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