disease continues to act as if it has a mind of its own and is by no means predictable so I continue to pray for healing and that my condition will not worsen. I will always keep my blog up to date with any changes that occur so keep checking for new posts.
LC

WELCOME 2009!!!

I hope everyone had a wonderful Christmas and New Years, mine was very good and family oriented. Now it’s on to a new year which is usually considered a good thing and I'm sure most will agree after the chaos the world experienced in 2008. It’s a time to look back at the year gone by and establish some goals for the year to come. For some this involves making new years resolutions but I never do this. Very seldom do people keep their resolutions so I figure why set yourself up for disappointment and failure. I prefer to use this time to think about goals I would like to achieve and things in my life that I’d like to change rather than make empty promises to myself.
When I look back at 2008, I’m quite pleased and consider it to be a successful year, a far better year than 2007. I did not really start the year with any specific goals but I did end up with some major accomplishments. I started writing a book in 2007 but that got put on the back burner with my efforts focused on going to China. The first few months of the year were spent researching stem cells and contacting people who had been to China and undergone the treatment. It was not until early spring that I had gathered enough information to convince myself that stem cell transplants were a viable treatment for me and going to China became a priority. Now I had a concrete goal, raising over $40,000 to get me there! Considering I had no experience in fundraising, coming up with such a large sum of money presented a very difficult and ambitious challenge. It wasn’t until late May that I got my website up and running and began collecting donations.
My original target date of late August to be in China proved a little too ambitious and didn’t make much sense considering the overlap with the Olympics. In the end I was very thankful not to be going that early, the heat would’ve been very difficult for me and arriving at the beginning of October turned out to be the optimal time. I was always positive and optimistic about raising the funds and never got too worried even at times when the cash coming in slowed to a trickle and things looked pretty dismal for my silent auctions. That’s the peace and confidence I gain from my faith in God and around every corner I turned He was there putting the pieces together and working in my life. In four months I had raised $45,000 and the timing of everything was perfect.
Not only do I consider my fundraising campaign a success but the actual trip and completion of the month long treatment program was also quite an achievement. I’m very happy with the fact that I stepped up and made the effort to take control of my MS rather than accept a fate of continued disability and the claim that there is nothing that can be done. I can’t declare the treatment a success yet as I haven’t experienced any real improvements and as I’ve recently explained I have actually experienced some problems. Various symptoms come and go as they always have however I never expected that situation to disappear. The sensory sensations that I was experiencing in my legs recently have pretty much resolved but now I’ve got a different problem. In an early blog titled MS the invisible disease I explained a painful neurological problem where I feel a sharp pain like a bolt of lightning travelling through my arm and this situation has reappeared. This time it started off with certain movements that would trigger a feeling like I’d been stabbed in the chest, its short lived but very intense. The pain was sill occurring after several days but can now last up to a minute and is extremely uncomfortable. Even though this is a recurring difficulty, it to will resolve itself and I don’t let it discourage me. I still have several months that I can see improvements occur and I will continue with my therapies in anticipation of a change for the better.
2008 was also the year that I was finally able to quit smoking. After 24 years and many failed attempts at quitting, I guess my time was finally up. I wasn’t a heavy smoker anymore and I really cut back in the month prior to leaving for China but did not expect it to be as easy as it turned out. My last smoke was on the sidewalk before entering the Calgary International Airport but it was different this time. I normally make a big deal in my mind to reinforce the idea that this is my last smoke and in a sense to say goodbye to a nasty habit that I enjoyed so much. On this occasion I didn't give it a second thought, I had already prepared myself to not smoke while I was in the hospital and it really did not bother me. The strange thing is you can smoke anywhere in China, even the hospital yet I didn't have one craving! I am positive that I will be able to stick with it this time.
I don't know if I'll have anyone following my blog anymore but I also consider it to be very successful. I actually had almost 5000 hits while I was away which was a complete surprise to me! Many people have said that reading my blog had become part of their daily routine and how disappointed they were when I would miss a day. I have received so many compliments on my writing and encouragement to write a book that I now feel inspired to carry on with the book that I've already started. It was actually my blog that caught the attention of W-Five which might also lead to another successful outcome. I've been told that the show will air on February 7th but that is not a confirmed date yet. I have no idea how it will turn out once they piece together all the footage they have but who knows where this could lead to or what doors it might open. Perhaps it will develop into a future promotional opportunity for launching my book.
As I look forward to 2009 I really only have one concrete goal set for myself which is to complete my book. Writing a book is quite a monumental task but it is an objective that is entirely up to me and something that has a measurable outcome. Successful completion of this undertaking will hopefully lead to a new career for me however this is not an outright goal but a hopeful long-term outcome. Although this is the only specific goal I have set for myself for the coming year, there are many other changes and accomplishments I would like to see in my life. An additional goal might be to have the book published in 2009 but I prefer to keep my ambitions dependent upon myself and not have to rely on anyone else or outside influences to achieve success.
One obvious change I would like to see in my life is of course an improvement in my health, specifically to the problems I face due to MS. Aside from multiple sclerosis I am an extremely healthy individual, I can't remember the last time I was sick from the flu or a cold. This is somewhat surprising considering I have spent a lot of time with my children while they have both been sick not to mention my roommate’s kids who seem to have colds very often. I've been on the verge of getting sick several times but have always been able to fight it off, knock on wood. I will be happy to see any positive improvements to my MS such as my balance and walking ability, no matter how small. There are so many little issues that I deal with that progress can occur on many different fronts. As I continue with my acupuncture and physical therapy I feel confident that I will achieve positive change.
I would like to find a girlfriend this year, or at least a woman that can see past my physical disabilities and accept me for who I am not what I can't do. Female relationships have been a real challenge, it seems that because I can't go hiking, skating or participate in most physical activities that I'm deemed unworthy. I’m really just looking for a friendship but every woman I meet wants to judge me based on potential husband criteria and apparently I fail in that category. After all my former wife openly admitted that she left me because I have MS, go figure. Sure I don't cut grass or shovel snow but I'll bet I'm a lot more useful than most husbands and I'm far from lazy. At any rate I don't want to be married or start off a relationship under that premise, I'm a lot simpler than that. There is someone out there for me; I guess it's just a matter of time and patience, hopefully in 2009 I'll find her.
I'm sure there will be many changes and new opportunities that will come up for me in 2009 that I don't have to set out and plan for at the beginning of the year. I'm happy that there are so many aspects of my life that I don't have to change and that I live with a very positive attitude. Sure I have my struggles but I am blessed in so many ways and I thank God for my blessings everyday. I wish everyone a happy and healthy New Year and that great things will come your way in 2009!
God bless,
LC