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| June Krahn -- sajun | member since 10/2003 9,148 hits
Last Time Online: Last Month |
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| Have: | ~ Faith in God, wonderful family and friends~ | |
Want: | ~A cure for All movement disorders~ |
| Title: | Inspection Supervisor |
| Home: | Kenosha, WI USA |
| Company: | American Motors |
| From: | Kenosha, Wisconsin USA |
| Industry Category: | | | Universities: | Gateway Technical Institute Accounting for Business Bob Miller School of Real Estate Granada Hills CA |
| Industries: | | | Interests: | Internet, websites, books, animals, family, music, movies, walking and Dystonia support groups, |
Under construction, somehow I wiped out all the info on this page so will try to get it fixed ASAP
This page is meant to help people with movement disorders such as Parkinson's, Dystonia, Essential Tremor and others. Nothing will be for sale just free information and resources to help anyone in the world.
Overview of Dystonia
Dystonia is a neurologic movement disorder characterized by sustained muscle contractions, usually producing twisting and repetitive movements or abnormal postures or positions. Almost all dystonic movements share a directional quality that is typically sustained, sometimes for an instant, as well as a consistency and predictability Dystonia movements are directional, forcing the involved body part or region into an abnormal position, which is consistently present.
Do You or Your Child have a movement disorder? Dystonia is the third most common movement disorder after Parkinson's Disease and Tremor, affecting more than 300,000 people in North America. Dystonia does not discriminate, it can affect any age group, and all races and ethnic groups.
People all over the world suffer from Dystonia. Do you or someone you know suffer from Dystonia? You Can Make a Difference in Someone’s Life by being informed.
Check out Tyler’s Tyler's Hope for a Dystonia Cure, He is a brave and courageous young man.
Ed Cwalinski's Dystonia Media Clips
These films highlight me after undergoing dbs for dystoniaClick Here
Tip for you, when you are on someones page you would like to have for a friend check the box so they can see your email address and add you. They will receive an email and say yes if they wish to be a friend. ;o)
A bit about my husband Gary who was diagnosed in 2004 for Dystonia.
My husband Gary had DBS in Jul of 2005 that was unsuccessful as the
wires were 2ml off. In 2006 we moved back to Wisconsin and began
treatment at Rush Medical Hospital in Chicago with Dr Verhagen and
surgery in 2007 by Dr Bakay. I wish we would have had them from the
get
go.
Backing up the first surgery went well, I could hardly believe it when
Gary was so sharp and in good spirits. He walked in the house on his
own, folowed the hospitals post-op instructions and was moving about
extremely well after such a big surgery. He had both sides and the
battery done in exactly 3 hours. Most of the people I met who already
had DBS saw red flags and questioned the neuros weekly programming.
But
according to him he was the best in the area. In my humble opinion the
experience was with Parkinsons and tremor but not Dystonia which was a
much tougher nut to crack. Now fast forward to his 2nd surgery in
Chicago. Dr Bakay is an excellent surgeon by the way and Dr Verhagen
and excellent neuro along with his assistant Peggie. Gary had a few
good programmings but they did not stick and Dr V felt he should have
another consult with Dr Bakay. The first consult Dr B said surgery was
and option but also the last resort. On the second consult pre-op and
surgery was scheduled.
It was a 12 hour surgery and back a week later for the battery.
Dr Bakay had to remove all the old hardware (wires) and route the new
ones which took a long time as the new ones kind of want to go where
the previous ones were. The following week the kinetra Gary had still
had a full charge but Dr B had to do some rewiring to ease the tension
and pulling in Gary's neck from the first surgery. The Dr told me he
did not know if it would help but the wires are in a different place.
Well it did Help and we are happy about that.
Now I want to address the problems Gary has had since surgery, I am
happy to say he is improving.
I brought home a very weakened husband. We had a home care nurse and
physical therapist and later pt at our local hospital. The pt did not
help but looking back Gary was 2 years older for the 2007 surgery and
had not been active at all because of the blephs mostly. Of course
programming had to start from scratch and before the holidays he took
some nasty falls, later the Hz/ rate was lowered correcting his
balance
and ability to move about getting out of his chair in and out of bed
etc.. But then his speech was badly impaired. So back up with the rate
and the pw was lowered his speech is much better and his mobility is
pretty good. He and I both feel when his eyes stay open and he can
move
about more the rest will fall in place oh and his neck needs to
improve
a bit more. Importantly he say's he feels much better. Those of you
who
have had programming most likely know exactly what he means.
So Nancy Pam and all who are going through this just hang in there and
if you don't feel your neuro is right for you go somewhere else.
Please email me privately anytime if you have any questions. I am sure
I missed a few details and sorry for making this post so lengthy, Hope
it helps someone anyone.
Sincerely,
June Krahn
Kenosha, Wisconsin
DBS for Dystonia support groupHelp For All
DBS Surgery support groupHelp For All
SOCIAL SECURITY DISABILITY SSI BENEFITS
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