Friday, November 27, 2009
Have a great day and weekend
From the Executive Officer,
Thanks to support from coast-to-coast, we were able to reach 97 percent of Members of Parliament in June 2009 and let them know what is needed to improve incomes for people affected by MS and to help end MS through increased health research funding.
The other good news is that two MPs have agreed to sponsor private member’s bills to improve income security for people with MS and caregivers. I’ll provide more information when the bills are closer to being introduced about how you can help.
The MS Society of Canada’s request is for some simple changes to support people with MS, their families and caregivers.
Immediate help for caregivers by allowing their spouses to claim the Caregiver Tax Credit
Helping people stay at their jobs by making Employment Insurance sickness benefits more flexible to allow part-time work and partial benefits
Making the Disability Tax Credit refundable– to put money in more people’s pockets
The ultimate goal, of course, is to end MS. So we are also asking the federal government to increase funding for health research – with a commitment of new funds to make research happen in 2010. Click here to learn more about these issues.
And if you would like to make a donation to support vital MS Society research and crucial services for people affected by MS, just click here.
Thank you for making a difference.
Yves SavoiePresident and Chief Executive Officer Multiple Sclerosis Society of Canada
P.S. You may have seen news coverage of a CCSVI (chronic cerebrospinal venous insufficiency) study that might have an impact on people with MS. To learn more about the study and its implications, visit our website.
Mr. Yves Savoie November 27, 2009
I would like to begin by taking the opportunity to thank you for the work you are doing to help those of us suffering from multiple sclerosis.
Perhaps the following could be investigated to determine if what I deem as age-based discrimination against those of us who require it most.
As one of the most common neurological diseases affecting young people today I am certain you are aware that the average age of onset for multiple sclerosis is approximately 37 years. It is also documented that for the majority of people affected by this disease most will require some type of assistive device 15 years after being diagnosed. Applying to receive the disability tax credit varies greatly depending on one's level of disability.
I was quite excited when the government of Canada announced the disability savings Grant and Bond it appeared to assist in providing financial support, when one considers that contributions to non-defined pension plans usually stop when someone becomes disabled this program would ultimately provide for a reasonable retirement. Upon further investigation I found persons over the age of 49 were disqualified on the basis of age, this would seem discriminatory, against the Canadian charter of rights and freedoms? Based on the information at the beginning of this text it is quite apparent most people suffering from the most common neurological disease would be disqualified based on age.
I have written several letters going so far as to seek legal counsel yet the information I received demonstrated the legal costs alone to pursue this would be prohibitive that is unless I could find a legal firm willing to accept this on a pro bono basis or possibly the MS Society.
I will be posting this on my blog and sending a copy to our local MS chapter in the hopes that this can be added as something to investigate, please do not hesitate to contact me at your convenience. I believe this to be of great importance for myself and the vast majority of us with multiple sclerosis.
Thursday, November 26, 2009
It is not difficult to understand why some neurologists would be hesitant to accept this as a valid investigational procedure, a few have, yet the proposed hypothesis contradicts the majority of studies conducted to date. It has the potential of bringing a radical change in identifying MS as solely auto immune. It has the potential of putting into question the disease modifying therapies widely accepted today as the current preferred treatment option.
Personally I've always remained somewhat of a skeptic when most patients are given the option to choose between the four or five disease modifying therapies available today. Most are told to select the one which best meets their lifestyle i.e. daily injections, once a week, every three days etc. etc. when was the last time you suffered from a condition where the doctor allowed you to pick a rather choose from a variety of medications? Quite frankly I believe it is done because all of the medications provide virtually the same results what are the odds? I believe it is for that reason and that reason only patients are allowed to choose.
Research was recently announced at a few MS centers in the US, while the Canadian centers remained to be identified I would suspect Montréal, Ottawa and possibly Toronto may be included as investigational sites. I remain optimistic our Canadian centers will follow the same protocol as those established in the USA, patients with primary progressive as well as secondary progressive MS are included within the study group. Candidates will be selected by the end of January 2010. You can be certain I will be in line no matter what.
Multiple Sclerosis Society of Canada - National News Releases - MS Society of Canada announces request for research operating grants related to CCSVI and MS
On a totally different subject yet one I am certain is greatly impacted because I have MS is diabetes. I am a type II diabetic and have been for many years diet and mobility have always kept medications at bay. Some of the easiest ways to control diabetes are by exercising, "I'm wheelchair-bound." Another method of control is weight, again I'm wheelchair-bound and to top it off take medications which as a side effect contribute to weight gain. Give me a break! Yes I have my coffee in the morning and I take it with Splenda and a bit of cream yes cream. Breakfast normally consists of one bottle of glucerna, midday all have a bottle of water for lunch a lean cuisine. A normal dinner and that's it for the most part.
My M.D. felt that diet wasn't sufficient and now I'm on some type of prescribed medication which as a side effect gives me a stomach ache. I remain optimistic that this unwanted side effect will dissipate after a week or so. Hopefully it will help, time will tell.
Funny however with all the medications out there to treat this disease I certainly wasn't given the option of picking the medication I'd like based on my lifestyle. Sorry I just had to put that in to drive home my point about the disease modifying therapies available for MS.
Have a great day
Sunday, November 22, 2009
Several cities in the United States have started their preliminary investigations regarding this procedure. What is most interesting, the candidates they are searching for are those of us who have either secondary progressive MS or primary progressive MS!
As far as I remember this is the first time since the promise study that people with primary progressive have been included in a study.
An infornmative video on CCSVI (Chronic Cerebral Spinal Venous Insufficiency) may be viewed at the below URL. Note: The video is one hour.
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Friday, November 20, 2009
Tomorrow Saturday, November 21 W5 will have a segment regarding new developments in the area of MS, some have gone as far to say it will be a cure. While it certainly would be nice we're still looking at years before this type of treatment could be made available to everyone yet it's certainly encouraging to note that research has broadened the scope beyond those disease modifying drugs available today.
Here are a few links regarding the find.
Let's keep our fingers crossed!
Have a great day
Monday, November 9, 2009
Walk a mile in my shoes!
One of my first symptom was foot drop you take a step and for some reason the tip of your foot does not lift high enough to clear obstacles it catches on everything. In the beginning it was just simply an annoyance not much of anything else I felt like a klutz.
This was at a time when I had no idea what MS was other than they sold carnations once a year, that was the extent of my knowledge so naturally I blamed my shoes went out and purchased a pair of Rockports, of course the symptom remained and in my ignorance I purchased a second pair just in case, denial?
I found that I was wearing out the tip of my shoe much faster than normal if you looked at the sole you could tell exactly where my foot was dragging. You must remember this was at the very beginning I had absolutely no idea what an AFO was hadn't even visited my family physician at this point. Seeking the advice of a local cobbler he glued a thick piece of leather wear my shoe was worn, in order to bring the sole up to its normal state the leather must have been 1/2 to 3/4 of an inch thick, great yet it lasted for less than a week. I decided to try using 24-hour epoxy, turning the shoes upside down making certain they were level I would fix a piece of masking tape along the edge of the shoe making certain that the tape extended well beyond the normal height of the sole. After carefully mixing the epoxy it would be poured onto the sole where the wear had occurred, with the shoe level and upside down of course with masking tape holding everything in place it was fairly easy to add the amount required in order to fill the gap, 24 hours later I'd remove the tape cut or file the excess and voila a repair which allowed the tip of my shoe to slide on whatever surface it encountered thereby solving my immediate problem. Every two or three months this procedure needed repeating as the glue would eventually crack and fall a more permanent solution was required.
In her last few years my mom suffering from dementia lived at a residence in Erin Mills, Mississauga. There I met a woman whose hobby before MS was curling, she spoke of some type of material the curling shoe manufacturer glued to the bottom sole of one shoe which was meant to slide on the ice. This was fixed to one shoe only as the other one was meant to grip the ice surface.
At first I must say the manufacturer was hesitant as they normally receive shoes from clients apply the material to the bottom of the right shoe and return it to the client, after all left their business. It wasn't surprising they did not sell the material on a retail basis especially for my intended use however after explaining my situation to the manager he agreed sell me a small piece approximately 8 x 10 permitting me to experiment with this new material.It's quite difficult to cut yet easy to install once it is, there is a side with brown lettering where the contact cement is applied and also applied to the bottom of the shoe, when both pieces are dry day bond immediately upon touch. After careful consideration and inspection of the wear my foot drop was causing to my brand-new Rock Ports I decided to cover half of the sole.
Our two-story home in Georgetown Ontario had 16 carpeted steps between the first and second floor, I was on the second when I tried my shoe on for the first time quite honestly I don't remember my trip down the stairs as it occurred with lightning speed luckily I did not cause injury but I certainly learned my lesson.
This necessitated a trip back to the drawing board and the picture you see of my shoe at the top of this post was the end result. Covering a small portion corresponding to the wear sufficed anything more was overkill, pun intended. This material glides plain and simple and best of all one application outlasted the life of the shoe.As with everything else this worked for some time yet eventually I had to utilize a cane for support as well as that material on the tip of my right shoe, on one of our trips to Mexico we met a gentleman who also had MS he showed me this thing he was wearing called an AFO "articulated foot orthotic" it seemed fantastic, on my next visit to the neurologist I casually mentioned the device as he nonchalantly glanced at me and asked "would you like one?"
Now here was a neurologist who saw me struggling to his office every few months having difficulty etc. etc. etc. you would think he would of thought of offering an assistive device which would have helped me but no I had to travel to Mexico in order to meet a gentleman from Florida to learn about this device. Soon after a cast of my foot was made I will always remember that first step with the articulated foot orthotic, it felt as if I was walking on air absolutely fabulous. I would venture to say it added several years to my ability to walk.
This experience allowed me to make another conclusion, the more letters following the doctor's name the less they are in touch with reality. There I feel better now.
Have a great day I know I will
Monday, November 2, 2009
This week I must order a lift, I've placed my electric bath lift for sale and will order a lift in case it happens again which inevitably it will to think it wouldn't would not be realistic. Hopefully with the lift we will not have to rely on the ambulance service.
The cut on my head is healing nicely however it will be quite some time i.e. several weeks to a month before I get my haircut I'm just paranoid about touching that area right now rather I've adopted that new style of hairdo you know the one something similar to the Michael Booble/Donald Trump look.
On a more positive note I've been selected as the spokesperson for our MS walk this year. It will be interesting I hope they're ready for me, the message is quite different when it comes from someone with progressive MS. There is no relapsing remitting here it's progressive where remissions only happen during sleep and the occasional dream where you can actually see or feel the simple act of walking.
Have a great day.
Actually come to think of it every morning when I awake I make a conscious decision that today will be a good day, once the decision is made it's amazing how powerful that seemingly trivial decision can be.