Spotlight on...
Barb, Florida, USA
 Introduce 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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