When this blog was started, both of us (husband and wife) were diagnosed with Parkinson's Disease. On May 2, 2013 wife's diagnosis was changed to Essential Tremors without Parkinson's, and husband's diagnosis remains Parkinson's Disease It has been a long journey to date!
Now, back by popular demand, here is Jane, huMan to @JessieJaney. (If you missed Part I, scroll to the bottom of the page and click on Previous Post.)
"Heat and MS: This is my version of hell! Late one night, about 7 years ago I was sitting in a lovely lilac scented hot bath when suddenly I could no longer sense my legs. They weren't numb; it was like they had disappeared! I was terrified as, at that time, I only weighed 45kg (about 99lb) and did not have the strength to get out of the bath to a phone. With a pounding heart I pulled the plug and sat there. Jessie's predecessor Zoe (another black cat) sat with me for the next 3 hours. Gradually my legs awoke and I was able to flop out of the bath and drag myself to my bed where I fell into an exhausted sleep. The next day it was as though I'd had a nightmare but, as I was still wrapped in my towel, I'd knew that it wasn't. A few hours later, I saw my GP and he explained that MS sufferers often have what is called a pseudo-exacerbation which occurs when the core body temperature rises.
Imagine living without the luxury of having a hot bath or shower! Imagine living in a country where the average summer daytime temperature is over 30oC (86oF)! Imagine living with the fear that a slight infection might raise your body's temperature! If you can imagine this then you know the apprehension that is my shadow. This summer has been a bad one for me as a new symptom has raised its wicked head. Not only is the temperature causing me problems with its regular "pseudos" but they now bring with them cramps. Enough of the whining, Jane!
Negative Side-Effects: I have gone from a relatively healthy and happy woman to one who hides from the world. I gave up work 10 years ago when I no longer had the ability to concentrate for the periods required to continue to be a successful Office Manager and for 4 months of the year I'm a virtual prisoner in my air-conditioned unit. Air travel is now a thing of the past as I am unwilling to risk the effects of air pressure.
Positive Side-Effects: I am fortunate that my disability pension, inheritance and superannuation enable me to live a relatively comfortable existence. I found the internet and over the years have played in such games as Palace, Second Life and now, Twitter. I have made many wonderful friends, people who I will never meet but who have touched my heart. I've learned the wonders of Adobe Photoshop, although I do prefer using JASC Paint Shop Pro (now owned by Corel Draw who have completely stuffed up the newer versions of PSP). I have had the joy of being accompanied by two wonderful cats (first Zoe and now my fearless Jessie). In Twitter Jessie displays my real personality. I guess that the staff of anipals really do take on the image of their employers … or is that around the other way? Most importantly, this year I've learned to be less selfish with now having to be the carer, in a small way, of my carer, my darling brother, Hugh.
So that's my story and I hope that it has given you a small insight into "MS and me."
Mary here: Jane your story has been so valuable in teaching us all what it is like to live with M.S. How scary it must have been to be trapped in a bathtub and not to feel your legs or be able to pull yourself up. I can't imagine.
To quote one of our mutual Twitter friends "Jane is so brave to come forward with her story." Thank you Jane for sharing your story with us so we could get to know you better and understand through you just what it's like to live with M.S. I do hope you will come back again and update us on your situation. My thoughts and prayers will always be with you as you bravely battle this disease.