Letter to Mike

Mike, I truly am happy for you. I am disappointed though that you've taken to putting down those of us who seek or who have had the angioplasty for CCSVI. It's really not a matter or so there - I'm right and you're wrong so you should shut up and listen to me!

From what I've read, Campath is for MSrs with RRMS. It is not in the running for those of us with SPMS or PPMS. Apples and oranges. There is nothing out there for us, except for the hope of angioplasty for CCSVI, with which Dr. Zamboni's own wife was treated.

As a person who had (likely still have) SPMS, I have found great success with my angioplasty. Almost 8 months ago, I was given a new lease on life. Nine months ago I had one hope and very little spirit left. Two years ago, I had no hope and had investigated Sweden's Dignitas for when then time I knew would come that there was nothing left to my life but pain, suffering, and complete dependence on others to live. I was also wondering which assisted living facility to choose for my home.

Almost eight months ago, I had to use a walker to get around my home. I couldn't climb stairs. I could scarcely look after myself, but was stubborn enough to keep going because there was finally hope on the horizon. Then I had the angioplasty. I could climb stairs. Walk unaided. Stay up in the evening. Cook dinner without having to sleep immediately afterwards. Then, 3 weeks after my treatment, my mother had a stroke and required a 24 hour caregiver. I moved in with her because I can climb stairs now. I can care for her because I don't need someone to care for me.

Maybe I will slip back to a less independent state, but I know that studies and practise have advanced the angioplasty for CCSVI and doctors are learning more each day, because of people like me who forged ahead and went for what we knew in our hearts was right for us, and for those who will follow us. Those of us who don't want to take more drugs. Who can't afford to take more drugs. Who found hope with the CCSVI treatment. I know that if need be, I will go for a second, even a third angioplasty, because it keeps getting better.

Mike, please respect our choices in the way that we've respected yours. Don't get my Irish up - it might not be possible anymore because things just don't upset and affect me in the ways that they did before my angioplasty to treat my CCSVI.

blessings,

Jeanine

P.S.: I've gone to this site for years for more information about MS. His was one of the first sites I found to be comprehensive after my diagnosis. He started out small but has really grown over the ensuing years: http://www.mult-sclerosis.org/Campath1H.html

Caregiving

A letter I wrote to Virtual Hospice:

My mother is 89 years old. She has extreme scoliosis from polio as an adolescent, macular degeneration and glaucoma. On 29 June 2010, she had a stroke which made it impossible for her to communicate for 2 days. She was in the local hospital for 16 days and improved significantly over that period of time. Our family: my sister, brother and I fought to have her live at home instead of in a long term care facility. I have been fighting MS for the past 16 years, but 3 weeks prior to Mom's stroke, I was treated for CCSVI by angioplasty and my MS was eased greatly. I am now my mother's caregiver and get help from my 66 year old sister when she's able, from Red Cross for 14 hours a week, and from three nights of VON PSWs who allow me to get full nights' sleep. She is at risk for a fall, so we have a motion sensor that alerts me when she sets foot on the floor, as well as a nursery monitor which lets me be aware of her condition in bed at night so I or a VON member can be there if she needs us during the night, and to ensure that she remembers to use her walker on her trips to the washroom.

Prior to her vision failing, she read books constantly. Then talking books were a wonderful way for her to keep up with her 'reading'. We intend to try them again soon, but her attention span and concentration are lacking since her stroke, so we fear that this too will fall by the wayside.

Our days are basically spent in silence because music or radio bothers her, and she can't see the TV well enough and has no patience for it. I purchased a laptop computer in November so I'd have something besides crossword puzzles to do and to still be near her. I would try to engage her with easy crossword clues to stimulate her, but it was not something she enjoyed, but rather found it annoying. Most of the time she stares across the room or at the ceiling, and conversations are laboured.

Mom's language has not fully recovered, and she struggles and is frustrated with trying to find words that elude her. Sometimes we are able to finish her sentences when she asks, but concepts are difficult to grasp when attempting this.

She was in hospital in October with renal failure due to dehydration. She has since started drinking more, and everyone is vigilant in making sure that she takes in plenty of fluid.

She has been assessed as being in a palliative state, but does that really mean anything for someone in her state? When my father had cancer and was palliative, it meant something because we could see that he was dying and knew what to do to help him die with comfort at home. We assume my mother is dying, but is that a relative term, or is she dying in the sense that really we're all dying? During her stay in hospital in October, her blood pressure was at times in the 180/XX range. Last Thursday it was 100/60, two weeks ago 120/65, a month ago 110/60.

Mom has bad dreams on the nights when it is just the two of us here. They are more like hallucinations sometimes, and they seem to linger for the whole night, easily remembered the next day in spite of the dementia and memory troubles. I get called back to her room two and three times after a trip to the washroom some nights, having to reassure her that all is well. On the nights when VON is present, there is never an issue for her. Each of the three women report a 'good night' when I get up in the morning and can't understand why they never see any of the 'action'.

Another issue is eating. She is slowly narrowing down what she will eat anymore. Part of the trouble here besides the taste, texture, etc. is that she is sure that all fruit and fruit juices cause her to have bowel movements too often. She is extremely focussed on her bowels and how they move, but they've never been much of a problem except that they're a bit messy to clean up.

At times I feel as though I'm slowly losing my mind and am amazed at how much patience I have for all of this.