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My MS and the iVillage Family of Support

 

I was diagnosed with Multiple Sclerosis in December of 1995.  I had not been sufferingfrom unknown or undiagnosed symptoms for years and it did come a somewhat of a surprise.  I had developed a limp and my family insisted that it be checked out.  My Mom and Dad thought it could be a stroke or a brain tumor.  So off to my primary care physician and a referral to a neurologist the very next day.  I guess you could say I was an easy diagnosis.  The neurologist immediately setup a MRI in his building and the diagnosis was given by 11:00.  I have so much plax on my brain the doctor is still amazed I only have the problems I have and not more.  Was I surprised?  I guess you could say yes.  I really wasn’t having any other difficulties besides the limp.  I guess I ignored other things in the past such as the occasional numbness in my back that I thought was a pinched nerve or the changes in my typing ability from day to day but most days were fine.  Then there was the odd tingling that occurred down my arms when I would put my chin to my chest so I just didn’t do that too often.  These symptoms never stopped me from doing what I wanted.  The limp stopped me, so the quick diagnosis was a relief and I could think of worse diagnoses. 

 

I will tell you that I was no stranger to the disease.  My Uncle Jim had MS most of my life so I had some idea of what it was like.  He was diagnosed in the 1970’s, before the drugs used to slow the progression of the Multiple Sclerosis and when the biggest misconception existed.  ‘Take it easy and save your strength.  You do not was to use up all you strength, and you will be going into a wheelchair soon’ At the point of my diagnosis, I knew I wanted to handle my MS differently than he did.  Of course, I had advantages of treatments that where not available to Uncle Jim when he was first diagnosed.  I had more role models that showed me there was not guarantee that I would be in a wheelchair anytime soon.  Now there is a use it or loose it attitude rather than take it easy and rest you life away.  Over all, I have a better understanding of the disease and how to manage my life with Multiple Sclerosis.

 

iVillage has provided me with a great source of information for living with Multiple Sclerosis and a wonderful group of people to offer support, suggestions, help, ideas, an ear to chat with, or just a shoulder to cry on every once in awhile. There experiences have told me that I was not wrong to say; “My MS would be different.”  The tools available to everyone at the site have been wonderful and extremely helpful and it is nice to know you are not alone.  The board is great when you have a question you want answered, or you want to share you successes to help encourage others in their battle with this MonSter.  The MS Support Chat is a great place to meet other battling MS and share experiences and information.  Of course, I might be a bit bias since I am the community leader of that event every week and I love meeting new members.  Over the past five plus years that I have been visiting iVillage or being a community leader, I have developed great friendships and felt a very warm bond to others with similar interests and needs.  I have been very glad to have someone to “talk” to where I didn’t have to drive to a support group to get it.  Just turn on the computer J.  I count my experience and work with iVillage as one of the accomplishments of my life.  I hope to continue the work and my relationships with the many great people here for years to come.

 

As an update on my current condition: I am approaching the 10-year anniversary of my diagnosis, I am still walking, talking and chewing gum at the same time (something I tell my doctor every year).  I am employed full time and I am trying to write my book, but I always seem to run out of time.  I have been on Avonex (to slow the progression) and Tahitian Noni juice (to keep up my energy and immune system) for the past 5 years and it is working great for me.  I finished my 10th MS walk this past April and I have started to plan my 11th walk with a team from my office along with my dog, Arlo.  I rode my bicycle in two different events for charity this past year for a total of 35 miles.  I am realistic so I do not attempt the 150 miles to Lake Erie with other members of the cycling team.  I leave that for the guys that ride their bikes every day for miles, but my thoughts and thanks always go with them.  For the future, I plan to stay as mobile as I can for as long as I can.

 

 

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