Jooly's Joint: people with MS supporting each other

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Barb, Florida, USA USA

BarbIntroduce yourself!

I am 56 years old, or young, depending on how I feel on any given day. I'm single and live in southwest Florida with one very spoiled dog and a live-in aide. I happen to be one of the 'lucky' few people who progress to being extremely limited. I only have use of my left arm/hand (wouldn't you know, I'm naturally right-handed) and, thankfully, my head.

When did MS enter your life?

Unofficially, my first attack was in 1966, but I wasn't diagnosed until 1972. That was before the MRI was known and I was diagnosed by a process of elimination. After everything else was ruled out, I was told it was MS, but to keep it a secret because I'd lose my job if anybody knew. My neurologist refused to write MS on any report. At that point and for the next 12 years, MS was a 6 week minor inconvience every 6 years. Then it became secondary progressive and the real 'fun' started.

What do you now know about MS that you wish you'd known when you were diagnosed?

Everything! Back in 1972 not even the doctors knew much. The things that were written were years old and no help. There was no Internet to search for information.

Lowest point in your life with MS

That would have to be 1987 when MS progressed to the point where it forced me to go on disability retirement. At that point, I made what turned out to be a very intelligent decision, but at the time, caused many tears. I left my home and friends in NJ and moved to a small town in SW Florida because the cost of living was much lower and I had siblings who were saying very supportive things. Both reasons have proved to be very wrong, but thanks to some fabulous friends, I'm as happy as can be under these circumstances.

Highest point in your life with MS

I think discovering Webtv, which allowed me to get online from my bed using the TV as a monitor, has proven to be the best thing. It has saved my sanity. Because Webtv uses a cordless keyboard, I can email, chat, surf the Net, create Web pages and be a part of Jooly's Joint from my bed using only one hand.

What do people with MS need to help them enjoy fulfilling lives?

A very big sense of humor which includes the ability to laugh at the dumb things your body does without consulting you first.

When and how did you discover Jooly's Joint?

It must be over 2 years ago that an email pal gave me the link to Jooly's. Since then, I've shared my daily ups and downs with many good and close email friends who can share these same feelings.

What keeps you coming back to Jooly's Joint?

Almost every week somebody mentions something about a symptom that I had dismissed as just me. It is so reassuring to know there are others who share these things. It reminds me that I'm not so alone in this, which because I'm home bound puts things in a perspective that I can't do alone.

What are your ambitions?

I just try to enjoy every day and not dwell on the many 'what ifs'.

What message would you give to newly diagnosed people?

Try not to over-react. Get as much information as you can handle. When you are emotionally ready, talk with other MSers and never give up hope. There are new discoveries being made every day.

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