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My brother and myself use to get spasms in our abdominal area also, but Baclofen has taken care of this, it was like someone was massaging our stomach it was very creepy. Haven't had it for year's since taking this medication the same with my brot...
I was on Flexaril about 30 yrs. ago when I was going for extensive physio therapy when I was in a hospital for 3 months to try to get me straighter, at the time I had not seen a movement disorder specialist yet. I was taking 6 pills a day and at t...
Mine had nothing to do with my heart it was muscle spasms that would start in the middle of my back and work it's way to my front and it was like being in a bear hug and would very painful. Since going for massage therapy I no long get these, most...
I too have the chest pain. The way my heart doctor put it, or the way I took it is its like an irritated artery. I too have to use Nitro when I have the pain. He said that at the moment it isnt goin to kill me. I am 43 and am a smoker, of course y...
Hi,my name is Patrick Jensen and something very similar happened to me when I was seventeen,about six years ago.It has persisted ever since,seeming to get better then becoming far worse at times as well as changing locations and intensity.I'd be v...
onmom; There are support groups in Ontario if you have not tried one of these maybe they will feel a need, I help run the one in Hamilton so if you are interested in sitting in on one of the meetings and meeting others with this disorder you are w...
I was getting the burning sensation in the front of my feet this summer and I went to the GP and was sent for blood work and he sent me for orthotics and my sugar was slightly elevated so I cut back on dessert and sugars and anything white, rice, ...
It would be interesting if something like this person getting Dystonia from a flu shot has something to do with all of us getting Dystonia from some illness associated with the flu strain at some point in our lives. It would not apply to those who...
Profile Information
- In the online health communities I participate in, I'm:
- not really sure where I fit yet
- More about me (my health interests and reasons for joining WEGO Health)
- I have Cervical Dystonia for 36 yrs. and I also have two brothers that have Dystonia also, one has general dystonia and the other has cervical with his left hand affected. We are a 3 of 7 childern who have been dygnosed with this disorder but I can see others in my family showing sign's of having it also. I'm co-leader of the Hamilton Support Group and am always looking for more information, I always feel the more you know the more impowering. I've had two surgeries one was a fusion when I was in my early 20's when the Doctor's didn't know I had Dystonia and another in my forties it was called a denervation and one of the muscles cut to help with the pull to the right and should from coming up. It did work in some respects because I am straighter and I no longer get pain in my right shoulder but I still have to hold my head up and get Botox injections. I feel my Dystonia started when I was around 18 because when I would go to bed my head would push into the pillow and I could turn over on my other side and it would stop. The family doctor would look at me an couldn't see or feel anything wrong. When I started to work I was having difficulty turning my head and started to go to a ciropractor and this seemed to help but for a short time. Then I got married at the age of 23 and the photographer was always asking me to hold my head straight when I thought it was. A year after that my jaw locked and they thought it was my wisdom teeth so I went under anaesthesia to force my jaw open to get to my teeth, so when I woke up my head was on my shoulder. Still no doctor said it was Dystonia so I went for therapy which straightened me out somewhat and I went back to work and in no time my head was back on my shoulder so I was sent to an orthopedic surgeon and of course he felt that surgery was the only thing to do because C1 and C2 slippage, but before the operation he did send me to a neurologist who did not know what was wrong so I had the surgery. But we with Dystonia know this was not the sollution, just another problem for now my head had pulling but less range of motion which made it difficult for therapy. I was on a stricker bed for a week and a half and developed blood clots in both legs and could no longer be on the pill. This all happened within the first two years of my marriage, I just lucked out to have married a great guy who was just as worried as I was. I became pregnant the next year and had a wonderful baby boy, but my know my body was a wreck and I needed extentive physical therapy, so I was set to a arthritic doctor who sent me to a live in physio institution with state of art therapy. I had Bio feedback and stretching and strengthing excercising which was able to get me to a point were my head was no longer on my shoulder and some releif. While I was there I was seen Doctor of Physical Medicine and that was the first time I heard the word Dystonia. I was there for 3mths and then the next year for a mth. which I am very grateful for. And of course I was sent to a Psychiatist to see if it was all in my head which it is but not that way. It took my about 18 years before I got a Neurologist who I like very much because he deals with alot for patients with different forms of Dystonia and has been a great speaker at our group meetings. My life at this point is to educate, fund raise and help those who have Dystonia and the community I live in, our support group has 50 members. The reason I feel it's important to get involved is for the future generation do not have to go through all that I have and for better treatment and hopefully a cure.
Comment Wall (11 comments)
- At 11:19pm on September 26, 2009,
tremors said… - I have heard that is a very nice place to stay. My son and aunt and her daughter are going to see the gospel group called the gaithers they have 3 shows this weekend. I don't know if you have ever seen them on tv or not but it is alot of groups. It is a good inspirational weekend. I have been having some problems with my dystonia hope the dr. can give me some new meds Mon. It's a new dr. so I don't know what to expect. Thanks for emailing me back.
- At 2:05pm on September 26, 2009,
tremors said…
- Hi Thorns just saw your post on going to Myrtle Beach on Oct. 2. I was trying to see if by chance if you were going to the Gaither Fest there. I just happen to be going the same day. I was wondering kind of weird we were going to the same place the same day. It is a great place to go. I hope I didn't scare you.
- At 9:23pm on September 16, 2009,
Nancy Muller said… - Hi Thorns, email me at nmuller406@aol.com and let me know where to send the article to. Thanks for your interest, as there is really so many genetic links to different religions and races, and there certainly isn't enough awareness. So write me at my personal email and let me know where to send it. I can even copy and fax it too. Thanks for your interst. That's what awareness is all about, spreading the word and taking an interest. Nancy
- At 10:59am on June 17, 2009,
Deanna said… - Thanks for the explaination.
Deanna
- At 12:01am on April 26, 2009,
beka said… - Hi - Do not worry - no plans of LEAVING at all.. we have too good of a thing going on this Forum.
beka
- At 8:16pm on October 21, 2008,
bentnotbroke said… - Hiya thorns!! Glad I finally found you! Now, I can't find the friend invite....getting tired, could be time o quit.
- At 11:45am on September 19, 2008,
Nurse-florist-home stager said… - Hi everyone, My name is Kathy. I am a nurse in Victoria Harbour, Ontario, Canada.
My mom suffers daily from essential tremor; she is 80 yrs old.
Her symptoms first started when she said she was about 40 yrs old. Those symptoms she tried to hide from people but then they worsened over the years.
The only relief she has is a time when she can not experience it; but I can, and that is when she is asleep. It is nice to see that she does not experience tremors then and I always wished for her that during her 'waking hours' she could be relieved of the same.
However, she goes about her daily routine as she lives out her life.
I am writing on this forum of special and kind people to ask if there is someone out there who knows of a support group that I can offer my mom and ultimately a friend who would be in their senior years as well who can share time together with my mom, perhaps shopping, going for a coffee/tea, or just talking who has essential tremor as well.
My mom has lived with essential tremor now for so long but she is very embarrassed as well.
Her tremors do worsen if she suddenly becomes upset with something or is worried about something.
I can tell when she speaks with me on the phone if she is worried about something as her voice worsens.
Sometimes it is hard for her to create long sentences as it sounds as though she runs out of breath. She can control this when more relaxed.
She is able to speak with improvement when she knows that it is better when she slows down and creates shorter sentences.
I live 2.5 hrs from my mom and wish that one day we can live closer so that I can see her every single day. Instead we speak with one another over the phone.
What I am hoping for here is that someone knows of a friend(s) who my mom can spend time with so that she knows that she isn't alone with this condition. She realizes that there are other people who have essential tremor, but I ultimately feel that if she had a friend(s) who live with essential tremor as well, then she will feel that she isnt alone.
If you can help, would you kindly email me, james_kathy@rogers.com
I thank all of you for reading my message. I thank you on behalf of my mom who doesnt know at this moment that I am writing this. I am writing this for the love or my mom and wanting to shed some of her loneliness.
From a loving daughter, Kathy
- At 8:42pm on September 9, 2008,
bentnotbroke said…
- Thanks, Thorns, it comes highly reccommended. I hope to learn to use it without too much headache.
- At 6:22pm on September 2, 2008,
Jnufish said… - Thorns, I was reading your message about tips and tricks in managing your dystonia. In it you mentiona cervical pillow that you use. I was hoping you would let me know where you got it? I would love to have a pillow I could use. I have tried a lot of different ones and haven't really found one that will support my neck. Any info would be helpful. Thanks!!
~Michelle
- At 10:17pm on July 3, 2008,
luvslulu said… - Hi Thorns!
What a FABULOUS job you have done to raise..not only Dystonia Awareness to your community... but to generate such great fund raising events!KUDOS to you! I agree with Ellen below.. your whole family has been thru the wringer. It is so inspirational to see people like yourselves give so mch!
Be well, and welcome to the group!
Luvslulu...aka Penny
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