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.


1 comment:

  1. Wishing you and yours a very Merry Christmas, showering you with continued good health and happiness as well.