It’s been about three weeks since my last blog and there’s been a lot happening. In terms of my health, not so good, I still haven’t stabilized. My walking has really become awkward and deliberate, I still try to walk a little but it is painfully slow. Since this started about three months ago, I have to classify the sustained decline in my functional ability as progression rather than a relapse that I would recover from. It’s more difficult to get around than I can remember in a very long time. If I compare myself to one year ago, it’s night and day. Now that I’ve got the benefit of hindsight, I had great improvement post stem cell treatment. This has changed because the disease has become active again and I can feel things going on now!
It’s actually more than my walking difficulty and sort of weird because I haven’t really experienced these symptoms in the past. One of them being my vertigo issues that I’ve described. I guess I’ve become a little used to it now but I have never experienced a prolonged occurrence like this. Sure on the odd occasion everyone will get a dizzy spell but they go on throughout the entire day for me. I know to stabilize myself before getting up to stand and simple precautions like this have kept me from many falls but again add to the forces that slow me down. The MS clinic thought that there might be some underlying causes to my dizzy spells aside from the MS like low blood pressure. I saw my doctor last week and my BP was 120/80 in both standing and laying down positions, exactly where a completely normal healthy individual should be. If you disregard the disease, I have always been very healthy but unfortunately, it’s impossible to disregard multiple sclerosis.
A new symptom entirely has crept up to cause great displeasure at times, it’s not painful but like many other symptoms annoying and extremely uncomfortable. Strangely enough it has to do with my toes, they are sort of cramping up but only in feeling because they appear normal. If you can imagine a hawk’s talons as he holds onto something he’s swooped down to grab, his grip would be very powerful. This is the feeling I experience primarily in my left foot, as if my toes are curled up and clenching onto something for dear life but they’re not curled up at all! It’s another one of those mind over matter things that I have to try to ignore or else let it drive me crazy. I can try to massage my foot and toes for relief but it is something new that I can’t get rid of by popping a pill. I thought I had experienced some strange sensations before but not like this.
Unfortunately I’m still dealing with all of the same problems that have plagued me forever like my eyes, the constant buzzing and vibrating feelings in my lower body and the severe spasticity in my legs. Actually the increased spasticity in my legs is the largest contributing factor to my walking difficulties. I’ve reverted back to the straight legged walk and many of the improper movements that I learned to correct through my physical therapy. Walking up stairs improperly swinging my hip or leg to the side has almost become the norm again and picking up my feet as I walk is very difficult. I really have to concentrate when I’m outside because this is how I can trip on a small stone. Inside is a different story, I let my feet drag because they slide along the carpet or hardwood floors easy but oddly enough this can cause me to fall too. For instance, if something was spilt on the floor and not cleaned up properly a sticky film will remain. As I come along with my feet sliding and run into the sticky patch, my forward motion is stopped and you guessed it, down I go or very close to.
So because I can feel this progression happening right now, the urgency I feel to have the liberation procedure has grown. There are now several foreign clinics that offer testing and treatment for CCSVI like India, Poland, Bulgaria and the one I have been talking about in Mexico. I would want to check out these programs and doctors very thoroughly but fortunately I was just accepted into the U.S. clinic I spoke about in my last blog. When my MS blogger buddy forwarded the contact info to me I phoned the office right away to get myself on the treatment list. I wasn’t sure that I’d move forward with this treatment facility but figured it can’t hurt to register my name. Well I got a call last Friday from the doctor’s patient coordinator to inform me that I was on the treatment list and they needed to schedule me in or take me off the list. Problem was that I had to confirm my spot in line by Monday or I would lose my place. She was very kind and apologetic about having to pressure me into such an important decision but if I didn’t take the spot there was someone right behind me waiting for it. When I first learned about this doctor I was aware that he was performing the procedure on the quiet which is why I didn’t release any information. Shortly thereafter the doctor’s name was revealed over the internet and almost immediately his office was inundated with phone calls and emails causing a complete halt to new bookings. Because I had secured a spot by calling early I was still offered the treatment but had to make a decision by Tuesday morning. There was a lot to consider because I knew I wouldn’t have any insurance coverage and the additional expense of flying to New York and staying in a hotel for a week would be costly. I was also waiting to hear more information on the treatment facility in Mexico before deciding where to go. It wasn’t until Monday evening that I received enough information on the Mexican clinic to make a decision and in the end I chose to stay with the New York doctor. First thing Tuesday morning I called his office to inform them I was going ahead with the treatment, she asked me when I would like to book the procedure to which I answered “your first available opening”! This happened to be the week of June 7th so I told her to sign me up and now I’m booked to undergo the liberation procedure! All of the details have yet to be worked out but at least I know I have a confirmed date.
I first stated my objective of being tested and treated for CCSVI within six months in my February 4th blog so I’m extremely pleased that I will have achieved that goal in only four months! Praise God, I cannot believe it’s happening so fast. So many pieces of this puzzle came together without effort and planning on my part. The fact that I received the contact info without even asking (thanks Lew), I called to get my name on the list just in time and was able to schedule the treatment whereas many others were put off, the good Lord in His perfect timing has worked out a financial blessing that will enable me to afford the procedure, and although not confirmed yet even my travelling expenses will be provided for! It’s amazing how this is all coming together and to see how God has been working in my life assembling the pieces of the puzzle in His perfect way without causing me any stress or angst. I truly feel blessed!
As was the case with my stem cell transplants, I’m going into this experience without any lofty expectations other than stopping the progression. I hope to see some improvements like a decrease in fatigue or an abatement of my vertigo and other problems that have been troubling me. Notable health improvements have been experienced post procedure but no one can claim they know what to expect. Again, this is in God’s hands but my prayer is that the treatment will successfully halt the progression that I have experienced recently. I will include more details about my treatment as I learn more and get closer to the date. I have followed the experience of two MS bloggers that have undergone the treatment by this New York doctor and while it is too early to assess any results, both men are completely happy that they had the procedure. I have heard nothing but praise for the doctor and his experience and accolades are very impressive. I consider myself extremely fortunate to be in line for the liberation procedure and realize that many MSers will be watching my experience closely but feeling very envious. The good news is that testing and treatment for CCSVI is really gaining traction albeit not very fast in Canada. Of course we all want more research confirming an association with MS but for many of us time is critical and I think that in the short term as the benefits of treatment are documented, the medical establishment will have to open its eyes and get out of the proverbial box. The story really is dynamic and evolving quickly which is why I believe our hope is solid and stronger than ever!
LC
Friday, March 26, 2010
Tuesday, March 2, 2010
BEAT UP...BUT HAPPY!
Picking up speed but still on the BUNNY HILL
My volunteer's heart is not in her throat yet!
My dedicated CADS volunteers
Click on the picture to blow up my beat up face
My ski season ended last Friday, what an evening as you can kind of see from the pictures. I had my kids again for the weekend so I asked a friend to watch them Friday evening while I went skiing. She has two boys the same age as my children so it’s a very good babysitting exchange. We arrived in Airdrie around 4:30 pm and my friend had ordered pizza for dinner. An unfortunate incident occurred at the end of my first slice, as I bit into the crust I heard that gut wrenching cracking sound from within my mouth. My friend immediately turned to me with a look of anguish in her face; she asked if my tooth was all right because that did not sound good. Initially I thought I had just bitten into something that shouldn’t have been in that crust and thought everything was okay. I spit out the small amount of food remaining in my mouth and my tongue could not feel any damage so I began my second piece. After a few seconds my tongue was back to feeling around and once I had the food cleared away I discovered that my tooth was indeed damaged. The inside edge of my tooth felt very rough and uncomfortable, I began digging around in the tiny bit of chewed up food I had spit out. This really grossed out my friend but I needed to find what it was that I bit into. Turns out I couldn’t see anything hard that would have caused this but I did discover a white piece of porcelain shaped like a shark tooth that just happened to be the inside layer of my tooth that had chipped right off! I believe this was a crown I had done in the last year so hopefully my dentist will cover the repair. I was lucky enough that I didn’t expose a root and there is not a lot of pain so I can continue to eat albeit very tentatively. I cannot get back into the dental office that did the work until March 11th so hopefully it will not become a bigger problem by then.
This was not a positive note to start my last night of skiing but I was off to COP anyway. After all, it was the last lesson of the season and I wanted to have a good showing. One of my instructors was enquiring about how I felt after last week and a couple of good falls that I took. My shoulders were a little sore and early on in the week, I had a headache for two days that had started instantly after smacking my head in one of my wipeouts. It wasn’t serious and did not pose any difficulty throughout the week so I was ready to go although Cheryl one of my volunteers was concerned about a possible concussion. I assured her that I was fine so we headed out to get strapped in and up the chair. I had explained some of the problems I faced the last time out like total fatigue setting in on my last run and increased balance issues due to dizzy spells. Cheryl thought I should do a practice run before going to the top but I declined and my other instructor agreed. Cheryl is very sweet and concerned with my safety; she has a real motherly instinct and worry mechanism that kicks in. She tells me that her heart jumps up into her throat every time she sees me picking up too much speed!
I was actually concerned myself because my dizzy spells had increased throughout the last week so I wasn’t sure how well I’d be able to handle the sit-ski. Things went relatively smooth on my first run down; it was my second run that things got a little sketchy. I started from the top in great form but about a third of the way down I took a tumble, actually quite an impressive wipeout! I was also skiing with another volunteer on his sit-ski who analyzes my runs, his comment to me was that my first eight or so turns got a 10 but my crash only earned me a 6. I thought it should have been better because I did a complete face plant! After getting my ski upright again, I assumed that I just had snow and ice dripping from my face but it turned out to be blood! After Cheryl tenderly tried to wipe the blood from my face, I was off again until about three quarters of the way down when I bit it again. Ironically, I did another face plant but this time I was awarded a 9! I have had many falls but this was the first night that I actually did a face plant! It didn’t seem as bad as my first fall but I was happy to increase my artistic score. When I got to the bottom there were several CADS volunteers that came by to talk about the run and have a little chuckle. The resulting appearance of my bloodied face looked much worse than the actual fall and like I said, I couldn’t even tell that I was bleeding. I’ve always considered myself to be a rough and tumble type of guy so these wipeouts did not faze me and after one of the volunteers patched me up with a bandage on my nose, away we went back up the chair. My next run did not work out very well, I was hitting the fatigue factor and my head was spinning a little. About half way down my instructor decided to strap the tether onto the back of my sit-ski to get me the rest of the way down safely. I actually did not mind the bashed up face, it was my final night of skiing and would leave me with some lasting memories, and I still had a blast!
Now onto what’s been going on with my body. Life with MS has become increasingly difficult lately but I continue to push onward, like skiing for example. I was concerned about the effectiveness of my last course of high dose steroids because I was not having a severe attack. As it turns out the prednisone had a very limited positive result because my symptoms have not really subsided and I have experienced increased and new problems. As I wrote in my last blog, I did see an increase in energy and my legs did seem to get stronger but these improvements were not significant enough to outweigh the negative impact that this attack is still having. Perhaps the steroids prevented an extreme escalation in my symptoms but no one can say for sure. At any rate, I finished the prescription, I’m still mobile, and functioning well, which is a positive. I am still finding my coordination difficult and my walking is slower and more awkward than it’s been in a long while but I am hoping things will level off. The more troubling problem is with my vertigo and this is somewhat new for me. I am getting dizzy spells more frequently than I ever have and it’s a little weird. Not that I haven’t experienced this before but they are more pronounced and difficult to overcome. When I get up from lying down it hits me instantly and sometimes lying down will bring it on. I haven’t experienced this situation since my late teen years when I was discovering alcohol and the infamous bed spins! Sometimes looking up at the ceiling or sky will trigger the effect and simply standing up quickly or turning my head to look behind me will bring it on. Unfortunately there isn’t anything I can do to stop this, I just have to be careful and cope with the situation.
I am now quite concerned because I seem to be far from stabilizing. Fortunately skiing did end last week because I’m not that confident that I could continue as certain symptoms seem to worsen, the most problematic being my vertigo issue. My dizzy spells are very frequent and my walking ability has really deteriorated. I am used to being very slow but slow has now taken on a new meaning. For example, yesterday I was at Shoppers Drug Mart to pick up some vitamin E oil to apply to my facial abrasions now that scabs are forming, the difficulty I had walking was painfully obvious to the clerk. As of late it is unusual for me to walk into a store, I can unload my scooter in about 30 seconds but to walk as little as 100 feet can take up to 5 minutes. When my mobility issues are this obvious it is common for store personnel to quickly offer me assistance. In this case the clerk opened up the cosmetics register so I would not have to walk around to the regular tills. I struck up a very friendly conversation with her explaining what happened to my face, she was extremely encouraged by my attitude and desire to live a fulfilling life considering the kind of shape I was in. I enjoy talking to people about my situation and I’m always open about my MS, it makes me feel good to know that I inspire others.
I have received several email and Facebook comments recently from people responding to my blogs with the common theme being how surprised people are that I can remain so positive. As I’ve explained, it all stems from my faith in God but don’t be fooled, it’s not easy! When I’m facing difficult circumstances like I am now with continuing progression and problems, it’s easy to get discouraged. I am fortunate to have support and prayer from so many people and this keeps my will strong however the unknowns are still scary. Beginning around January I started to notice new and worsening symptoms that seemed to slowly get worse. If you have read my blog you know what’s been happening up to this point and regrettably it’s not good. I used to see the decline occur slowly week to week but now I can almost trace it day to day! It is a very uncomfortable and helpless feeling not knowing where or when things will stop or at least stabilize. I guess it just goes part and parcel with the disease and this in turn strengthens my resolve and determination to find treatment.
In February the Buffalo results were released and I’m happy to report that they were positive showing 55% of participants with MS were found to have CCSVI while 26% of participants without MS were found to have the condition. Looking at different interpretations of the data, when 10% of participants showing borderline results were excluded, over 62% of MS patients had CCSVI. The bottom line is that the study showed a direct correlation between multiple sclerosis and CCSVI and will promote a tidal wave of further research. When you look at the anecdotal evidence of treatment for CCSVI the picture looks even more promising even though it isn’t considered to be scientific. When reviewing patient reports from those treated for CCSVI from Dr. Zamboni, Dr. Dake and Dr. Simka, the vast majority of patients reported notable improvements in their health status and I do not think this can be overlooked.
Even though there will be a ton of new research underway, the fact remains that treatment in Canada will still not be readily available for years. Given what has been happening with me lately, I don’t have that kind of time and my goal of being tested and treated within six months is progressing. I don’t have any further information on the local doctor that is working on CCSVI but I do have other irons in the fire. I was informed of another doctor in the U.S. that is doing the treatment and have been in contact with his office. This doctor is doing things on the QT right now so I won’t talk about any specifics yet. Since I’m from Canada it is very unlikely that I will get any help from insurance or Alberta Health but the treatment will not cost anything like the $80,000 quoted by Dr. Dake. They have not come up with a fee structure yet but they will contact me very soon and I am on their list for treatment. In addition to this, the foreign clinic I spoke of earlier is now ready to roll but they are not set up for stents yet. My contact will be going to Mexico within the next three weeks to finalize details but I’m told I am on the A list and that I’ll be taken care of. I still don’t know how things will play out for me but I will leave it in God’s hands and live in peace knowing things will work out for me.
I know that there are already clinics operating in several different countries offering testing and treatment for CCSVI so there is a lot of hope out there. Even though I feel some desperation in my situation, I will fully investigate the doctors and procedures before opting for any treatment. The required protocols are now becoming widely accepted so things are moving in the right direction and actually at an unprecedented pace! We still have a ton to learn about CCSVI and how it relates to multiple sclerosis but the wheels are now turning and I believe there is real hope for those of us suffering from this devastating disease.
LC
My volunteer's heart is not in her throat yet!
My dedicated CADS volunteers
Click on the picture to blow up my beat up face
My ski season ended last Friday, what an evening as you can kind of see from the pictures. I had my kids again for the weekend so I asked a friend to watch them Friday evening while I went skiing. She has two boys the same age as my children so it’s a very good babysitting exchange. We arrived in Airdrie around 4:30 pm and my friend had ordered pizza for dinner. An unfortunate incident occurred at the end of my first slice, as I bit into the crust I heard that gut wrenching cracking sound from within my mouth. My friend immediately turned to me with a look of anguish in her face; she asked if my tooth was all right because that did not sound good. Initially I thought I had just bitten into something that shouldn’t have been in that crust and thought everything was okay. I spit out the small amount of food remaining in my mouth and my tongue could not feel any damage so I began my second piece. After a few seconds my tongue was back to feeling around and once I had the food cleared away I discovered that my tooth was indeed damaged. The inside edge of my tooth felt very rough and uncomfortable, I began digging around in the tiny bit of chewed up food I had spit out. This really grossed out my friend but I needed to find what it was that I bit into. Turns out I couldn’t see anything hard that would have caused this but I did discover a white piece of porcelain shaped like a shark tooth that just happened to be the inside layer of my tooth that had chipped right off! I believe this was a crown I had done in the last year so hopefully my dentist will cover the repair. I was lucky enough that I didn’t expose a root and there is not a lot of pain so I can continue to eat albeit very tentatively. I cannot get back into the dental office that did the work until March 11th so hopefully it will not become a bigger problem by then.
This was not a positive note to start my last night of skiing but I was off to COP anyway. After all, it was the last lesson of the season and I wanted to have a good showing. One of my instructors was enquiring about how I felt after last week and a couple of good falls that I took. My shoulders were a little sore and early on in the week, I had a headache for two days that had started instantly after smacking my head in one of my wipeouts. It wasn’t serious and did not pose any difficulty throughout the week so I was ready to go although Cheryl one of my volunteers was concerned about a possible concussion. I assured her that I was fine so we headed out to get strapped in and up the chair. I had explained some of the problems I faced the last time out like total fatigue setting in on my last run and increased balance issues due to dizzy spells. Cheryl thought I should do a practice run before going to the top but I declined and my other instructor agreed. Cheryl is very sweet and concerned with my safety; she has a real motherly instinct and worry mechanism that kicks in. She tells me that her heart jumps up into her throat every time she sees me picking up too much speed!
I was actually concerned myself because my dizzy spells had increased throughout the last week so I wasn’t sure how well I’d be able to handle the sit-ski. Things went relatively smooth on my first run down; it was my second run that things got a little sketchy. I started from the top in great form but about a third of the way down I took a tumble, actually quite an impressive wipeout! I was also skiing with another volunteer on his sit-ski who analyzes my runs, his comment to me was that my first eight or so turns got a 10 but my crash only earned me a 6. I thought it should have been better because I did a complete face plant! After getting my ski upright again, I assumed that I just had snow and ice dripping from my face but it turned out to be blood! After Cheryl tenderly tried to wipe the blood from my face, I was off again until about three quarters of the way down when I bit it again. Ironically, I did another face plant but this time I was awarded a 9! I have had many falls but this was the first night that I actually did a face plant! It didn’t seem as bad as my first fall but I was happy to increase my artistic score. When I got to the bottom there were several CADS volunteers that came by to talk about the run and have a little chuckle. The resulting appearance of my bloodied face looked much worse than the actual fall and like I said, I couldn’t even tell that I was bleeding. I’ve always considered myself to be a rough and tumble type of guy so these wipeouts did not faze me and after one of the volunteers patched me up with a bandage on my nose, away we went back up the chair. My next run did not work out very well, I was hitting the fatigue factor and my head was spinning a little. About half way down my instructor decided to strap the tether onto the back of my sit-ski to get me the rest of the way down safely. I actually did not mind the bashed up face, it was my final night of skiing and would leave me with some lasting memories, and I still had a blast!
Now onto what’s been going on with my body. Life with MS has become increasingly difficult lately but I continue to push onward, like skiing for example. I was concerned about the effectiveness of my last course of high dose steroids because I was not having a severe attack. As it turns out the prednisone had a very limited positive result because my symptoms have not really subsided and I have experienced increased and new problems. As I wrote in my last blog, I did see an increase in energy and my legs did seem to get stronger but these improvements were not significant enough to outweigh the negative impact that this attack is still having. Perhaps the steroids prevented an extreme escalation in my symptoms but no one can say for sure. At any rate, I finished the prescription, I’m still mobile, and functioning well, which is a positive. I am still finding my coordination difficult and my walking is slower and more awkward than it’s been in a long while but I am hoping things will level off. The more troubling problem is with my vertigo and this is somewhat new for me. I am getting dizzy spells more frequently than I ever have and it’s a little weird. Not that I haven’t experienced this before but they are more pronounced and difficult to overcome. When I get up from lying down it hits me instantly and sometimes lying down will bring it on. I haven’t experienced this situation since my late teen years when I was discovering alcohol and the infamous bed spins! Sometimes looking up at the ceiling or sky will trigger the effect and simply standing up quickly or turning my head to look behind me will bring it on. Unfortunately there isn’t anything I can do to stop this, I just have to be careful and cope with the situation.
I am now quite concerned because I seem to be far from stabilizing. Fortunately skiing did end last week because I’m not that confident that I could continue as certain symptoms seem to worsen, the most problematic being my vertigo issue. My dizzy spells are very frequent and my walking ability has really deteriorated. I am used to being very slow but slow has now taken on a new meaning. For example, yesterday I was at Shoppers Drug Mart to pick up some vitamin E oil to apply to my facial abrasions now that scabs are forming, the difficulty I had walking was painfully obvious to the clerk. As of late it is unusual for me to walk into a store, I can unload my scooter in about 30 seconds but to walk as little as 100 feet can take up to 5 minutes. When my mobility issues are this obvious it is common for store personnel to quickly offer me assistance. In this case the clerk opened up the cosmetics register so I would not have to walk around to the regular tills. I struck up a very friendly conversation with her explaining what happened to my face, she was extremely encouraged by my attitude and desire to live a fulfilling life considering the kind of shape I was in. I enjoy talking to people about my situation and I’m always open about my MS, it makes me feel good to know that I inspire others.
I have received several email and Facebook comments recently from people responding to my blogs with the common theme being how surprised people are that I can remain so positive. As I’ve explained, it all stems from my faith in God but don’t be fooled, it’s not easy! When I’m facing difficult circumstances like I am now with continuing progression and problems, it’s easy to get discouraged. I am fortunate to have support and prayer from so many people and this keeps my will strong however the unknowns are still scary. Beginning around January I started to notice new and worsening symptoms that seemed to slowly get worse. If you have read my blog you know what’s been happening up to this point and regrettably it’s not good. I used to see the decline occur slowly week to week but now I can almost trace it day to day! It is a very uncomfortable and helpless feeling not knowing where or when things will stop or at least stabilize. I guess it just goes part and parcel with the disease and this in turn strengthens my resolve and determination to find treatment.
In February the Buffalo results were released and I’m happy to report that they were positive showing 55% of participants with MS were found to have CCSVI while 26% of participants without MS were found to have the condition. Looking at different interpretations of the data, when 10% of participants showing borderline results were excluded, over 62% of MS patients had CCSVI. The bottom line is that the study showed a direct correlation between multiple sclerosis and CCSVI and will promote a tidal wave of further research. When you look at the anecdotal evidence of treatment for CCSVI the picture looks even more promising even though it isn’t considered to be scientific. When reviewing patient reports from those treated for CCSVI from Dr. Zamboni, Dr. Dake and Dr. Simka, the vast majority of patients reported notable improvements in their health status and I do not think this can be overlooked.
Even though there will be a ton of new research underway, the fact remains that treatment in Canada will still not be readily available for years. Given what has been happening with me lately, I don’t have that kind of time and my goal of being tested and treated within six months is progressing. I don’t have any further information on the local doctor that is working on CCSVI but I do have other irons in the fire. I was informed of another doctor in the U.S. that is doing the treatment and have been in contact with his office. This doctor is doing things on the QT right now so I won’t talk about any specifics yet. Since I’m from Canada it is very unlikely that I will get any help from insurance or Alberta Health but the treatment will not cost anything like the $80,000 quoted by Dr. Dake. They have not come up with a fee structure yet but they will contact me very soon and I am on their list for treatment. In addition to this, the foreign clinic I spoke of earlier is now ready to roll but they are not set up for stents yet. My contact will be going to Mexico within the next three weeks to finalize details but I’m told I am on the A list and that I’ll be taken care of. I still don’t know how things will play out for me but I will leave it in God’s hands and live in peace knowing things will work out for me.
I know that there are already clinics operating in several different countries offering testing and treatment for CCSVI so there is a lot of hope out there. Even though I feel some desperation in my situation, I will fully investigate the doctors and procedures before opting for any treatment. The required protocols are now becoming widely accepted so things are moving in the right direction and actually at an unprecedented pace! We still have a ton to learn about CCSVI and how it relates to multiple sclerosis but the wheels are now turning and I believe there is real hope for those of us suffering from this devastating disease.
LC
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