Letters to and from the Prime Minister's Office

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.

1. Fatigue - constant and extreme. Often need a nap after walking from living room to kitchen.
2. 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.
3. Legs burn, feet swell constantly. Makes walking difficult, sleeping difficult, just being alive from minute to minute very unpleasant and painful.
4. Bladder does not work anymore making self catheterizing several times a day, mandatory and the incidents of bladder infection much more frequent.
5. Bowels – Messy, unpleasant and embarrassing.
6. 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.
7. Upper torso – as the day progresses, so does the feeling of weight  - it is like wearing a lead shirt.
8. 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.
9. 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.
10. Concentration – a thing of the past. Also very frustrating!
11. 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.
12. 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. 

Sincerely

Karen Copeland

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.

M.F. Bustos
Manager/Gestionnaire
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.

http://www.youtube.com/watch?v=NhKci3UzSGE

http://www.theamericanscholar.org/flacking-for-big-pharma/?key=50601046

Sincerely

Karen Copeland

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.

January 21, 2011

Eleanor Barker has given me permission to put this letter up. If you have not read it, maybe you should. Be sure to check out the financial accounting at the end. It will boggle your mind!


Letter Urging the Ontario Government to Fund Clinical Trials for CCSVI Treatment - time is of the Essence! Everyone must write their story to their MPP in Ontario! by Eleanor Barker


Dear Dr. Eric Hoskins,

 I ask the Government of Ontario to respond to this urgent plea for TIMELY ACTION to move Ontario MS patients closer to relief of MS symptoms through treatment of CCSVI. The IMPORTANT next step is for the Ontario Government to fund clinical trials of the angioplasty procedure for CCSVI in Ontario NOW.



My name is Eleanor Barker, I am 57 years old. I live in St. Paul’s riding. My brother (of Burlington, Ontario), my uncle, my aunt and 2 remote cousins have had MS. I have never known life without MS.



As a child, I visited my aunt Florence who was institutionalized with all of her significant nerves and tendons “cut” to “ease” her situation as an extremely disabled person. Her husband, deputy minister of health for Saskatchewan Mel Derrick, was a capable man who was unable to look after his wife with MS and daughter, while carrying on a senior government job.    In the end, my aunt Florence died when I was in university – and her family suffered extreme emotional duress, that has not ended even today. 



When I was a teenager, my uncle was also diagnosed with MS. He fell in the bathroom the night of his oldest daughter’s wedding, due to balance problems and wedding celebration, and hit his head and died. So a wedding was immediately followed by a funeral.



My father loved his brothers and sisters, and the occurrence of MS in two of his close ones was a heart break and deep concern throughout his life.  Even though he had five children of his own, he made every effort to support the children of his brother and sister – until the day he died. As children, MS was in our lives, although we did not fully understand what it meant. As teenagers, we started to ask questions about MS and wondered if we would “get it” someday, even though “it” was in our cousins’ houses, not ours. My father told us not to worry– we would not get it.



When I was 36, I had the phone call that broke my heart. My brother Grant at age 30 had gone completely paralyzed on one side at work – and was sent to the Joseph Brant Hospital in Burlington.  With MRI results, Grant was immediately diagnosed with MS.



How do I summarize the past 21 years of hoping for (and donating for) a meaningful advance in MS research, while watching my brother deteriorate physically and also mentally? How do I describe to you watching the hopes and happiness of a lovely young couple and two toddlers grind through life with chronic losses, no holidays, no family outings, no fatherly guidance and mentoring, a mother struggling with 2 teenagers essentially on her own, working full time, while taking on more household tasks, accepting home care workers into the house, husband on full disability at age 40, watching income drop and worrying about educating 2 children, decisions on capital spending on house adaptation, transportation, physical aids, hospital beds, mattress pumps for minimizing bed sores, computer aids for quadriplegia and then finally witnessing mental deterioration into dementia at 50? Few of the people who make decisions about MS carry this relentless emotional, financial, physical and family burden.



My brother has a BSc. (Chemical Engineering) from Queens and a MSc. (Chemical Engineering) from Waterloo. He worked for Imperial Oil Limited in Sarnia and Degussa in Burlington. He had hopes and dreams of going to work in Germany with Degussa. MS finished these dreams, but he was so good at his work, that he was promoted right up to the time he had to retire at age 40. When retired, he worked with Junior Achievement and taught Beginners Computing to seniors until his disability stopped this also, about 6 years ago. Grant would get setup in his wheelchair for the day by his care worker – and then would go out– even in winter, would drive himself, while he still had the use of a finger, through snow drifts to get to his teaching appointments. Many Burlington residents knew his route and would help him get his wheelchair through the rough patches.



With help from Chedoke, Grant has a great computer setup at home, which he runs with a sensor that picks up reflections from his glasses to allow him to mouse through programs and to type out messages letter by letter.  He was using the Dragon speaking software until three years ago when he essentially lost the voice strength required for Dragon. He now drives his wheelchair with his mouth.



Last year Grant was fading fast. He had constant bladder infections and was on bed rest with frightening bed sores most of the year. His mind was going – no memory, no interest in the news, no capability to comprehend his investments, no ability to converse, many periods of blank staring.



In November 2009, the CTV show on Dr. Zamboni’s work was the first light in a lifetime of MS. Both my brother and I had scanned the research literature for years – and discarded all that we saw. Nothing made sense, and we had no predisposition to follow flaky cures available at high cost and higher risk. With Dr. Zamboni’s work, the fundamental science made sense. I believed that it was too late for Grant, but that it was of utmost importance to get the research launched quickly for all of the children in my extended family who have the same statistical chance of getting MS as Grant.



Through email contacts, I was quickly in touch with Dr. Mark Haacke. We started a fund at McMaster for MS research in the Imaging Centre. The first donation came in December 2009. That fund is now about $150,000 and research is being done regarding a correlation of amount of iron in the brain to the severity of MS disability, as measured by Susceptibility Weighted MRI techniques, developed by Dr. Haacke. In February 2010, I met a group of people who decided to raise research money for St. Joseph’s Hospital Hamilton to undertake a study to assess the correlation of the occurrence of venous blockages with MS. This group has raised about $390,000 for this work.



Suddenly in July 2010, Dr. Gary Siskin in Albany New York decided to try the angioplasty procedure in the Albany Medical Centre on some severely disabled MS patients. Grant met the criteria and my sister, brother-in-law and I drove Grant by wheel chair van to Albany for the outpatient procedure. One of the challenges was that we could not get a care worker to come with us, so we would have to operate all of the equipment and handle an extremely delicate quadriplegic in the hotel attached to the hospital for the day before the procedure and 2 days afterwards. When we arrived, Grant had little mental capacity and could not tell us what to do. So we flailed around, making mistakes and named ourselves “The Three Stooges Care Company”.  Somehow we got him to the procedure the next morning and we had an excellent meeting with Dr. Siskin, who cautioned against too much hope. Grant handled the procedure well and all was completed in an hour. Dr. Siskin indicated that Grant had had very tight valves at the bottom of his jugular veins and that he had loosened them, but he wasn’t sure that the situation was conclusive. We were disappointed – and in fact we had hoped for stents, so we could be sure that his veins were open and flowing well. But immediately after the procedure, Grant’s hands were warm, his coloring was better, and his bladder was working well. Grant had the usual headache in the first 24 hours after the procedure. Luckily, after the procedure, Grant’s brain fog lifted quickly and he was able to give us very good instruction about his care until we got him home safely. (On the drive home, I couldn’t help but wonder why Grant could not get such a simple outpatient procedure in Hamilton or Toronto!).



The highlights of the last 6 months for Grant are:

    * His charming and witty personality is totally restored
    * He has had one bladder infection (recent) versus constant infections before the procedure
    * The integrity of Grant’s skin is better; bed sores have not “grounded” him since the procedure
    * He is reading the newspaper online
    * He is running his computer and listening to music of his choice
    * He called my sister using his speed dial button on the bar by his face –first time in 3 years
    * He has no fatigue – on Christmas day he was wide awake from 6 am to midnight!
    * He makes many smart remarks about his 3 sisters – and this gives all of us great joy!
    * Grant has the care worker to put his computer mouse under his right hand – and he occasionally is able to push his index finger and get a click on his computer screen
    * Grant’s voice is back enough that he wants the Dragon speaking software on his computer.



Grant has always considered himself a lucky guy – he would call me in his early disability retirement and tell me so. He knew he was lucky because he had a decent disability policy at Degussa, and many of his MS friends had nothing like that. We know that he was a very lucky guy to get a chance at the angioplasty with Dr. Siskin. And strangely, his slightly inconclusive “valve” job has done the trick so far – and we have our brother back.  I have read two notices of deaths of MS patients in the past 2 weeks – and from the description of their situation, neither was as disabled as Grant. Both were awaiting the angioplasty procedure and their number did not come up in time.



I will continue to work for as long as required with the group of the most knowledgeable Canadians I can find, so that all Canadian MS patients and families have a chance at the absolute joy, symptom relief, and rescue from psychological terror and debilitating physical disability of the MS disease provided by the angioplasty procedure and CCSVI theory. I hope that the Ontario Government is working on the same thing – with a sense of urgency!



Best regards,



Eleanor Barker

Approximate costs of Grant’s MS:

20 years of lost wages and productivity ($100,000 X 20)                    $2,000,000

5 years of useless drugs ($25000 X 5)                                              $   125,000

House adaptation                                                                            $     50,000

Wheelchair Van                                                                              $     60,000

Other Equipment (wheelchairs, hospital bed etc. etc.)                        $     80,000

Care workers 3 hours per day 365 days 20 years ($20/hr)                   $  438,000

Total Estimated MS Costs                                                                $2,753,000

Cost of Grant’s Angioplasty                                                             $    16,000

 

My Answer to Leona

 January 20, 2011

My Response to Leona's Letter

Dear Ms. Aglukkaq

In your letter to me this morning, you said, "I recognize the toll MS takes and the significant challenges faced by patients, their families and friends."

I do not think you do. In fact I know you do not. How can you possibly know what it does to me to be unable to walk the short distance down the hall to the mailbox without looking like I am drunk - falling down drunk? I do not drink but I will wager a good many of my fellow tenants think I drink to excess.

How can you know that this short walk for my mail will leave me so physically exhausted that I will need to lie down for an hour or so to get my energy back. How can you possibly know how I feel - I who used to walk work from Parkdale in Calgary to the east side of downtown - about 7km - just because I like walking.

How can you possibly know that it takes a frustrating half hour to do up three buttons on my blouse or a similar amount of time to do up the laces on my sneakers? I will wager you do those things without ever giving me or my fellow MSers a single thought.

How can you even begin to fathom what it feels like to have been a very independent woman all my life who fixed her own appliances, put up her own shelves and like that and now be unable to even hold a screw driver, let alone use it.

Can you even think of having to catheterize yourself every time you need to pee? Or of dealing with the inevitable bladder infections one gets from having to do that three or four times a day? Do you even know how to catheterize yourself?

How can you imagine how it feels to be a relatively well educated person with an IQ that last tested at 127 and now be unable to read a short article without the eyes giving out or the concentration giving out??

Can you imagine never eating out because the chances of choking are higher than not? Would you want me sitting next to you at a fancy dress dinner and choking on my lobster and possibly spitting it all over you?

Can you imagine having me sit beside you at this same dinner wearing slippers because my feet are so swollen I cannot get my shoes on?

Can you imagine going around day after day with the sound of high tension wires humming in your head without stop?

I can't even imagine you shaking my hand because my right hand is constantly icy cold and would make you cringe.

Can you imagine wanting to stand up and go get yourself a glass of water and find that you are paralyzed and cannot move.Now imagine wanting to call for help and it taking you 2 hours to get to the phone that is only 2 feet away.

I have no work life left - who wants to hire someone who cannot stay the course for even a half hour?

I have no social life left. I cannot even get my groceries without the help of kind fellow shoppers reaching things off three feet high shelves.

I have no sex life left and I am not going to spell that one out for you. You cannot be that stupid.

I have no family life worth talking about - I dare not lift up one of my nieces' or nephews' children for fear of holding them too tight or too loosely and dropping them.

Do you know what the kicker is? I am a lot better off than a lot of MSers.

Do yourself a favour and stop telling people you know. You do not know! God willing, you will never know in the same way I do and countless other Canadians do.

You could do yourself and us a favour by stopping this stonewalling you are doing with the vascular angioplasty treatment. You could leave office a real Canadian heroine by reversing  your  stand on this.

You also say, "We hope to have preliminary results for these studies in a matter of months." What exactly does that mean? I tell people I am 25 years old and a few months. It's a joke because I am 65 years old. But as you can see, "a matter of months" could be never or it could be by May 2011 or it could be 40 years. Stop talking like a politician and start talking like a real live human being. Your credibility ratings will soar!

Very Sincerely

Karen Copeland

How long have you had MS?

October 14, 2010

Do you remember when you first found out you had MS? Do you know how long you have had it? It is unlikely you really know. Most doctors treat the symptoms long before they even think of MS. After all, if you have a problem with your eyes, for example, they treat your eyes. If the symptoms go away on their own, chances are you will both forget it. You may go through that process several times before anyone starts to wonder about the problem being bigger than the symptom. Here is how it played out for me.

Doctors had been talking about maybe it was MS for a few years but no one actually made a diagnosis or at least never told me they had. I was unable to work at anything - the market was depressed and my age worked against me. I'm an accountant and a paralegal and without any feeling in my right hand, holding a pen for more than a couple of minutes, or typing is pretty impossible especially when there were time requirements. So I have been on O.D.S.P. since my savings ran out a few years ago.


But for the years between a cancer operation in 1990 and O.D.S.P. my savings and the odd job kept me going. And my sister in South Africa put a roof over my head for about three years. It was while I was at her place that I knew I had MS.


I loved to walk and I loved walking around Polokwane checking out the flowering trees and the beautiful birds and the odd wild animal. Christmas is a real fun time for a Canadian to be in South Africa. It is hot with temperatures going up into the mid thirties Celsius and it is very dry. I would go to the mall and have the grandest chuckle at the cotton wool snow and those poor native's dressed as Santa complete with padding to make them seem fat and jolly. Everyone would sing "Jingle Bells" and I always wondered if they had any idea what a 'one horsed open sleigh' was. There certainly were none anywhere to be found in South Africa or anywhere else in Africa for that matter.


I was headed home from one of these jaunts when my left foot broke the rhythm by flying off to my left and at a weird angle, nearing sending me flying. In initially I told myself I must have stepped on something but it did it again with my next step and the one after that and the one after that. But I knew I had seen that gait before. A gal I used to know who had MS started out like that. Hers got quickly much worse and she eventually could not control her limbs or her speech at all. My little episode went away after a couple of days but I knew. A few months later I was back in Canada.


I mentioned my fears to the doctors here and they just fluffed it off and gave me anti-depressants. They also got really ticked off at me for ‘self diagnosing’. I do not understand their anger. I have lived in this body for 65 years and am very tuned in to it’s little foibles; they looked at a few isolated portions of it for less than 20 minutes and claimed to know more about it than I did. And they did that for the next 6 years.


During those 6 years I went from walking to walking with a cane and then to depending on a walker. I also went from being able to do short term jobs to not being able to anything in an office. If you never thought about it before, just think of how many of the usual office procedures depend on your hands and fingers being in working order.


My right hand had been pretty well useless at doing things above waist level since that breast cancer operation in 1990. Well I thought it was useless but it got more useless. Back then I couldn't move my arm above my waist but I could feel things. Now I was experiencing moments, sometimes days of being unable to feel anything. Glasses and mugs slipped out of my hand to the floor if my concentration wandered; buttons were impossible to do up. My writing went from pretty good to unreadable. My doctor's response - give me yet a stronger anti-depressant. So I moved from small town Ontario to small city Ontario. And I got a new doctor. My Dr. Yau is a gem, a diamond that would make Cecil Rhodes' discoveries fade in comparison. Sadly for me, she isn’t an MS specialist. She’s my G.P.


The first noticeable difference - she listened to me. Then she didn't fill me up with "head" pills. Then she sent me to a fabulous little place here in Ottawa - The Elizabeth Bruyere Day Hospital. There they taught me some excellent exercises to keep from atrophying totally. They showed me some household devices that would help make some things easier - a great little gadget to make getting out of the bath easier; a scooter to make trips to the grocery store and back possible etc. And sometime during the three months I was going there, my bladder up and quit. So they taught me how to catheterize myself.

I'm not sure but I think it was the bladder thing that really got the ball rolling. My next trip was out to see the MS people at the Civic Hospital. The doctor I saw there fired questions at me. Questions about fainting, tripping, numbness and etc etc etc. Lots of the areas he touched on were familiar – sort of. I had had little problems with most of the areas he mentioned but none had been bad enough and none lasted long enough to send me to a doctor. Well except two.

Question: "Have you ever suffered temporary blindness?"

Answer: No but I did have a strange thing happen back in 1988. I suddenly had black spots in the middle of whatever I looked at and that turned to double vision. I had at least a half a dozen tests but they could not find the cause. That lasted about three months and then just up and disappeared. It has never happened since so I just wrote it off as some sort of quirk." And

Question: Ever had any strange incidents that we haven’t mentioned yet?

Answer: Yes. Once my back just gave out on me without warning and for no apparent reason. I could not hold myself erect no matter how hard I tried. I went to a doctor who gave me lots of tests but never had an answer. He recommended physiotherapy. It didn’t make any difference so I took it upon myself and strapped my back. I.e. I taped it tightly so that I could walk upright.

Those two questions plus all the others plus the MRI results plus the failing bladder and finally I have a diagnosis.

And, CTV’s W-5 showed me The Liberation Treatment. A possible Cure? Treatment? Hope? And that possible cure/treatment/hope is called CCSVI (Chronic cerebro-spinal venous insufficiency)

And now here I am, finally with a diagnosis and running into more medically inspired smoke and mirror jobs. Like we need placebo trials for CCSVI. See Placebo Effect on the page entitled, What Are MS Dragons for a brief monologue about it. Please feel free to turn it into a dialogue by adding your 2 cents in the comment area. So, have you figured out how long you have really had MS??