Thursday, January 12, 2012

"M.S. And Me" by Guest Writer, Jane - HuMan to @JesseJaney

Our guest writer (Jane) in an overlay of Melbourne, AU,
her home city
Dear Readers,

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. 

Jane's story:

"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."


Mary here: I'll give you the second half of Jane's story in the next post.  Be sure to come back and find out why Jane's Summers in Australia are hellish!   I have learned so much about MS from Jane.


  1. Thank you fur sharing wif us Jane. Love and purrrrrrrs frum spike_cat.

  2. Jane
    Thank you for sharing your story and also for educating us about MS. Here's hoping you stay for a very long long time in remission. Continued blessings to you!

  3. My very dear Jane, thank you SO much for this guest post. Many of us have heard of this condition but we really don't know anything about it or its treatment and the efficacy of that treatment. We have no idea of the levels of severity and this is a complete and welcome eye opener. Thank you and I will be here of course to read the rest of your story. Love to @JessieJaney as always.

    Admiral's mommy

  4. Lovely JJ, I go along with all the thanks to you sharing your story and let us learn about MS. I only had an airy idea of it, as many, I guess. Send love and xxx´s from Janis to you

  5. thanks you fur sharing your story, its furry halpfuls to lerns how others duz deal wiv they health isshews, even if it iz a diffrint kind of problem. I wishez you well *softpaw*

  6. Typist's brother has MS. It's a difficult disease at best. We hope they can come up with some better diagnostic criteria and treatments. Thanks for sharing. *ducky hugs*

  7. I also hope that your remission lasts for many years. You have a great attitude, and I wish you the very best. Julie

  8. *(((HUGGING))) my pawsome furiend JJ"s HuMum tight* Thanks for sharing your story with us, my Mom dad no idea you had MS. We will keep you in our purrayers and hope they make medical strides that keep your condition in check. Lily AND Luna send #Healingpurrs and lots of love! Love you too Mario's M!

  9. This was so enlightening. May you stay in remission and live everyday to it's fullest - you deserve the best.

  10. To all of you who have sent such wonderful supportive messages and comments, a BIG thank you! To Mary I wish to sincerely compliment and thank for providing me with this opportunity ... she is my hero! Her strength of mind and courage is an examply to us all.
    With Love
    Jane (Jessie just in from her night patrols ... no gifts for me thank goodness!

  11. Aunty, am sorry to read you have this (at times) debilitating disease. We shall be with you always, to help steady your gait and cheer you when you are down. We sincerely hope and purray your health does not deteriorate any further and you can enjoy each and efurry day with Jessie. xxx


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