This is an e-mail I received from the chief executive officer of the Canadian multiple sclerosis Society. While their efforts are to be commended I could not help but write to him regarding the Canadian Grant program for disabled individuals. I've mentioned this to numerous people yet no one seems to care and quite honestly I don't get it. The government will give you thousands of dollars towards your retirement yet discriminate if you are older than 49. You can read my letter which follows.
Have a great day and weekend
Michael
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.
Regards
Michael Halashyn
Friday, November 27, 2009
Thursday, November 26, 2009
Thursday, November 26, 2009
After what appeared to me as a lackadaisical attitude towards a recent study by Dr. Paolo Zamboni, University of Ferrara, Italy the Canadian multiple sclerosis Society appears to have had a change of heart announcing requests for research, operating grants related to investigating his hypothesis. Judging from the amount of media exposure over the past several weeks I suspect they succumbed to the immense public pressure.
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
Michael
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
Michael
Sunday, November 22, 2009
Sunday, November 22, 2009
In case any of you have missed the program aired on W5 yesterday here is the link.
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.
http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20091120/W5_liberation_091121/20091121?s_name=W5
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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.
http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20091120/W5_liberation_091121/20091121?s_name=W5
===========================================
Searching the archives is available at:
http://community.lsoft.com/archives/AUTO-IMMUNE.html
===========================================
To change your E-Mail address follow the steps below:
1. Remove yourself from the list using old E-Mail address 2. Subscribe to the list with new E-mail address Instruction are provide below.
============================================
If you ever want to remove yourself from this mailing list, send mail to:
LISTSERV@COMMUNITY.LSOFT.COM
with the following command in the body of your email message:
"SIGNOFF AUTO-IMMUNE"
without the quotes
No text is required in the Subject area.
===========================================
To subscribe to the auto-immune list send an E-mail to
LISTSERV@COMMUNITY.LSOFT.COM
In the body of the E-mail type
SUBscribe auto-immune "your name"
Without the quotes.
No text is required in the Subject area.
***********************************************
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LISTSERV(R) list management software. For more information, go to:
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