Tuesday, May 25, 2010

Respite care

Tuesday, May 25, 2010
This morning I have started making a list of things I will require next week, not even certain if they have such a thing as an Internet connection certainly no WiFi yet perhaps some way for me to access my mail. Normally I wouldn't worry about it since the majority of hotels today provide Internet access one way or another except in this case for the first time I will be going to a respite care facility.

Certainly didn't plan things this way, my idea of respite care is for individuals in their late to mid 80s not when you're 53 however life has taught me that one's age has little to do with the necessity to rely on others for so many things we take for granted. On one hand I'm looking forward to the experience after all I am going of my own free will. My spouse will be a visiting our new grandchild, my oldest daughter and son-in-law for one week. In an ideal world I would certainly accompany her yet who lives in an ideal world?
For me to stay at home alone for an entire week would prove virtually impossible, I believe they refer to it as someone unable to accomplish the activities of daily living. Now doesn't that make you feel just all warm and fuzzy inside.

To stay at home would've required daily visits from nursing attendants to get up and out of bed in the morning, get dressed or take a shower then get dressed only to return early evening to put me to bed. Add to thIs the reality that most days would be spent alone not that there not now yet in the evenings after work I get to spend some time with my spouse. Besides it is without doubt this will provide her with the opportunity to enjoy her trip not having to worry about me every single day, a break from having to deal with this MS crap she never signed up for.

I've never been and I'm not certain what to expect I certainly hope Miss Ratchet has found another employer! So I'm making a list before I go however what do you bring? My only link to the outside world is the Internet the various sites I visit and the news which comes out on the net before the ink has time to dry on the printed versions.

If I have access I will definitely update my blog to share my experience and if not it will be a condensed version of what went on during my week away.

Tuesday, May 18, 2010

How much of your donation goes to administration?

Recently read an interesting article which was a result of my curiosity in finding just how much of our contributions went to research. While this varies from one organization to another I was disappointed to read that our society came in second for having the highest percentage of funds allocated to administration. See the following link for a list of many charitable organizations, it will definitely make you think twice before handing out more funds.

Local chapters usually provide a number of services for people affected with MS and these vary greatly depending on the number of people who sign up for these activities. Interesting to note, ever since I've been involved the group never seems to change, there are hundreds of people affected with MS within our jurisdiction yet only a handful actively participate.
I'm not saying these get-togethers and activities are not important they definitely are I for one participate on those I can. Next year I think I'll give them a few hundred bucks from my pocket for the activities I participate in and as for the rest well I'll be concentrating on raising funds for my needs whether that means treatments which are not currently covered under our current health plan or for any other personal needs I may have. Selfish perhaps yet the funds would translate into immediate results with an immediate impact on my life, my situation and my disabilities.
You know I really wasn't interested in any of this until the president of the College of physicians in our province of Québec decided that privately owned x-ray clinics could no longer perform Doppler's on patients with multiple sclerosis. Anyone else could go but not those with MS well that ignited a fire which I hope will spread throughout the community, unfortunately most of the impact will be felt by our MS Society.

Monday, May 17, 2010

Monday, May 17, 2010

It appears my comments regarding the doctors television interview were shared by many. As I understand it he has resigned as the President of the College of Medicine of Québec. Wish I could share the video yet I'm not certain if it would violate copyright laws. Also it's in French but is still pretty interesting to watch someone so highly educated stick his foot in his mouth not once but twice during the same interview. Gotta love it

It will be interesting to witness the developments in the next few months.

Thursday, May 13, 2010

Where does our money go?

Have you ever wondered just how much of your donation to MS charities were actually channelled towards research? It's always been my belief the majority of funds raised were utilized for this purpose. I'm not certain why, must have accepted our society's explanation on faith alone yet this year probably influenced by my involvement as spokesperson it fuelled a desire to dig a bit deeper, what I found was disappointing to say the least.

Ever since being diagnosed in 1994 my spouse and I have solicited our families and friends to raise funds for our MS walk, then there is our yearly Carnation drive etc. etc.. All of this in the hopes that someday the money being poured into research would result in a payoff a benefit for everyone with MS. Perhaps being naïve as to how these funds were allocated it provided me with false expectations. We were, in my opinion led to believe that most of what we raised was directed towards research. In fact very little is allocated for this purpose, reading the financials reminded me of large government agencies where work is basically self generated as a result of internal policies and procedures, the likes comparable to a perpetual motion machine operating on its own negating the need for any fuel or external input of any type.

Looking over the financials for the year ending August 31, 2009 I found the Canadian MS Society took in $33,677,000 most came from donations and various fund raising events. Of this amount a grand total of $7,324,000 was spent on research, that ladies and gentlemen translates to $.22 out of every dollar raised for research. Not exactly what I expected, as a matter of fact it is in my opinion a farce a joke and if you have the disease a slap in the face.
After seeing this I thought for certain there must be some mistake, certainly I must have misinterpreted the data so I decided to take a look at our own province yet unfortunately the findings supported the national financials. How on earth we will be able to find a cure given this type of funding? Short of a miracle we are quite simply out of luck.
If you would like to see the financials all one has to do is Google "MS Canada financials."

Funding research is probably something relatively new for the MS Society, other than handing out a few dollars here and there most if not all of the research conducted in the past were funded by pharmaceutical companies. Recently due to the immense pressure received by the public regarding CCSVI research the MS Society announced funding for several centers to be announced sometime in June for research regarding CCSVI. The maximum grant for each successful application "clinic" is $200,000 over two years, that's hardly enough to pay for a neurologist never mind mounting a study of any kind. Who are they trying to kid with this type of funding could it be perhaps just a way of dealing with the immense pressure after all we wouldn't be able to say they're doing nothing.

It doesn't take a brain surgeon to determine this research will be going nowhere, how can it given this type of funding?
It is also fairly evident that anyone with progressive MS who can no longer walk or those of us who have lost fine dexterity will not be considered for this study. We simply wouldn't meet the standards required by the current protocols in place for evaluating patients during trials.

I'm afraid anyone looking for results may need to take matters into their own hands, yet even that is proving to be difficult as the president of the physician Council in Québec Dr. Yves Lamontange and his colleagues managed to close the only opportunity for people to receive privately funded examinations at the only clinic in Eastern Canada capable of providing these specific Doppler's.
His response when interviewed on television is that they have not stopped the clinic from performing these examinations, as far as the doctor is concerned it was a recommendation only and the clinic must have seen the light by stopping this procedure for people with MS.

Remember these are tests which are not funded by the provincial health-care system and require patients to pay for the procedure out of their own pockets, we can no longer do that?

The sign at the Westmount clinic reads as follows

Please note that we are no longer booking the Jugular Vein Doppler for Venous Insufficiency. We have been advised by the college des medecins to hold off on them until they officially rule on the practice of this exam. We regret the inconvenience this may cause however we have agreed to comply with this request and will not offer this service until further notice.

This is the link to the clinic

I can go get a facelift a tummy tuck even a Doppler providing I do not have MS, if that's not outright discrimination I have no idea what is. Virtually down the clinic in Montréal "the only one in Eastern Canada" which provided examinations to determine the existence of venous insufficiency. The cost for this examination is not paid for by our provincial health-care, fees were paid for from the pockets of patients wanting to know if they suffered from this condition. The interview by Dennis Levesque with Dr. Lamontange went further, at one point when pressured by the interviewer the doctor responded, all they have to do is schedule a Doppler and not tell them they have MS.
I guess this proves that education and intelligence do not necessarily go hand-in-hand.

If I want to have any type of cosmetic surgery done I need no one's approval as long as my finances allow it can be done. If I need to visit a private clinic in order to obtain an MRI or x-ray even to have blood drawn for testing all that is required is the almighty buck. However if I am a patient that suffers from MS I am not permitted "at least in the province of Québec" to pay for the required examination.

The end result is that patients are going elsewhere for the required examinations, there's a clinic in Vancouver and I believe one in Toronto. There is even a doctor in Ontario who has not only performed the Doppler yet has performed the corrective procedure pro bono on half a dozen patients. Others who cannot obtain these tests locally are willing to travel to other countries spending thousands of dollars to have this done.

Personally since I suffer from MS I would certainly like to know if I have this condition that is a given. Anyone who could afford it would probably want the same, so I may be heading to another province, a trip on the West Coast would be nice. As for the procedure the clinic in Poland is booked solid for 2010 and part of 2011 yet I'm on the list hoping that something will develop in Canada before I must make a decision.

Finally, I tried to find a link to the television interview with the doctor yet for some reason it appears to have disappeared from the archives. I wonder why?

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