Merry Christmas, updates, and a bit of a rant

Hello and Merry Christmas, Happy Hanukkah, Joyful Kwanzaa or Happy Festivus to you and yours. I don’t normally send out yearly update letters at this time of year, but this has been a big year for me and mine, so I thought I should bring you up to date with what’s happened in the lives of me and my family. I’m sorry if this is a bit long, but I’m sure many of you wonder about these details, and I don’t often get the time to write very much these days.

As far as I can recall, the year started off normally enough, yet with a glimmer of hope on the horizon for me and my fellow MSrs. Dr. Paolo Zamboni of Italy was brought into our world by Avis Favaro on CTV’s W5 in November of 2009. You can find out more about Dr. Zamboni and CCSVI on Wikipedia. Last month, I wrote a clever little piece sung to the tune of Simon & Garfunkel’s Mrs. Robinson as a thank you to Dr. Zamboni. It’s poorly performed, but I did what I could: http://www.youtube.com/watch?v=qSAvw4ORDOs As did many of my fellow MSrs, I contacted my family doctor and my neurologist asking for the procedure, and was shocked and dismayed to learn that the ‘procedure’ was not available in Canada, nor was it likely to be anytime soon. We were all incensed to learn that our country was one of a handful on the international scene to deny the right to health care based on the fact that we had MS. On 5 May (my birthday!) I was emcee for a rally held at Queen’s Park in Toronto. Other rallies were held at the same time across the country. Seven months later, we continue to fight this wrong.

I called Lankenau Hospital in Pennsylvania and was scheduled to have the procedure done on 25 May. Then the hospital’s legal staff shut down the doctor who was doing the procedure, while a patient lay waiting with the IV in her arm! I scrambled to get a new date elsewhere, and was able to secure 2 June 2010 in Latham/Albany New York with a Dr. Gary Siskin performing. Shortly before this was arranged, I was entertaining the idea of travelling with Edward to Egypt to have it done. Had it not seemed like a sort of ‘lottery’ to win the right to get there, we would have gone. And shortly after my date was set in Albany, I got a call from a medical tourism company who could send me to Costa Rica at a pretty good price, but Edward and Melissa had already made plans to drive up from Halifax so he could drive me to Albany. My dear friend Reba looked after Sadie while we were gone.

My wonderful son drove me to the border crossing where we were detained for about 90 minutes because our booth operator took too long in the bathroom. We didn’t want to reveal the reason for our planned trip, so we told them we wanted to see New York State’s capital city. Not good enough. They went through our vehicle, checked the GPS (and changed the language), spilled my coffee all over a bag, and made us feel really AWFUL, then confronted us with the papers that had been in my suitcase stating that I was heading down to have the angioplasty. It all ended alright, but we were really anxious to get going and land at the motel. The day of the procedure I made some videos right before and right afterwards. All are available at curmudgeonine on YouTube if you care to see any. The whole trip was wonderful, save for the incident at the border. Edward and I had some good times together and I am a truly fortunate woman to have such a son.

We came home the day after the procedure and surprised Mom and Teresa by arriving a day early, and by my easily walking up the stairs to the living room. Mom wept when she saw me and exclaimed that I’d grown. I guess I grew about 2 inches - I’d been hunched over for years, maintaining my balance so as to not fall. Edward and Melissa headed back to Halifax, and on 11 June, Mom moved into a retirement home not far from me. I went to Halifax on 12 June, for a wonderful 13 days of visiting and touring around, and even going up to Fredericton where I met cousins Otis, Bobby and Janette - all Allens - my maternal grandmother’s family. The angioplasty gave me a new lease on life - improved QUALITY of life. I am sure that had I not had the treatment, I would now be in a wheelchair. As it was, I required a walker to get around even in my bungalow, and getting the recycling together was something that was almost impossible each week, and I had to have a long rest every time I had to do that. Groceries were attained by using my scooter, and winters were SO difficult for mobility.

I returned to my home on Johnson St. on 26 June. On 29 June, Edward started school at the Centre for Arts and Technology in Halifax and has found fulfillment and a direction for his life. His teachers find him to be extremely talented, and he is getting high marks in all of his classes. He’s taking digital film making and he has a very bright future ahead of him. Also on 29th of June, Mom had a major stroke. The worst damage seemed to be to her speech, and communication was almost impossible.

The first night in hospital, Mom was so not herself that she ripped out her IV and such and when Teresa and I arrived in the morning, Mom was tied into a chair and had spent the night in the chair in front of the nurses’ station. As a result, Sadie went back to stay with Reba and alternately her sister until Mom was released. I spent the next two weeks in the hospital with Mom to make sure she got on alright (the bathroom door was too heavy for her to open). We were told that she’d have to move into a long term care facility, but as a family we fought this and she is still at home today. I moved in with Mom when she was released from the hospital. David was here until the end of August, and during his stay, he had an epileptic attack. He’d never had seizures before. I called an ambulance and he had another seizure en route, and more in the following days until they were able to regulate him with medication. Shawna had to fly to Ontario from Alberta so she could drive her dad and his truck back to Alberta.

I decided to sell my home on Johnson St. because it was a burden financially, and I really had no need for it any longer. Tried the private sale route to save commission, but decided on 29 October to go with Josie Manna in Orillia. She put the house up for sale on 1 November, and it was sold the same day, with a 1 December closing! I couldn’t have asked for anything better than that, and it worked out well for my tenant too, because she was moving out on 30 November. So I’m now debt free, and I bought myself a ukelele a couple of weeks ago, so maybe I’ll be able to actual play a little bit of that by this time next year!

My walking is not as good as it was immediately following my angioplasty, but I’ve been through a lot and things will likely improve once I get into a regular regimen of exercise. My follow up scans ($250 a time thanks to the government’s refusal to help those with MS) have been good, and my family doctor, who, a week before I was treated said, “I don’t know that I’d advise you to do this, Jeanine”, now sees the benefits of the treatment. Check out this site for some information: http://www.angioplastyforall.com/ I lost a friend to MS in July. She was supposed to go to India to have the angioplasty, but never made it because of the MS, and our government’s refusal to budge. I’ve made some very good friends through this battle, and I’m sure we are going to win so everyone will be allowed to have an improved quality of life - even to continue living.

Mom is doing alright, but will never be her old self again. Much slower to move around, less energy, and a lot of memory loss combined with bouts of mild dementia. He macular degeneration is also a major concern, but there’s little else to do for her in that area. She’s at home, and that makes her as happy as she can be. Our aim to to keep her at home for as long as we can, and I pray that is until the end of her life.

I truly wish you the very best of the Season, and hope that your days are filled with joy. Blessings.

Jeanine

Pre and Post Angioplasty

This is the letter I sent to Mark Lane for presentation to the Health Ministers at the upcoming meetings in Newfoundland and Labrador on 13 September 2010:


My name is Jeanine Baker and I'm 53 years old, living in Orillia, Ontario. I was diagnosed with MS in 1994, but like most of us, I am now aware that I'd been displaying symptoms for many years before this.

Pre angioplasty: my physical life was in a downward spiral. I was relying on my walker even for getting around my house. Just sorting through the recycling and getting it to the street was a harrowing physical task. I could no longer climb stairs without having to pull myself up the railing with my arms. Once at the top, I had to rest and regroup before doing anything else. Grocery shopping required the use of a motorized scooter. Bathing was becoming increasingly difficult, and having a shower was out of the question. I could not run 'odd job' errands in my car that required getting in and out of the car a few times in an hour or so, because I did not have the stamina or energy to do so. It's my belief that, given the history of my disease and its progression, I would have required the use of a wheelchair in my home and on outings before or by the end of 2010. I was wondering when I'd have to enter an assisted living facility, and had investigated the option of travelling to Sweden for assisted suicide (euthanasia) as the disease progressed.

Angioplasty: 2 June 2010 Wow! As soon as I was allowed to get up off of the recovery table 3 hours after the procedure, I easily walked to the washroom without aid. I stood up from the toilet without using grab bars, and was amazed when I looked down at my feet and realized what I'd done. My son said it was like night and day from a few short hours before. I could walk forwards and backwards. I could squat and stand, and with my left (most affected by) MS hand, I squeezed the nurse's hand to the point of pain. We spent a night in the city where I was treated, and after a five hour trip home, I was able to easily walk up my mother's driveway and up two sets of stairs into her living room.

Post angioplasty: 13 - 26 June, 2010, I travelled to Halifax NS to visit my son, and was able to do site seeing. I had not had a trip out of Ontario in over 10 years. Walking was easy, but I did use my walker for longer walking trips, and I was staying up until 11 or 12 at night. My bedtimes had been 7 or 8 pm prior to the procedure. On 29 June, my 89 year old mother had a stroke and I spent 2 weeks by her side in the hospital, making sure the overworked nursing staff at our local hospital was able to do its 'normal' nursing duties where Mom was concerned, instead of 'babysitting' her. I could not have done this prior to my angioplasty. Upon her release from hospital, my mother returned to her home and I have moved in with her, now being able to climb her stairs. The first few weeks were extraordinarily taxing, because my mother also had an infection of which no one was aware, and it was making her very sick. I endured sleep deprivation, and as a result, my left foot drop returned as did the fatigue. But this was 'normal' fatigue - not fatigue produced by my body. As of the first week of September, three months following my angioplasty, I am now getting back into physiotherapy, and my left leg is regaining strength. I can still do the coordination tests with ease. I also no longer mix up my right and my left, being able to give directions much more easily now.

I have been weaning myself off of antidepressants, because my depression (present since long before being diagnosed with MS) has disappeared. I have been told by several people that I'm now 'glowing' and seem to be much more positive.

There are not enough words to praise what the angioplasty of my left jugular vein has done for me and for my family. A simple, easy, painless 40 minute procedure has totally changed and improved my life. In fact, I have a life again.

CCSVI_20100523.mpg

I just spent over an hour writing a bog but it all disappeared when I went to edit it. How very disappointing.

Dr. Freedman focusses on MS

Waiting for Liberation . . .

Happy, Jealous, Determined

All of these reports are coming in every day about someone else who's been Liberated, yet still Health Canada and the MS Society don't budge on the Liberation from CCSVI issue.

Hands formerly numb or useless coming back to life. Feet that have been cold for years warming up. I am SO HAPPY for these people, but find myself feeling something I've rarely felt in my life - jealous. Jealous because I want to be Liberated too, but Health Canada and the MS Society don't budge on the Liberation and CCSVI issue.

I've discussed it with my mother who is wanting to help me out with this and pay for me to leave Canada, my home, to have the procedure done in Buffalo, New York because Health Canada and the MS Society don't budge on the Liberation and CCSVI issue.

Reading the success stories make me determined to have the procedure done before CCSVI can take anything more away from me. I really want to stay in Canada to have the procedure, but Health Canada and the MS Society don't budge on the Liberation and CCSVI issue.

My guess, and those of scores of others is that there is too much money to be made by Big Pharma to even inch towards Liberation for us. Much more profitable for Health Canada and the MS Society to keep pushing drugs we can't afford, that make us sick, or help us a bit for a little while at us, hoping we'll shut up and forget that there's a solution now.

Health Canada and the MS Society don't budge on the Liberation and CCSVI issue, but we have seen the results and we're getting ANGRY. We need them to sanction this procedure in our country NOW!

MS is a "used to be" disease. CCSVI is now.

Written in March, 2010

I have Multiple Sclerosis. I was diagnosed with it in 1994 when I was 37, but somehow part of me had suspected it for years. I can remember putting money into the box for research donations held by a man in front of the Hudson’s Bay store at Bloor and Yonge Streets in Toronto in the late 70s. As he handed me my plastic carnation pin, for some reason the thought, “I could have MS!” popped into my head. I have no idea as to why that happened. I was fit, strong, healthy, and kind of clumsy. Then over the next few years, time and time again it would feel as though my glasses were misaligned, and I would spend all kinds of time - sometimes days - trying to adjust them, until they were finally sitting properly. Now I realize that this was to do with the MS, but I had no idea one’s eyes could be affected.

In the early to mid 80s, I was falling a fair bit, but that happens to all of us, right? One particular time in Toronto I was climbing the stairs to street level at St. Patrick Station on my way to work. I stumbled and fell amongst all of the other commuters. A little embarrassing, a little painful, but also kind of mysterious because again this little voice, “I could have MS!” I recounted this to my son’s father because it was so peculiar, but he just got mad at me for even thinking such a thing.

Over the next few years, the falls and the glasses problems continued, but it was a fact, and nothing to worry about. In the summer of 1993, my son, husband and I went on a vacation through some of the Blue Ridge mountains and hilly areas in Tennessee. We decided to climb a mountain to its peak, having driven as high up as we could go, but I became too winded to get very far. It was time to get in shape!

Shortly before March Break the next year I had bronchitis for the first time in my life. During March Break we made day trips here and there. On one trip we went to the Royal Ontario Museum and I started to have some trouble with my legs. We went to Ikea, and I tried to leap over some bollards but just ended up with bad bruises and a limp. By the time the week was over, my right leg went numb, and I had awful needle sharp pains in it when anything would touch it. It’s kind of hard to describe something as being numb yet able to produce pain with a mere touch. I went out and bought a pair of sweat pants to wear to work even though I worked in an office. I couldn’t stand to wear anything remotely abrasive, and if my miniature schnauzer jumped up on my leg it was excruciating.

After dragging my right leg around, and favouring it for 3 or more days, I decided I’d better see my doctor. He checked me over after listening to my story, and he seemed to be more worried about all of the bruises (he thought my husband was beating me, but such was not the case). He sent me to a neurologist ‘just in case’. By November, the MRI had been performed (lots of other stuff happened too) and I was officially diagnosed with MS.

MS was the better one of the two diagnoses I’d given myself through research - the other possibility (in my mind) was a brain tumour.

So, why have I written all of this down?

• Because in 1994 there was nothing one could do for MS. Mine was of the Relapsing Remitting (affectionately known as RRMS) variety. It wasn’t until 2003 that my neurologist thought I should try Betaseron - an injectable and very expensive drug that was helping some people with MS. I gave it 8 months, and the neurologist agreed that I might as well not continue.

• And because in 2009, Dr. Paolo Zamboni of Italy revealed a possible treatment for MS - one that he had tried on his own wife, and that made it so she could walk again. It is now March, 2010 and the MS community is so excited about the “Liberation” treatment, which unblocks or straightens out the jugular vein, allowing ‘trapped’ blood and iron deposits in the brain to flow out again. But we as MSrs are hitting road blocks when we ask about getting the Liberation procedure in Canada. Some blame ‘big Pharma’ who have the MS Society and maybe the government in their pocket. Heaven forbid there should be a drugless solution to help free those of us with this mysterious and incurable disease, heretofore referred to as MS, now being called CCSVI - Chronic CerebroSpinal Venous Insufficiency.

I’m now almost 53 years old. I have been robbed of my strength, my job, playtime with my now grown son, my balance, and my way of life. My family doctor saw fit to not renew my driver’s license in 1998, but in 2003 my neurologist said there was no reason for me to not have one, and so I got it back again. I have moved from RRMS to SPMS - Secondary Progressive. I suppose the last stage is Chronic Progressive, or CPMS, but I don’t know if that happens to all who continue to decline or not.

So, I’ve been aware of living with this MonSter inside of me for 16 years, and each year I see something else leave my realm of ability. I must now use a walker anytime I go out, and for the most part, indoors too. But I am one of the ‘lucky’ ones. Some of us go downhill much more rapidly. There is a small but dedicated MS support group in my city. At its ‘heyday’, we had close to 20 members. In less than 10 years, four of our members have died of MS complications. MS won’t kill you, but what it causes to happen in your body can.

Dr. Zamboni’s Liberation procedure offers hope for people with MS. Hope where there hasn’t been any before. Liberation could free up those in the early stages of the disease, and maybe bring some degree of relief to those of us in the more advanced stages. Why is it not being performed on MS patients? People are going to other countries like Poland, India and the USA for treatment. Why has our government not moved on this and said, “YES! You deserve a chance at a more normal way of life. You need Liberation - it’s within our grasp, and we’ll let you have it.” Some of us are spending our life savings to leave Canada and get help in other countries. That's just not right.

Meanwhile, we wait. We carry petitions with us and ask our friends to do likewise. We commune on Facebook to see how to apply pressure to the government and the MS Society. Trouble is, we don’t have the luxury of time to wait. Every day with this disease we decline a little bit (or sometimes a lot) more.

Don’t make us wait any longer. We need Liberation now. It might or might not work, but that is a chance I’m sure we’re all willing to take.