Recently, a number of people took part in a Blitz. Those who have already had the treatment sent a letter with a list of the improvements they have experienced. Those who are still untreated, sent a list of their symptoms. I am in the latter group. Here is my list in letter form. The subject line said,
What to Look forward to should it happen to you or one of yours
August 11, 2011
MY SYMPTOMS (by Karen Copeland )
My name is Karen Copeland. I am a Canadian citizen diagnosed with Multiple Sclerosis. Below is a list of my symptoms and a brief comment on how they affect my daily life.
- Fatigue - constant and extreme. Often need a nap after walking from living room to kitchen.
- Stamina – non-existant. I used to walk 7km to and again from work and was never exhausted. Six(6) feet has put me out for hours at a time on good days and for several days on bad days.
- Legs burn, feet swell constantly. Makes walking difficult, sleeping difficult, just being alive from minute to minute very unpleasant and painful.
- Bladder does not work anymore making self catheterizing several times a day, mandatory and the incidents of bladder infection much more frequent.
- Bowels – Messy, unpleasant and embarrassing.
- Right arm and leg only function at about 50%. Cannot raise my right arm over waist high for more than a few seconds; right leg drags when walking and cannot do stairs at all anymore. Both feel numb. Fingers cannot feel to hold things or do things like buttons and zippers.
- Upper torso – as the day progresses, so does the feeling of weight - it is like wearing a lead shirt.
- Walking –short in house with aid of walker. Staying upright for more than 10 minutes, ends in my body folding in two at the waist.
- Brain fog – it gets harder to bring words I know and want to say from brain to vocal chords. Extremely frustrating for an active mind.
- Concentration – a thing of the past. Also very frustrating!
- My independence has been taken away. If I fall, I stay down until help comes. If my house needs tidying, someone else has to do it. A letter like this which should take me 20 minutes, takes all day or even several days depending on the fatigue.
- Have driven from coast to coast many times. Had a clean drivers license all that time. Have been unable to trust myself to drive for more than 10 years, so I don’t. Brain fog does not mean loss of intelligence as many appear to think.
My symptoms are getting worse. An extrovert all my life; now an unwilling introvert. I have seen angioplasty has many of my friends walking and some are even working again! I could go back to being responsible for myself as I was. I paid a lot of income tax in my time, partly so that this type of hang up would not happen.
I, like all Canadians, deserve the opportunity to have not only their arteries, but also their veins unobstructed, and their blood flowing freely.
Please support Senate Bill S-204.
CC: Every Canadian MP
Every Canadian Senator
Wonder of wonders, I got a response from the P.M.'s Office.
Dear Ms. Copeland:
Thank you for writing to the Prime Minister. In your e-mail, you raised an issue that falls within the portfolio of the Honourable Leona Aglukkaq, Minister of Health.
Please be assured that your comments have been carefully noted. I have taken the liberty of forwarding your e-mail to Minister Aglukkaq. I am certain that the Minister will wish to give your views every consideration.
For more information on the Government's initiatives, you may wish to visit the Prime Minister's Web site, at www.pm.gc.ca.
Once again, thank you for taking the time to write.
Executive Correspondence Services
for the Prime Minister's Office
Services de la correspondance
de la haute direction
pour le Cabinet du Premier ministre
A letter like this looks like Buck Passing 101 material. It has to be answered. If you get a similar letter, please respond. Saying nothing is usually interpreted as acquiescence. Please do not allow this to be interpretted that way! Here is my response sent out today.
Dear Prime Minister and M.F.Bustos,
I sent the letter to the Prime Minister because the Honourable Leona Aglukkaq has been less than honourable in her dealings with patients of MS. In fact, it is difficult to find any health issue in Canada that she has addressed with any aplomb at all. Her interviews on the subject of MS/CCSVI on television have been a series of stuttered avoidances of any issue put to her. She parrots her 'experts'! If she did her homework, she would see fairly quickly, that her "experts" are in fact, experts at nothing. Dr. Freedman, one of her experts, does not even know the correct definition of 'Multiple Sclerosis'. He refers to it on a youtube video as having to do with the number of 'episodes' a patient has which is not what MS means at all. Not only does she parrot them and their errors, she clearly is uncomfortable doing it as she stammers and repeats pre-written info even when it does not address the question put to her. If anyone seriously wanted to learn about the people in her riding, they would go to the people in her riding. They would not ask fishermen from Newfoundland for instance. Yet she has not spoken to any MSer that I can find. She has gone to fishermen - for that's what MS neurologists are - fisherman. They have been fishing around a hypothesis that has not produced one sensible catch for over 50 years.
Perhaps the Honourable Leona Aglukkaq thinks we are all so badly affected by our condition that we have nothing intelligent to say? That would be another mistake on her part! Let me correct you and her on that point. There are a good many intelligent, even brilliant, people suffering from MS. And we are not impressed with her, her adopted views on MS nor the agency from whom she has adopted her views.
It has been suggested to the Prime Minister, indeed to every Member of Parliament regardless of political stripe, that the neuros so fervently clung to by the Minister of Health, are not in their particular line of medicine to help anyone. It does not take a university degree to see that. It just takes a modicum of observation.They are in it for the money and are the gophers of the Pharmaceutical industry. Any area of medicine that prescribes drugs of questionable value at prices of $1,300.00 to $4,000.00 per month per patient needs to be investigated. I do believe that we have here in Canada, a very good unit at the R.C.M.P. who investigate fraud, conflict of interest and other white collar crimes.This issue begs their attention.
The treatment we are going out of country to get is not new in Canadian Medicine. It has been around for decades and is done daily in Canadian hospitals for all who need it except people diagnosed as having Multiple Sclerosis. This is discrimination based on medical disability. Not a Canadian attitude of the past. Please do not continue to keep that disgraceful attitude alive. A quick look at history will tell you quickly, that this attitude inevitably comes back and bites and it usually bites hard.
Do not make us beg for fair and useful treatment. Making people beg is beneath contempt.
Here are two links on the subjects herein.
If you have been diagnosed with MS and feel that CCSVI is a part of it or all of it, and if you didn't join the Blitz, it is not too late. Send your symptoms or your improvements if you have been treated for CCSVI to the PM, and the MPs and MPPs. If you already have and have received a letter back like the one sent to me, respond to it. Do not leave them thinking you are ok with their buck passing and poor handling of our problems getting proper medical help. Speak up and speak up as loudly as you can.