John's input on DBS

[Stream BB <john@xxxxxxxxxxxx>]

Hello, there to all on this wonderful list.  I have learned more about PD in 
the scant 3 weeks I've been reading here, than in the whole two and a half 
years that I have been with John.  I am Kersty Franklin, and met and married my 
husband John two years ago.  At age 62, he has had symptoms of PD since he
was 45, although not diagnosed until age 52.  In 1993, he had a pallidotomy, 
and then in 1999 he had DBS surgery at Toronto Western Hospital.  He recently 
wrote to someone who is about to undergo DBS, and it dawned on me that many may 
want to read his comments about the procedure and his feelings about receiving 
it.  I tried to send the entire copy of a newspaper article that he wrote 
shortly after the surgery, but it was too lengthy for this post.  I am going to 
try and edit it and send it in another email entitled "Ciberman Reporting".  If 
that does not go through, (the list will only take a posting of so many words), 
you may write John directly at john@xxxxxxxxxxxx or reply simply through this 
listserve, and I will send it to you in a Microsoft Word document. Last 
evening, John gave his second speech in the manual for Toastmaster's, and it 
was amazing to all who knew him that he was somehow able to be articulate 
enough to give that speech for a full 5 minutes....as much of the time, his 
voice is unintelligble to everyone (even me included at times).  Here is what 
he shared with someone who is about to undergo DBS surgery (at the time he 
wrote this yesterday morning, we didn't know if it was a palidotomy or DBS).

John's message:

I'm not clear from the information that was given us whether you are having
a palidotomy or DBS.  The Palidotomy is irreversible and I would caution all
who are in the process of having one that if I were them, having had both, I
would much prefer to go for the DBS which I think has minimal effect on your
brain. I was one of the very unluckly few who had a stroke during or shortly
after palidotomy, in which I lost my ability to speak normally, and which
still is as bad as it was ten years ago. Therefore, my opinion undoubtedly
is biased.

Weighing up the effects of either or both operations is very difficult
without the benefit of knowing what life would have been like had I not had
the surgery. Its like the elephant story...

A man got into a railway carriage, one of those old fashioned ones where the
windows opened, and sat down opposite another man who had had a large pile
of folded newspapers beside him. The train was one of those commuter trains
I remember from my childhood that stopped every two or three minutes on its
way into London. With a hiss and a sigh, the train restarted and the man
took up what obviously was a dedicated operation of folding the top
newspaper into a neat rectangle then opened the window next to him, threw
out the folded newspaper, and shut the window again. London commuters are an
introspective lot, and it wasn't until about five stops later that my friend
plucked up the courage to ask this person "excuse me, sir, I couldn't help
noticing, but... why throw out the newspapers?". The passenger replied in a
tone that made it clear he thought the answer obvious: "to keep the
elephants away!". My friend, astionished, replied "but there aren't any
elephants" to which the bemused passenger responded "yes, - it's effective
isn't it?"

Of course, we will never know how bad Parkinsons might have become had I
NOT had the treatment. In my case I never turn the DBS stimulators off, so
except on those rare occasions when they switch themselves off spontaneously, 
I never get to know the very bad tremors and near-paralysis that I believe I 
would be
suffering if I had not had the operation.

I do know  that I still do most of the things I  did before - like play
golf, and ski in wintertime. My golf never was much good, but now I manage
about 55 strokes for nine holes  - on a good day I can hit a drive about 210
yards more or less in the right direction, and can  ski down almost any hill
doing parallel turns. I am a certified CSIA ski instructor and although my
style has suffered so I can't instruct officially any longer, I still enjoy
introducing our bed & breakfast guests to the snow.

Since my operations I have completed more than a hundred consulting
assignments, some quite complicated, and met, courted and married my new
wife Kersty, the most gorgeous and kindest woman in the whole world, and
started the bed and breakfast business which is booming.  If you have any
doubts, just click on www.streambb.com  to see the scope of what CAN be
done, even with Parkinsons.

Sure, lts not perfection, but then, what is?

Good luck with your own operation(s) and let me know how things go please.

Affectionately, John

John & Kersty Franklin, Proprietors
www.streambb.com
www.bbcanada.com/thestream
www.bedsandbreakfasts.ca/the_Stream.htm

----------------------------------------------------------------------
To sign-off Parkinsn send a message to: 
In the body of the message put: signoff parkinsn