NIGHTMARES FROM INDIA

Well its just gone over 6 weeks since I’ve returned from India, I feel bad that I haven’t posted a follow up blog but I just wasn’t sure how I wanted to approach it.  Apart from our actual trip, there have been many things happening in the last 6 weeks to write about so it’s difficult to know where to start.  I suppose I should begin with my treatment experience from India but I would like to add a small disclaimer before I begin.  The following account is from my individual experience and is not intended to disparage the treatment at all or the results that have been reported thus far.  Having said that I must document the “HELL” that Lorelei and I went through if only to provide full disclosure of the facilities and treatment from Inamdar hospital.  I believe people deserve a true understanding of what to expect from the treatment, the hospital, facilities and claims made from CCSVI Clinic.   

Our trip began on a very difficult path, we flew 9 hours to Amsterdam and had no down time before catching our next 9 hour flight to India.  This totalled over 20 hours of continuous travel and then we had over a three hour drive from Mumbai to Pune.  It was actually good that we arrived after midnight because we basically missed the traffic that would have otherwise turned the 3 hour drive into a 6 hour drive!  So we finally arrived at the hospital sometime after 3:30 am, completely exhausted and looking forward to some real sleep on an actual bed.  Our first impression was one of disgust, we were taken to our room on the 6^th floor only to find it filthy as though they hadn’t known about or prepared for our arrival at all!  I however was not prepared to deal with the situation until the following day after we had gotten some rest.  I at least had a real bed, not comfortable or clean but it was a bed, Lorelei was not as lucky as she only had a thin foam mattress, 2” at the most placed on a plywood bed frame.  At the time it didn’t matter, sleep was all we cared about.  I was shocked when hospital staff began coming into our room within only hours…I thought to myself seriously, get the hell out!!  After our long journey we were given less than 3 hours of uninterrupted rest and this is how our hospital experience began and to be honest it never really got much better.  My expectations that were based on pictures and claims from the CCSVI website were quickly squashed and replaced by the reality that we were completely mislead.  This hospital was nothing like the pictures or description provided on the website or anything remotely similar to descriptions made by previous patients.  There was no clinic to speak of, we had a room and that was it.  There were no other patients except one woman whose room was on the 9^th floor.  Thank God that we had someone else undergoing the treatment at the same time even though we were completely isolated from each other.  Meeting Lesley and her caregiver Kim literally kept us from going crazy but the only time we had to communicate was during cross over times for our physiotherapy and beyond that the only time we saw each other to visit and offer each other support was when Kim would bring Lesley down to our room.  I wasn’t permitted to bring my scooter (which I understand their reasoning why) so I had no mobility and wasn’t even given access to a wheelchair.  Therefore the only time we had to visit was when Kim brought Lesley down to the 6^th floor because Lesley fortunately had her own wheelchair.  We were completely isolated and the concept of a clinic did not exist!  The only accurate comparison to how we were forced to live would be going to prison, and I’m not kidding or exaggerating.  This is not at all what we were lead to believe as it was clearly stated on their website that patients and their companions are admitted to the clinic’s own wing within the hospital for the patient’s specific medical therapy, this is how I envisioned the “clinic” setting to be.  There were many other statements from the website that were completely false.  For example: “The multi-cuisine dining facility serves a wide variety of north Indian, south Indian apart from traditional Indian meals and snacks. For an occupant of a deluxe room, the elegant interiors and the view of an adjacent terrace garden are designed to make his or her stay not just comfortable but also pleasurable.”  Completely false statements, our stay was the furthest thing from comfortable and pleasurable as you can get!  I can also assure you that I would have rather eaten food from any North American prison than the hospital food we were served.  Another lie from the website states “All meals are catered on the ward; snacks are available on the ward 24/7. All cuisine is North American, unless the group decides they would like to sample some Indian cuisine”.  Requests that we made for North American food came to us inedible most of the time.  We ingested the food for sustenance only, it was terrible!

Another false statement “The hospital itself is a multi-specialty facility that is centrally located in the city and outfitted with state-of-the-art infrastructure complete with an eminent panel of multi-specialty physicians. International Services for a global patient population ensure that distance and language are not obstacles to receiving world-class care”.  For starters hardly any staff spoke English, let alone fluently, communication was a huge barrier!  Another huge barrier to understanding was the fact that none of the staff, that I met, knew what multiple sclerosis is!  Nobody really knew why we were there, what the effects of the disease are or the limitations that MS places on our bodies.  It became extremely annoying being asked everyday what MS is and trying to get staff to understand the effects it has on our bodies.

I honestly didn’t see one thing that I could class as “state-of-the-art”.  On the contrary everything I saw and experienced was completely antiquated from the blood pressure monitors to the physiotherapy equipment.  Not to say that things were not functional but far from state-of-the-art!  The only doctor that I can ever recall introducing themselves to me and their role or specialty was Dr. Malik.  Thank God again for this man; he was the only aspect of our entire experience that I can say was excellent.  He is an interventional radiologist but essentially seemed to run the entire program, without him we would have completely lost it!  As for a team of other specialists…who knows who or where they were.  The medical team tab from the website lists only two doctors and is listed as “Archive for Medical Team” whatever that means.  Dr. Alurkur is listed as an Interventional Neuro-Radiologist and he was named in my angioplasty report as the doctor who performed the venoplasty however it was signed by someone else for: Dr. Alurkur.  I was never introduced to him or any other doctor other than Dr. Malik. 

I can’t really understand how they can find any validity to their clinical results, everything is subjective.  I was never evaluated by a neurologist, or anyone for that matter.  They have no base line parameters established so I’m not sure how they can evaluate outcomes.  The use of EDSS scores is one comparative evaluation that is used but again no one evaluated me especially nobody with the proper credentials of a neurologist.  All they had to go on is what I told them my EDSS score was and I was not seen by any doctor who could clinically confirm my score.  This brings into question the follow up scores that are being reported, who are the doctors assessing EDSS scores for post procedure reporting?  This rating scale is also quite subjective and is known to not be a precise measurement of ones entire disability and is often criticized for being insensitive to clinical change and consistency between evaluators.  There are several other methods used to quantify various aspects of disability however I was not evaluated for anything!  The use of MRI scans is also used to evaluate disease status but does not represent a clear indication of disability but does provide a clear and accurate measurement of disease activity.  I don’t understand why an MRI is not taken before the start of treatment and followed up by another 3 to 6 months post procedure.  It has been stated and inferred that the treatment “turns off” the disease but I can’t see any validity to such a statement without proper evaluation of MRI data. 

This is only a very brief account of some of the issues we faced at Inamdar hospital, there are SO MANY MORE but I don’t want this blog to turn into a book!  The so called “clinic” was not the only problem or misrepresentation we encountered, there are many others!  Again I expected based on the website consultation with surgeons upon returning home in post-period.  I knew this wasn’t going to happen based on the fact that I never met or spoke to any surgeons while at the clinic!  I was also promised “Follow-up web-based software for all patients to answer surveys at intervals, upload ancillary medical information, ask questions of any of the specialists involved in your care, and a chat feature to communicate with any other patients of CCSVI Clinic to compare notes and for support”.  I’m told this is coming but patients have been told this for well over a year, starting with the first patients to enter the program yet nothing has happened.

I suspect that when they moved the program from Noble Hospital to Inamdar things fell apart.  I honestly don’t trust their explanations for having to move which is a problem for me as one of the clinics basic claims is to operate the program under a policy of complete transparency.  I can tell you that very little of their operation is run with complete transparency.  We know that Regentek is the lead investigator for the study but this is apparently where their role ends.  I have huge questions regarding the involvement of the many other parties involved with the program like the role of the hospital, who runs CCSVI Clinic, are there any conflicts of interest involved just to name a few.  This is a very convoluted organisation and I believe it has been purposely set up this way.  As an example, taken directly from the CCSVI Clinic website is a disclaimer which states: “CCSVI Clinic is in the business of facilitating travel and hospitality only. Any and all medical services are provided by medical professionals who are not in the employ of CCSVI Clinic Inc. and CCSVI Clinic does not recommend, endorse or provide any specific test, analysis, products, or procedures of a medical nature”.  Where is the transparency in that, just who is responsible for the treatments, the patients, following proper protocol etc?  This is just not right and trust me, this is only the beginning.  I have examined the guide lines and requirements for the practice of cell based medicine as outlined by the ICMS (International Cellular Medicine Society) and I take no delight in stating my opinion that the CCSVI Clinic violates and or is in non-conformance with many of these guidelines. 

If I were to go through all or even half of our experiences in India, this blog would turn into a book.  There are many things yet to discuss that I will make the subject of future blogs but I had one main purpose for this blog and that is to inform any new or prospective patients of the reality they can expect from Inamdar hospital.  I would not recommend anyone go to this facility under its current operating parameters.  The experience of my wife and I was a living hell and I would hate to see anyone else pay such a large amount of money and be mislead by the outrageous misinterpretation of the program and facilities.  Understanding full well the feelings of desperation and hope, I can’t blame anyone for still wanting to proceed but at least now you have and informed and realistic view of what to expect.  As I stated at the beginning, my intent here is not to disparage the program, its vast potential or the amazing results that have been reported but everyone deserves the truth.  I think the clinic was on the right track operating from Noble hospital but things have fallen apart since moving to Inamdar.  There is a substantial amount of work to be completed before this clinic is even close to being acceptable in my opinion.  Perhaps they have even started to correct some of the problems but I guarantee there is a long way to go.  What my wife and I went through (to be guinea pigs) caused a lot of stress to my mind and my body!  We are all aware that stress is a very bad condition for MS and I am thoroughly disgusted that I was subjected to this kind of treatment.  Through it all we decided to keep the negative experience hidden from our family and friends, we figured there was no point in spreading the worry back home.  We knew we were still receiving prayer and had faith that our own specific prayers would bring us home safe.

This blog is already so long but there is still so much that needs to be said but I’ll end with an even more concerning piece of news.  Upon my return home I was already scheduled for an MRI, this took place exactly 23 days after my last stem cell transplant.  I didn’t receive the results until 17 days later when I had an appointment with my neurologist but I knew before then that something wasn’t right.  Approximately two weeks before this I began to notice new symptoms developing, the left side of my body was going numb and my balance was deteriorating.  I had been warned that this type of response is common when new neural pathways are opening so I wasn’t too concerned and kept up with physio therapy and exercising.  By the time my appointment rolled around the symptoms had escalated, these were new symptoms and I was sure that I was having an attack!  How could this be possible, the stem cells are supposed to “turn the disease off”!  Well it didn’t work for me; my MRI showed a new enhancing T2 hypereintense lesion and my neuro knew that I was in the midst of an attack.  He offered me a prescription for high dose prednisone but I declined in favour of just monitoring things for a while as my symptoms were not really problematic at the moment.  I reported my suspicions of an attack to the lead researcher from Regenetek on May 14^th and again on May 17th with MRI evidence of an attack but did not get a response until May 19^th.  The response I received was one of scepticism reiterating that this was a normal response and virtually every patient thus far has had similar experiences.  I replied saying that I was convinced that I was having an attack, after having so many attacks over the last 17 years (too many to count) I knew exactly what was happening in my body.  Things started to worsen over the weekend of the 18^th and 19^th, the numbness was spreading to my right side, my legs now felt as if they weighed 100 pounds each making walking EXTREMELY DIFFICULT and I couldn’t feel the left side of my ass!  Well I could feel it but it felt as if my left butt cheek and foot belonged to someone else.  I was extremely concerned with the rapid progression of my symptoms over the last two days and was now desperately wishing I had taken the prednisone prescription.  I’d been in this position before and had the disease flatten me to the point of crawling; I needed to know from the lead researcher what would happen to the stem cells if I was on a high dose course of prednisone!  I didn’t hear back from him until the 21^st, the day I had mentioned in my email that I would be filling the prednisone prescription unless he could provide me with some very compelling reasons why I shouldn’t.  Fortunately the rapid progression of my symptoms subsided by the 21^st and I had to make the call on my own to not start the prednisone.  I did send another email stating that I needed to speak with the lead researcher very soon and got a reply that he would call me on the 22^nd.  Well that call never happened until the 23^rd at which time I was informed that the prednisone would essentially damage the stem cells to the point of being non functional.  I had been waiting for this information since my first contact on May 14^th, I got the answer 10 days later, unacceptable and bordering on incompetence if not negligence.  He knew that I would lean towards the drug if my condition worsened yet he neglected to inform me of the negative consequences of taking the prednisone.  So I never did use prednisone but this was my decision based on instinct and what little information I could garner from Google.  I must still be positive and believe that the stem cells will kick in once this attack has subsided a little.  I am very surprised that the stem cells haven’t had a positive reaction because they are meant to be attracted to areas of inflammation and trauma in the body.  I don’t want to wreck the chance that the stem cells are still alive and waiting to work but I do wish I had the prednisone.  I have always responded well and at the moment I need something in the absence of any action from the stem cells.  My condition has become much worse over the last several days, it’s not good but at this point I think I’ll have to suck it up and just deal with it!  I just have to pray that things won’t progress to the point of not walking at all.  I feel so tired and can’t do anything that requires me to exert any energy.  My balance has deteriorated big time and I seem to be very clumsy, to the point that I have difficulty using cutlery.  Overall I’m just not a very happy camper at the moment.  I won’t let my faith in the treatment and the stem cells fade away, my faith in God and his plan is more powerful than anything that is happening. 

I do apologize for the length of this blog but there is so much to relate and so much more to follow.  I have topics that can keep this line of discussion going for many more blogs and there will be many to follow.  Again the intent behind this blog is not to create doubt and worry in the minds of patients or their families; the objective is to relay truth about my experience and to prospective patients.  We all deserve to know the truth and not be mislead into such an important decision based on inaccurate information.

My story will continue so until next time,

GOD BLESS

LC        

THE TIME HAS FINALLY COME!!!

It’s hard to believe that in less than 24 hours my beautiful wife and I will be on a plane heading for India, it seems I’ve been waiting for this moment for an awfully long time!  I’m very happy that the time has arrived but not very happy about the time it will take to get to our destination.  Our flight time to Amsterdam is over 8 hours; we have less than two hours before our next flight to Mumbai which will take over 9 hours!  Once we land the clinic will be there to drive us to Pune which I’ve recently been told is over a 5 hour drive which was completely unexpected!  We leave on March 26^th and don’t arrive at the hospital until March 28^th, that’s like two days of travel!  Not including time changes, our journey will take well over 24 hours of continuous travel, that is going to be extremely hard on me but no one said this was going to be easy.

I know that my experience in India will be very different than the stem cell treatment I had in China.  The stem cell transplants were spread out over 6 separate procedures and I was in the hospital for a month.  The program in India is condensed into 2 procedures and only 2 weeks in the hospital.  I will have the “Liberation Procedure” first and stem cells injected into my jugular veins at the same time.  The next procedure is the actual stem cell transplant which is done in one operation rather than 6.  In China I was given an average of 15 million stem cells each time totalling less than 100 million cells.  This time I will receive 200 million stem cells but all in one shot!  This is the maximum amount allowable and they will all be cultured from my own body.  A vastly different approach than what I experienced in China but there will be some similarities for sure.  Some of the possible side effects that have been explained to me are the same but possibly intensified.  For example, in China I had to lay immobilized flat on my back for 6 hours after each transplant, that was very hard on me!  Well I’m in for a shock because I must be immobilized for 48 hours after the transplant in India!  I have to be lying down with my feet above my head for the entire time other than getting up for bathroom breaks and eating.  I'm not too sure how this is going to work out but I’m definitely not looking forward to it!  In China I had free time between treatments that allowed me to leave the hospital and go touring around, shopping etc.  Not this time, I’m told that my days will be full the entire time but if I feel up to it the staff will take me out during the final days for some shopping and sight seeing.  Lorelei will likely have time to experience more but in the end we are there for one purpose, to undergo medical treatment and not vacation.

Having been explained the possible side effects I know that I will have some pretty tough days.  Although I got through most of my transplants in China without incident, there were some extremely uncomfortable and painful post reactions.  The side effects range in duration and severity but I’m told the most critical can be post-dural-puncture headaches.  I experienced this in China and looking back at my blog from the time it was extreme pain, the only time I could recall in my adult life crying from physical pain.  I just pray that things don’t go down that road in India! 

The headaches can be very brutal as the central nervous system (CNS) adjusts to pressure changes after cerebrospinal fluid is momentarily drained by lumbar puncture.   200 million stem cells are then injected into the spinal canal and the cerebrospinal fluid is then returned and pushes the stem cells up the spinal canal and into the brain.  This creates great changes in the hydrostatic pressure of the CNS but it is impossible to know how severe the headaches will be and this can occur several hours or even several days after the lumbar puncture.  At least I’ll have my honey there to console me if problems do start!

Other noted side effects will vary depending on the level of ones disability.  For example, patients who are paraplegic may experience the return of rigid and spastic muscle tissue from a contractured to a flaccid state which is a normal response to the neural pathways making reconnections.  One patient that I spoke with experienced this, he was used to his legs being very spastic and his knees locking so he could stand up.  He was shocked post procedure when he tried standing and like a limp noodle he collapsed to the floor!  I’m glad that I have stayed active exercising my muscles to avoid muscle atrophy so hopefully this transitional phase will be easier on me.  It can be difficult to distinguish between side effects from the treatment and what some sceptics see as disease progression.  So far in every case patients have reported that this spasticity disappears once they return home.  Some patients have reported being very tired and feel they have regressed sometimes up to a month after returning home.  However it is now understood that what some patients see as regression is actually the spasticity relenting as the neural pathways are being reconfigured to the brain.  If certain muscles have not been used in a very long time they will need to develop muscle tone again and be able to handle the new loads as they are now available to the nervous system again.  Some patients report being very tired as this goes on but it is just the body needing rest as it goes through a new nerve growth phase. 

It is difficult if not impossible to know how each individual will react post procedure and results will vary.  The normal period of noticeable recovery begins between 60 and 120 days post procedure.  No one really knows what to expect exactly but I’ve been told to accept the fact that I will not experience straight-line recovery.  The actual fact is that no one knows how I’ll react and recover, no one but God that is.  Time will tell and I must be patient, stem cells have shown to have continued improvement for over a year.  Again no one really knows but the cells are not like batteries, they just don’t fade away and die.  It will take a lot of work on my part to reach the full potential of my recovery but of coarse I’m up for that challenge!  I’ve been told that physical therapy is key to ongoing improvement, for me that means exercising my body after I recover to retrain my lost muscle and brain connections. 

I’m not sure if I’ll be doing any blogs while I’m away but stay tuned for future posts and to follow my progress.  In the mean time I would like to thank everyone that has been and will be praying for me, it means so much to me.

GOD BLESS 

LC

YOU GOTTA BE KIDDING ME!!!

I’m in shock that this has happened to me again, just five days before I’m scheduled to leave for India I have been informed that my procedure must be postponed for 45 days!!!  Yes that’s right I’m not going for treatment as planned, totally bummed!  The Indian government’s National Accreditation Board for Hospitals and Healthcare Providers has set policies and procedural guidelines for Indian hospitals treating international patients and Noble Hospital was not accredited to conduct specific treatments including the Combination Therapy protocol for Multiple Sclerosis.  The CCSVI Clinic’s new facility provider Inamdar Hospital was approved for the clinic’s protocol, but is not yet ready to receive patients.  What a huge hassle and disappointment, just like in 2010 when my “Liberation procedure” was cancelled shortly before I was scheduled to leave because the New York hospital unexpectedly shut down Dr. Sclafani from performing any CCSVI procedures.  I am assured that my rescheduled date will be at the top of the list and that I will not be responsible for any additional costs. 

The medical director of the Indian clinic made this statement in his letter to me, “We want you to have every chance at a successful treatment and removing the regulatory obstacles just goes with the territory in any healthcare setting, even in Canada or the US. As you know, even in India, there is opposition to our therapies by many powerful forces led by the drug companies. Navigating the roadblocks that they have put in our path over the last three years has not been easy and this is just another example.” 

Yeah this crap even happens in foreign countries even though the positive outcomes continue to be reported.   Of the 16 patients treated between March and November of 2012 under the clinics new protocol, overall patients improved by a total of 47% according to an aggregate of 3 scales used over an average period of 155 days post therapy.  Average EDSS scores dropped from 6.0 to 3.5 and there have been no adverse events reported since the beginning of the study period.  Therapy protocols have now been developed for several acute clinical diseases including rheumatoid arthritis, ALS, Parkinson’s disease and retinitis pigmentosa.  Over 50 cases of diagnosed diseases were treated over the same period at CCSVI Clinic but they can’t be included in the aggregate of statistics for MS.

Just as with opposition to the new treatments (Liberation Procedure) pioneered by Dr. Zamboni,  powerful forces have come together in opposition to autologous stem cell therapies.  There has been a vast over exaggeration of the hypothetical risks that have little to do with how therapy is actually practiced.  The media has been silent for the most part reporting on these issues other than contributing to campaigns of misinformation and disinformation which is a complete disservice to patients suffering from numerous neurological disorders.

The FDA in the US has recently flexed its regulatory muscle by regulating therapies involving a patients own stem cells and shutting down biotech companies engaged in therapeutic stem cell treatments based on a recent decision by the US District Court.  The FDA calls the process from extraction to reinfusion of autologous stem cells “manufacturing, holding for sale and distribution of an unapproved biological drug product”.  GIVE ME A BREAK, they are calling and regulating a persons own stem cells a drug!  The FDA recently shut down a stem cell clinic in Houston citing the company was illegally marketing an unlicensed drug and targeting similar companies engaged in researching and offering therapeutic regenerative therapies.

This can be viewed as the FDA working with major pharmaceutical companies to restrict and create regulatory barriers for US based stem cell therapies.  Now combine this with the FDA’s own admission to fast track drug approvals and admitting to “expedite the approval of many of these products by streamlining clinical trial requirements to permit smaller, shorter or fewer studies wherever possible”.  These actions not only help the major drug companies financially by easing the costs of clinical trials but also help them licence drugs that directly compete with interventional stem cell treatments.  This isn’t just going on in the US, Canada and Europe are similarly under the negative influence of the media and regulatory authorities being driven by commercial interests attempting to maintain the status quo to the benefit of major pharmaceutical companies.

This is a travesty that we are allowing to take place right under our noses.  The financial interests of a few mega billion dollar corporations take precedence over the medical well being of millions of patients suffering the devastating effects of chronic neurological diseases like MS, Alzheimer’s, Parkinson’s and ALS.  Many of us suffering from these conditions are forced to live without hope, as our conditions worsen we don’t have the time to wait for a new drug, we need alternatives now!  I can’t think of a more unethical situation that we are forced to live with.  This is why we need companies like the CCSVI Clinic and Regenetek to come up with and fight for alternative treatments that just might help people struggling like me.

All that being said, I hold onto my enthusiasm and hope for the therapy in India.  Everything still rests on my faith in God, I don’t understand why He allows hiccups like this to happen but I must rely on my belief that it’s all part of His master plan.  I received an email with the following encouragement (thanks mom): 

For I know the plans I have for you says the Lord.  They are plans for good and not disaster to give you a future and hope.  Jeremiah 29-11

This is the attitude I must live by and is the ultimate source of my HOPE!  Perhaps my trip was postponed by divine intervention, maybe to prevent something horrible from happening.  I don’t know but I do believe there is a reason for everything that happens and so I must not let this become a source of discouragement.

My last fundraiser did not turn out as well as I had hoped but I can’t expect a lot when everything was organized in just over a week!  I knew there was very little time to hold another event but I said what the heck…why not?  In the end we raised another $1,525 which I’m totally happy with; it’s more money than I had the day before!  This brings the total raised to $21,750 but I’m still over $8,000 short from my goal of $30,000 so perhaps this is a reason for the delay.  Now that I have to wait for another 45 days I will have the proper amount of time to plan another fundraiser.  There just wasn’t enough time for my last fundraiser to get the word out to have more people show up.  It was still a good evening and I must give a shout out to my buddy Markus from Big Rock for organizing the donation of a keg and to Brett and Spider, owners of the Blind Monk, they are awesome guys!  I’m not sure where or what my next event will be but I will start planning now and recruiting more help.  It’s very difficult to organize a fundraiser with very limited help given my energy levels and physical impediments so I must start the process now.  Stay tuned for more details…

There are plenty of other issues going on with my health and otherwise but I think I’ve rambled on long enough for this blog so I’ll save it for my next one.

God Bless,

LC

NEW HOPE FOR A NEW YEAR

I can’t believe that it’s been almost a year since I’ve posted a blog!  That time sure went by fast; you know what they say “time flies when you’re having fun”!   Well I can’t say that this past year has been fun but it did fly by.  There were definitely some fun high lights throughout the year namely my wedding!  I got remarried on June 30^th and could not be happier with my new wife and family!  I feel so blessed to have Lorelei’s love and support and a whole new family to go along with it.  My in-laws are great, it’s truly amazing how well our families have blended, especially my immediate family.  What a difference going from having my children every second weekend to now having a family of six.  Even though we don’t have six in our household all the time it’s vastly different than being on my own.  I shouldn’t refer to my previous situation as being on my own because I was fortunate to have a roommate who turned into my best friend.  We had a good run for almost five years and I look back on those years with very fond and loving memories but now it’s time to build new ones!  I really can’t explain how fortunate we are that our families have melded together so well.  Our children get along great even with the vast difference in ages.  My oldest step son is now a young man of 18 while my youngest daughter is just about to turn 10!  (Wow double digits…another case of where did those years go?)  At any rate I could not be happier with my family, we are so very blessed!

Now the bigger question of what’s gone on with my health in the past year?  As I alluded to in my last blog, my MS symptoms and other health problems had been getting worse.  This is perhaps one of the reasons that I haven’t been writing, it’s difficult to get inspired when I feel my health on a slow decline.  It’s kind of the same old story just a continuation of my mobility issues, things have just remained on a gradual decline.  I’ve had two MRI’s in the last year and both were rather uneventful, no indication of new lesions and there has been very little change in terms of my MRI results.  Sounds like good news but this does not give a clear indication of disease progression because there has definitely been progression.  I had held steady for years at a 6 on the EDSS scale (expanded disability status scale is a method of quantifying disability in multiple sclerosis that goes from 1 which is no disability but minimal signs in one functional system to 10 which is death due to MS) but was informed by my neurologist during my last appointment that I am now a 6.5 to 7.  Once someone hits 7.5 they can realistically expect to be confined to a wheelchair full time and unfortunately this is where I see my progression leading.  I think most neurologists avoid expressing this kind of information unless you directly ask which I had to given how I’ve noticed the slow progression.

I’m not just dealing with mobility issues, my bladder and bowel problems continue to plague me and my eyes have never been as bad as they are now.  At times it feels like I’m in the midst of an attack but I know that’s just how things are going.  In addition to these problems, I am also having cognitive issues.  I definitely have memory difficulties and find it difficult to get anything accomplished.  I suppose there is a lack of focus and coupled with my lack of energy and fatigue it is hard at times to stay motivated.  When it comes to writing there has been a lack of confidence to focus my thoughts and put them to paper in any kind of coherent manner.  I am perhaps being too hard on myself in this area but the bottom line is that I haven’t had a lot of motivational factors to write about.  It is almost the end of 2012 so I figured I’d better get my head out of the sand and carry on!

Realistically other than the continuation of disease progression, things in my life have been mostly positive so I shouldn’t get down on myself.  I ended my last blog talking about starting to research stem cell therapy again.  Well it took about nine months for something new to intrigue me but it was worth the wait.  The evidence is still not conclusive one way or the other on CCSVI but I still maintain that it is definitely a very important piece of the MS puzzle.  What I found in the blogosphere in late September was something new created out of the old.  It is a CCSVI clinic using a combination autologous stem cell venoplasty.  In plain English they are doing the “Liberation procedure” in conjunction with stem cell therapy and have achieved remarkable results.  Of course this is not offered in North America so I’ll have to travel to India this time.  I am even more excited about this procedure than when I first learned of CCSVI!  Even though the procedure is new, as of December only 41 patients had been treated, they are showing phenomenal results.  As reported to me by the company heading up the procedure, “every patient seems to have had their disease turned off by the expression of proteins by the new stem cells.  This is what the research trials confirm should happen and it’s being seen therapeutically in our study as well”.

An example of the amazing results being achieved is Deb O’Connell a patient from Victoria who underwent the procedure in September.  She was a 9.5 on the EDSS scale (remember 10 is death due to MS) when she was admitted.  She could no longer speak, she couldn’t swallow properly and had feeding tubes inserted and was either bed ridden or in a wheel chair permanently.  Within four days of beginning treatment she regained the ability to speak and her feeding tubes were removed.  By the end of her two week program she actually walked out the front doors of the hospital!  Amazing but true, there is video evidence of everything!  She continues to progress, getting stronger and gaining weight and has effectively gone down on the EDSS scale from 9.5 on admission to the clinic to 6.5 as of last week.

Another patient from the U.S. named David Summers that I have personally spoken with was an 8 on the EDSS scale upon admission in March, essentially a paraplegic with no feeling below his waist.  Not only did most of his MS difficulties clear up, many of which I share with him like bladder issues and heat intolerance, but he is able to walk!  It is now ten months since his treatment and he hasn’t lost any of his improvements.  I last spoke with him yesterday and he is doing great.  He thought the stem cells had hit a plateau but just recently he has experienced new improvements in his hand, to the point that he can almost type normally. 

When I talk about these examples of people regaining the ability to walk I’m not implying that their walking is back to normal but from where they were to where they are now is truly miraculous!    One patient admitted at 4.0 and treated in June has had no symptoms since August or September, his neurological deficits are completely back to normal and he may be considered to be in remission.  These are phenomenal results that carry so much hope!  I was originally slated to enter the program on January 14^th but recently had it changed to February 18^th to give myself a little more breathing room to raise the money.  This time the treatment will cost me around $30,000 which is nothing considering the results that have been documented, however it is an amount that I can’t just write a cheque for especially in my current financial situation so I’m back to fundraising.  As I write this blog we are at $11,430 so I still have quite a ways to go.  Most of this money was raised in my first fundraiser which brought in an amazing $8,400!  What an exceptional event organized by an exceptional man named Travis Richardson.  The support and love that I have experienced from my Airdrie community has been overwhelming and I am so grateful.  It is only two months from today that Lorelei and I will be boarding a plane and heading for India so the pressure is on to come up with a lot more money.  Actually $17,000 is supposed to be paid to the clinic by January 18^th, 30 days before admission so the heat is on.  As always I’m not going to worry myself sick about it, my faith is strong!  If God opened this door for me then He will provide the means to make it happen.  If you’re reading my blog then chances are you already know about my website hopeforlee.ca where you can learn more about the procedure, the clinic and medical staff and most importantly make a contribution to my cause.

I started my blog years ago to keep people informed about my health and to raise money for promising and hopeful treatments to help me fight this terrible disease.  Now that I am starting out on another journey to health I will keep my posts more frequent so stay tuned for more.  Excited would be a major understatement to describe the myriad of emotions and thoughts racing through my head.  As I’ve always believed, never lose hope and at this time there really is HopeForLee!  As with previous treatments, I embark on this journey without major expectations other than stopping this disease from progressing any further but that doesn’t mean that I won’t hope and pray for much more.  What an awesome opportunity and for that I say,

PRAISE GOD!

LC

TIME FLIES

Wow four months goes by fast, that’s how long it’s been since I posted a blog! I actually meant to get one in before the end of 2011 but now that year is in the history books so…2012 here I come! I wish that had some kind of connotation that I was going to bolt out of the gate running at top speed but unfortunately that is not going to happen. On the contrary, I have slowed even further which is a disappointing way to start the New Year but none the less I do have many positive feelings for the coming year. For starters, I will be getting married in June which is a very encouraging and joyful experience. I must maintain my focus on the positives in my life otherwise I’m left to dwell on the negatives of which there are many. If I were to let myself become consumed with the pessimistic consequences of some of my health problems, I could easily fall into a discouraging downward spiral of depression. This outcome would suck even more than the actual health issues that I’m forced to deal with.

I left off my last blog describing the painful experience related to having a bladder stone and the associated discomfort that accompanies this problem. It was at the end of August that I was awaiting my urologist appointment to find out when and how I was going to get some relief. Well the relief I was anticipating would not come until I could get in for surgery to remove the bladder stone and the earliest opening for surgery wasn’t until September 9^th, another two weeks of misery! I told my urologist that there was no way I could handle the pain and distress of leaving the catheter in for that much longer and insisted that it must be removed. The outcome of removing the catheter was unknown but there was no other alternative in my mind. If I was still unable to urinate then I could find myself back to square one so if it was coming out I would have to be prepared to self catheterize. A very eerie and unpleasant thought but nothing compared to the crap I had gone through the previous couple of weeks. The day after my urologist appointment I was booked to be taught the self catheterization procedure and as uncomfortable as this was, I found great relief in knowing that I now had the ability to alleviate my pain on my own when necessary. After the catheter was finally gone my bladder function had returned somewhat and I could urinate on my own but problems remained and I did have to self catheterize at least once a day. I finally had surgery to remove the stone on September 9^th and things returned to a somewhat normal, albeit dysfunctional state. I didn’t feel the need to catheterize on a regular basis so I stopped but not for long. Within two months I began to see a type of sediment and strands of some form of mucus in my urine…problem not solved!!! On November 21^st I was back to my urologist and was booked for another procedure on November 29^th. This time only required a local anesthetic so the doctor could use a scope to look inside my bladder to see what was happening and sure enough there were plenty of mucus membranes floating around. The doctor sucked everything out but I still didn’t have any answers as to why this was happening. The best explanation was that if I wasn’t completely able to empty my bladder then particulate matter would form similar to letting a glass of sea water evaporate allowing salt to crystallize and form solid particles. My doctors solution to prevent this was to self catheterize on a regular basis so unfortunately this has become a regular routine. It really sucks but like most things, after a while it becomes second nature and not a huge deal. The discouraging part is that now well over a month later the sediment and particles are still there so I’m not sure that catheterizing is all that effective. I’m going to my family doctor next week to get further tests done; perhaps there is still a bladder infection that just won’t go away. I don’t know what is going on but I need to look for answers!

In addition to my bladder issues, I have experienced a worsening of some symptoms. My mobility issues continue to get worse; the spasticity in my legs has increased causing more difficulty with walking. Same old issues but I’m just having more problems moving my legs, picking up my feet and the speed at which I move is slower and more pronounced than ever. My balance never did recover to the point that I feel confidant and secure in certain situations or movements. I decided not to register for skiing this year because I know I don’t have the balance to maneuver a mono ski and I wasn’t very interested in any of the other options. This fact really does hurt because skiing was something that I enjoyed immensely however I’ll never give up and perhaps by next year things will change. You just never know so I won’t give up hope no matter how unlikely the prospect of significant improvement seems to be. The results of my last MRI showed no new lesions or obvious MS activity which is a positive yet I still feel progression in terms of my physical abilities. This hasn’t stopped me from continuing an active lifestyle. I still go to the gym and have recently been working with a trainer. It’s been really good because he pushes me to have a really good workout, same old mantra: use it or lose it! It’s nice to be able to freely work my upper body again, after 4 physical therapy sessions my sore shoulder and arm were finally on the road to recovery. I still try to accomplish certain tasks that I was once so proficient at but now seem hopelessly useless. For example I’ve been building some walls to create two new bedrooms in our basement. A seemingly simple job but not for me, not anymore that is. It’s so frustrating to not be able to accomplish things without help or to take ten times longer than what I would normally expect. On occasion I allow this to get under my skin creating a very negative impact on my emotional state. I’m only human and sometimes get overpowered by the frustration and disappointment of my lost ability to do certain things. I have caught myself in the “walking envy” state lately. This is where I’m watching someone do something as simple as strolling down the sidewalk, even if they use a cane, I can’t help but feel envious wishing I could move that well. I hit that wall one day after working in the basement and reflecting upon all that I have lost. It caused a temporary emotional breakdown of sorts, it happens very seldom but a good cry can be therapeutic. I don’t stay down long but it is a little refreshing to not play superman all the time. When I come back to reality it is encouraging to look at what I can still accomplish. I love tools and building or fixing things and I can still do a lot. The knowledge is still with me and even though I might need physical help I can still accomplish lots, in some cases more than many able bodied people. I got a garburator for Christmas and did the installation myself. Not a huge feat but one that a lot of people would never attempt let alone complete successfully.

2011 had some very positive aspects, as I’ve mentioned I now own a home again and have my children living with me 50% of the time. It’s wonderful to play a more active role in their lives although it does come with additional challenges. It is far more tiring than I thought, getting up early to get the kids out of bed and ready for school, making breakfast and lunches and sometimes just the nonstop action of two young ones constantly running around is extremely trying. I’m thrilled to have my children back but it’s a lot for a disabled parent to handle at times. I just have to remember my limitations, take a nap when I get some down time in the afternoon and not feel like I have to be able to do it all on my own. I just have to continue to take things one day at a time.

I’m not sure what 2012 will have in store for me health wise but having described the gradual progression that I have experienced, my self advocacy is kicking in again. Apparently there is a study taking place for a secondary progressive treatment but like always that’s not on a time horizon that is likely to benefit me. There is still much controversy over CCSVI and pros and cons for both sides. Research is moving forward at a good pace but the benefits of treatment are still all over the map. Premier Wall of Saskatchewan has recently announced that his government has allocated $2.2 million for 86 multiple sclerosis patients to participate in Phase II clinical trials into CCSVI, currently underway in Albany, NY. I believe that we are still a long way from coming to any definitive conclusions on CCSVI but it still holds great promise. In the meantime, I still can’t sit back waiting for something or someone to knock at my door with the promise of any significant help. I’ve decided to begin research into stem cell therapy again. There has been much advancement since 2008 when I went to China for treatment but no concrete successes. Stem cell treatment is now all over the internet and offered in many places around the world but caution is a must. Many programs have proven to be fraudulent so diligent research is required. Until I can fully immerse my head into the research again, I won’t make any claims or plans but it is time for me to search for my own help again. I’m not sure where this will lead me but as I said, I can’t just sit back and wait while my body and mobility continue to decline. My hope still rests in the saving grace of God but that doesn’t mean that I can just sit idle waiting for a miracle. I do plan on getting back to writing more so you should see my blog posts more frequent than during the last year.

Until next time…

LC

THE END OF AN ERA

It’s been a very long time since I’ve written a blog so naturally it’s going to be a long one so bear with me. It’s almost four years to the day that I found my life turned upside down; my wife was leaving me, our house was sold, I would no longer be with my children and facing a new life of being alone with a pretty bleak outlook for my immediate future. The Calgary real estate market was on fire, prices were through the roof which was great for the sale of our house but also translated into a very low vacancy rate and very expensive rent. $1,000 a month was about the maximum I could afford for rent and that would barely get a one bedroom basement suite which would not accommodate my children at all. I felt hopeless and screwed! I had met someone facing a similar situation and the opportunity for a roommate would solve some of my financial woes. The only problem was that he needed to live in Strathmore which would mean at least a 45 minute drive to see my kids and there were virtually no houses for rent. There was very little I could do so I turned everything over to God and He answered my prayer! In perfect timing I had met a great new friend and we had found a beautiful home with plenty of room for both of our children that was affordable! I was now living on my own in a great new pad, the bachelor life had begun.

It is also close to four years that my MS difficulties were becoming my new reality. Work was becoming very difficult on me leading to some very negative issues and I unwittingly found myself in my doctor’s office explaining my work problems and left with orders to take a week off. Things moved fast from here once the MS clinic was informed and my neurologist got involved recommending that I should be on disability. I didn’t even know if this was possible given that I had a preexisting condition and as it turned out I had just made it past the 2 year employment requirement to qualify, perfect timing again! Even though my income was reduced, with the income generated with the investment of the money from the sale of our house I was financially alright. Again the Lord hath provided all that I need!

I was now getting used to being on my own and living the life of a bachelor, albeit relatively tame. I had some negative experiences with women that led me to believe that I would not find a woman able to look past the MS and enter a serious relationship. Although this was disappointing and discouraging I was okay and kind of prepared for it since MS was the reason my wife left me in the first place. Life was good and I was enjoying my new found sense of freedom. This is when I began researching stem cell treatment and became determined to travel to China for the therapy. I had no idea how I was going to come up with over forty thousand dollars to do this but again relied upon my faith, prayers and guidance from God. In just over four months I had raised all the money and was on my way across the world on a journey of hope to alleviate some of the devastating effects of this terrible disease. It was a very successful trip even though I didn’t maintain any significant and lasting improvements. I lived through the ups and downs of this disease and always maintained a positive attitude and lived a happy life actually feeling blessed with all that I had (multiple sclerosis excluded).

Then came the best news that has ever hit the world of MS, the “Liberation Procedure” was discovered which offered great hope! Being a devoted and diligent researcher into anything MS, I learned of this advancement early on and quickly had a new goal! To undergo this new treatment was like winning a lottery but again I was determined to do everything I could to get the treatment. My goal was to make this happen within 6 months of learning about it which was extremely ambitious but I am a very strong-minded and optimistic person. I did get accepted for the procedure by a doctor in New York but he was shut down shortly after that. Not to be deterred, I was able to find another doctor to do the treatment however I would have to travel to Egypt! This was becoming a crazy time in my life but it was all good and positive changes were happening all around me. The fact that my children lived so far away was one situation that I was not happy with and the cause of much frustration. I had coped with this for close to three years until finally the opportunity came around to move closer. I would still live with my roommate but my monthly expenses would actually decrease, I had a great house on a beautiful piece of land located only 10 km from my kids! It was so much more convenient and I was able to spend a lot more time with my kids. This was turning into a pretty crazy spring full of unexpected but glorious opportunities! Then the best development I could have ever hoped for occurred, I met a beautiful woman who was sincerely interested in me! We seemed like a perfect match right from the start which solved another looming problem for me…I now had someone to travel with me to Egypt. We had an awesome trip together and I underwent the “Liberation Procedure”, one month sooner than my original goal of 6 months. It was amazing to me how God was working in my life and even though I didn’t experience the remarkable improvements that some MS patients had, I did see benefits and who knows what the future holds.

It took over 3 years for my life to turn around from the disastrous day that I had to leave my home, my children and life as I knew it. Now at the four year mark things are happening that I never dreamed possible. I never thought I would marry again but I’m now engaged to a fabulous woman and I’ve truly found love again! I never thought I would buy another house yet in one week I’ll be moving into our beautiful home! I had given up on the idea of ever having my children live with me again but now I will have shared custody and enjoy a loving home with my kids again. Things have completely turned around from that day of hopelessness and anguish and through it all I never lost my faith or trust in God, I have always been thankful for the blessings I have received. All I can say is, God is great! So life as I have known it for the last four years is about to change again, hence the end of an era and a new one begins!

Now for my health update…I’ve been holding my own throughout the summer but there have definitely been ups and downs. There have been times that I have endured much grief because of the neurological pain in my chest/arm that I have described before. This has been a different experience though, it had changed from the temporary sharp stabbing feeling to a more dull but constant soreness. At times this would be with me for well over a week but it would still come and go. It is uncommon for me to live with this type of continual pain due to MS but fortunately it is on and off and it hasn’t bothered me for a long time now. I have been working out but not the way I want. I’ve had a nagging injury with my right arm and shoulder that has bothered me for several months now and has put severe limits on what exercises I can do. It hurts too much to even do a push up so my upper body exercises have really suffered. I have been using massage and just hoping that it will eventually heal but this isn’t happening so I’ve decided to start physiotherapy. If it doesn’t start to get better soon my doctor will send me for an MRI.

Outside of that I’ve just experienced the usual MS issues that I’ve dealt with for years but no attacks or serious progression. Just recently I have gone through some severe agony however this is not solely related to MS. I have a kidney stone; well it’s in my bladder now so I’ll call it a bladder stone. It is common for this to be associated with a lot of pain; they say it’s the closest comparison for a man to understand the pain involved with child birth. My agony has not actually been related to the passing of the stone but rather the associated complications. The stone is 1.1 cm in diameter so definitely too large to pass. My doctor wasn’t sure how long it would take to get me into a urologist so she said if it gets bad go to emergency and they will have to deal with it. Well trouble began the next day so I found myself in emergency but fortunately they brought me in right away. I was having difficulty urinating, getting any kind of stream going which is not totally uncommon with my MS bladder issues but this was unlike any MS problems that I have had in the past. After consulting with the MS clinic the doctor concluded that my problem was more likely related to MS than the stone so he sent me away to just live with it until I saw the urologist and I already had an appointment scheduled with my neurologist in September. So I went home but found myself sitting on the toilet for over one and a half hours trying to urinate but I could not get anything out, not even dribbles! This was becoming very painful so I rushed back to emergency expecting to get back in right away considering I still had the hospital bracelet on from earlier…no such luck! It was quite busy now so I was sent to the waiting room rocking back and forth on my scooter in pain. This was becoming more than discomfort, I was reeling in pain and after close to two hours of this I couldn’t take it any longer! I went back to the admitting desk to ask if I could just get a catheter kit and I would do it myself, I was in so much agony that I was totally serious. My distress was now obvious so she made a call and told me to wait down the hall and a nurse would be out in 5 or 10 minutes. It was going on about 5 hours that I just couldn’t go so you can imagine how much I was hurting so when the nurses finally had me in a room I wasn’t interested in their explanations of what was going to happen or any attempt to alleviate the tension or nervousness that any guy would naturally feel about the traumatic procedure that was about to occur…I didn’t care, just stick it in was my attitude! Finally some relief, it was torture! Actually this was a means of torture used by Caligula one of Rome’s most tyrannical emperors, now I can directly understand how terrible that dude really was!

After I finally found relief I wasn’t allowed to leave until the doctor came around, frustrating because this took almost 2 hours! I had informed them that my urologist appointment was set for August 25^th and when the doctor finally came he told me that I would have to leave the catheter in until I saw the urologist. You’ve got to be kidding me, that was 8 days away!!! This all happened the day before my 43^rd birthday…what a happy birthday this was going to be. I now have two days of suffering left, and suffering is an accurate description. The irritation and pain caused by a tube inserted into what is an extremely delicate and tender part of the male anatomy is real and has not left me since day one! I spoke with the MS clinic for a second opinion and because I was worried that having a catheter in for so long might negatively impact my already dysfunctional bladder muscles but the consensus was that it would be alright and was the best plan of action if I could handle the pain and discomfort. This urologist better have some relief for me! Hopefully the stone is the major factor rather than an MS issue and it can be taken care of quickly.

So having explained some of my newer health problems, some of which are not even MS issues, it would be natural to assume that I would be upset, frustrated and even mad. However by now you must know that my belief system categorizes those feelings as counterproductive, negative and even harmful. Don’t get me wrong, I’m not superhuman and I am choked, disappointed and fed up! I have enough problems to deal with as it is. It’s already difficult enough to exercise and workout, why must I endure additional problems that make it even harder? I have enough pain issues, why pile even more on me? I’ve coped with bladder and bowel issues for years, why not just add some more to it? Seriously, I have enough problems, why must God continue testing me and pushing my breaking limits? Of course I don’t have that answer but things keep happening that force me to ask the question again and again! I suppose it builds my resolve and reinforces and builds my faith even stronger. This has been my situation for many years; shit happens now deal with it!

Going back to the first part of my blog is what gets me through it. I realize how God is working in my life and how blessed I am. Look at how He has turned things around in my life, taken me from a state of complete brokenness and hopelessness to a state of happiness where I can feel grateful and find joy and peace. It’s a lot to go through and a lot that I just can’t understand but fortunately my belief is solid that it’s all in God’s plan and He most assuredly does understand and to that I must say: PRAISE GOD!

LC