|Our guest writer (Jane) in an overlay of Melbourne, AU, |
her home city
I have been so blessed to have such great guest writers, and I'm equally pleased to introduce another one to you today. This gal also has a debilitating disease that there is no cure for. When I heard a piece of her story a week ago, I knew I had to ask her if she wished to guest write.
"Hi I'm Jane, the huMum of @JessieJaney, and I'm writing this in answer to @Mariodacat Mom's kind invitation to provide her with a "guest post" for her blog. I do not have Parkinson's Disease but I do have a degenerative disease of the central nervous system too and its called Secondary-Progressive Multiple Sclerosis. Oh goodness me where do I start with writing about "MS and me"? I feel such a fraud, as at this moment in time I'm basically healthy.
What is MS: It is now generally accepted that MS involves an abnormal response of the body’s immune system that is directed against the fatty sheath (myelin) that surrounds and insulates the nerve fibres in the central nervous system (the brain, spinal cord and optic nerves). It affects different people in different ways with symptoms being mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. They do know it affects more people the further from the equator they reside. It is presently incurable. It has many types - Relapsing and Progressive and the variations in between. The worst being Primary Progressive which seems to mainly affect those diagnosed at an early age (in their 20's) and invariably leads to an early death from such complications as pneumonia.
My History: The first thing that hit me was depression at the age of about 40. My wonderful GP and I both agreed it was probably the beginning of the "change". After numerous and various anti-depressants (plus sessions with psychologists and psychiatrists), I just wasn't improving and it had got to the stage I had to crawl off my bed to get to the bathroom because of the "lightening strikes" firing off in my head. For about 2 years I gave up on the medical world but my worried boss and dear friend phoned my brother (Jessie's Uncle Hugh) who, in turn, insisted I go back to my GP after he visited him to itemise my symptoms. The result was an MRI (Magnetic Resonance Imaging) that showed extensive demyelination and the resulting frightening initial prognosis of Relapsing Multiple Sclerosis. Things moved quickly - days later I was seeing a Neurologist and hours after that I was hospitalised for the first of many times. I was prodded and poked, scanned and x-rayed, eye-tested, spinal tapped (ouch) and then for three days I had a shunt in my hand and a twice daily infusion of high dose corticosteroids as at that time I was suffering from an exacerbation (meaning, I'd relapsed) and steroids were needed to kick-start the body into remission, or as we say in the MS world into remitting.
To cut a long story short - that first visit to a hospital occurred 10 years ago. Since then I have been through the relapse/remit cycle so many times I can't count. Three day stays in hospital for corticosteroid treatment have become an annual norm in my life. For this post I looked at my MRI scan history and see that I have had over 30! It's a wonder I'm not a magnet by now! I've spent 6 years on Interferon Beta-1b (called Betaseron) as these 2 times a week, self- administered injections are supposed to delay the onset of relapses and progression. This has not yet been proven in Clinical Trials to my satisfaction. The side-effect of this drug is "flu-like symptoms" so, with the begrudging approval of my Neurologist, I decided to quit. I am prepared for the consequences of my actions but I do not fear them, as living with the flu for 6 years is the pits.
I now have Secondary-Progressive MS but have been on a plateau for a number of years. I do have a permanent limp and peripheral damage to the sight in my right eye. I suffer cognitive dysfunction, meaning I no longer have the ability to quickly problem-solve or perform calculations. My balance is "crappy" and I often have falls, usually in the most embarrassing places like the supermarket car park, so it is rare to find me without a scrape, bruise or bandage of some kind. At times I'm reduced to using a walker to get around and at other times you could pass me on the street and only notice a slight limp. I do try to eat a healthy diet and get my 1/2 hour of sunshine a day (my Vitamin D hit) but find that summer is hellish."