My life story….
My name is Sharon Taylor and I’ve been married to my guardian angel Jim for 21 years. We have been blessed with two wonderful sons now aged 18 and 20.
I’ve always said I have been a nurturer. My passion has been children. I have worked with youth since I was a teenager. I ran an in home childcare from 1990 till I had to sadly close my doors April 2002 due to the effects Multiple Sclerosis was starting to take on me. I have always invested myself into my community with pure compassion and care. I’ve been a coordinator of a few community co-operative play groups; a network leader for the Child Care Providers Association; sat on the PTA of my sons’ elementary school; volunteered in the library of their middle school. I have volunteered many hours with the MS Society as well as Carleton Lodge Long Term Care Facility. From 2003 until June 2010, I have been a member of the volunteer support committee for the 2784 Governor General’s Army Cadet Corps.
I love what I do. I fear having it taken away due to MS. Only being 43 years old, I am now in the secondary progressive stage and still progressing and with the current treatment system; no hope of improving. Being pro-active, I need to take action now as I fear in the near future; life in an upright position will be a thing of the past. As MS creeps through my brain and spine it is taking away my quality of life. As with many MS’ers I suffer from the following head to toe affects:
Ø In 2001 my journey with MS began with a lost vision in my right eye and depth perception in my left; I also lost my equilibrium. The sight came back after a few months only to go in my left eye; this condition is called Optic Neuritis. I have it ongoing showing up from time to time as blurry vision, double vision, grey vision. This prompted me to stop driving. To this day I suffer from equilibrium and depth perception issues.
Ø I have severe muscle spasms mostly in my legs. I do get them in the muscles between my ribs frequently; this is called the MS Hug. I am on medication to calm these but for the most part it does nothing.
Ø Bladder and bowel issues top my list as well but I won’t go into those, you can guess.
Ø I have major balance issue; my legs just don’t want to move as much anymore, except when the spasms hit. I must use a cane when I am out of the house. Inside I wall/ furniture walk.
Ø I have sharp, burning pain which travel the path of my nerves in my right arm making my arm useless for the most part and my hands and feet feel as if they are in frozen wool gloves and socks but add a pins and needle sensation at the same time.
Ø I suffer from mind numbing fatigue. Sadly it’s not your regular “boy I worked a lot and now I am beat” fatigue. This is bone numbing, physical, mental I could sleep all day after sleeping all night fatigue. I take yet another medication for this but does it really work, hmmmmm?
Ø I suffer from cognitive problems associated with MS. My head feels like it is packed with cotton batten. I can’t retain information so I make sure to write everything down. I can’t talk on the phone for longer than 5 minutes as I cannot recall the start of the conversation. Many say they have the same issues but they feel much better after rest or blame it on age.
Ø I went for cognitive testing 2002 as I feared I had early on-set Alzheimer’s. My mother was diagnosed with this disease the same year I was with MS. I was so happy when I was told it was due to MS not Alzheimer’s, funny what makes me happy.
Ø I suffer from swallowing issues now and again. I can even choke on water.
Ø Sometimes clothes sting my skin and a light breeze burns.
I was initially diagnosed with relapsing / remitting Multiple Sclerosis April 29th 2001. I was started on Betaseron as my first MS treatment, this interferon didn’t slow down the frequency of my flare ups. Five years ago I chose Novatrone, a chemotherapy treatment for MS. I did 8 treatments, one every three months for two years. After Novatrone I went treatment free for a bit. Presently I am on Copaxone but I am still progressing so what now……………………..
I WANT TO BE LIBERATED. IT’S MY RIGHT!
I went to Toronto for an ultra sound Doppler scan September 15 2010 and was diagnosed with Chronic Cerebro-Spinal Venous Insufficiency (CCSVI). This is compromised flow of blood in the veins draining the central nervous system. Dr. Paula Zamboni brought this to the fore front to show a relation with Multiple Sclerosis.
This finding has brought hope back into my life. Sadly Canada has let us, MS community, down by claiming insufficient study despite Dr. Zamboni’s amazing outcomes. In order to take advantage of this treatment, I must head out of country to get The Liberation Treatment performed. This Liberation treatment consists of an angioplasty of the veins and in some circumstances insertion of a stent (similar to current cardio treatments). The treatment and associated costs will be around $14,000.
Like most families, we don’t have that type of money. My husband is self-employed and I have been on CPP disability since 2000. I had no choice but to go back to work as CPP disability just doesn’t cover the cost of living. Thank goodness I am blessed with a boss who understands and accepts my limitations unconditionally. I work part time in a sit down position. I cannot make it to the bus stop so she or a family member or a good friend drives me to and from work. I have a Para Transpo pass but they are unreliable and have left me stranded a few times.
CCSVI LIBERATION TREATMENT will free me of symptom medication therefore less financial stress on our government, Trillium drug coverage. I could work full time so one more person off CPP disability therefore less financial burden for our government; doesn’t this make sense?? By the way, treating an MS sufferer with angioplasty is about $1500 in our country. How much does it cost to support a person with MS in medications, rehab, assistance, CPP disability? My MS meds alone cost about $3000 a month. The math is shocking!
After the Liberation treatment I am hoping to be drug-free and on my way to being disability-free and able to enjoy my life with an improved quality of life.