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05/07/2009 02:48 AM

Why am I here?

Spydr666
Spydr666Posts: 5
New Member

Ive been dealing with this crap since I was 6. When I was 15 I was finally diagnosed properly. Of course back then TS was a myth. My Dr. was on the cutting edge of all this and was frowned upon for his ideas. I would like to find a chat room to chat with adults.

Sean

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05/21/2009 07:57 AM
Nevayda
 
Posts: 7675
Group Leader

Wojw, I haven't been on for awhile. Sorry about that. Hi, and welcome. I have a daughter who has tourette. She is 22 now. You are fortunate to have gotton a diagnoses. No one knew anything about it, really. Are you on any meds to help with ticcing?

It is still hard at times, believe it or not, to find Drs. who know about TS. We had gone to Cleveland Clinic for diagnoses, and eventually, ended up in Philadelphia with a Dr. doing research.


05/21/2009 08:41 AM
Nevayda
 
Posts: 7675
Group Leader

Altho I don't have ts, I lived with it, worried over it, grieved over it, felt vindicated over it in regards to the schools, as my child also held in the worse tics, and people just didn't understand or believe, and all of this since 3 and a half years old, and she is now 22.

I agree, sometimes ts really sucks. At times, I felt it was the absolute worst.

As I learned more, I focased on her potential, and the tics just didn't matter anymore.

I wanted to mention to you that I read about a man who went swimming every morning before work. He said it helped control his tics. I put my daughter into swimming and kept her there during her entire growing up years. It does help.

I also wanted to ask if you are involved at all with a local or state tourette syndrome association.

Not only do they need mentors and heros for the younger kids coming up, they have a newsletter, seminars, speakers, and all kinds of things.

Anyone with ts or family dealing with ts are already family to one another. I found a local group immediately upon relocating, went to a meeting and felt totally at home.

Due to that connection, I was sent this site and am sending along to you. I hope it helps.

To whom to may concern,

>

> I am writing to notify you of a support blog for people with Tourettes Syndrome. I created this blog as a 27 year old woman who struggles with T.S. This disorder can be hard for some of us to talk about being on the Internet makes it easier. I am asking that you share the link below. I feel that this blog could be a benefit to many people. If you would like cards with the blog address please contact me. Thanks you in advance for your time!

>

> http://tourettesyndromechat.blogspot.com (be sure to use http:// not www)

>

>

> Melissa McIntire


05/21/2009 11:41 AM
Spydr666
Spydr666Posts: 5
New Member

I do not at this time take any meds. As a kid I was given ridilan(not sure on the spelling). Until high school it was believed that I was just hyper. Im 43 now. Over the course of my journey thru life I learned to adapt to and disguise my tics. I have learned TS has many degrees of severity. I actually have between mild and medium. For most people they dont know that I suffer (enjoy) TS. However anybody that spends time with me soon learns that I do. In public Im always on guard and either anticipate and disappear for a few minutes for the bad tics or I in some way disguise them by action. I have become quite adept at camoflouge. It took my last wife months to realize I was different(special).

The Dr. that finnaly diagnosed me wasnt even a medical Dr. He was a mental theripast. My family had thought(as had I) I had gone a little tilted. Lol some times I still wonder if I havent. Lol.

I dont wish to sound cold but I will not and do not feel sorry for myself or others with TS and I dont accept pity or sympathy from anyone. I also dont feel sorry for George Cloony because he is a good looking person. We are who we are. I do however feel sorry for people who dont understand and accept others for who they are. Or are willing to try.

If you or your daughter or anyone who reads this would like to talk I check my mail several times daily. I am always ready to listen and/or talk.


05/21/2009 01:55 PM
Nevayda
 
Posts: 7675
Group Leader

Medications have come a long way. At one time there was haldol. Now there are antipsycotics that have proven to help control tics. As you know, ts is a neurological disorder and can involve co-morbid diagnosis such as adhd, ocd, depression. All things that can be treated and make life better. Ritalin didn't work for us but dexastrat did.

Some people experience an increase in tics later on, when they were in remission or mild when younger. So this is just for you own info.

I don't feel sorry for you or for my daughter. It's wasted energy.

You were fortunate that your therapist was so sharp. At one point, m y child told me she was possessed by a demon. That is not what a mother wants to hear. She had been diagnosed but they couldn't get the meds right, until she was in 5th grade. I know she took teasing, abuse from peers in school, and then there were some teachers--------------------------I encouraged her to be her own advocate and to educate her classes. We did get help from the Pennsylvania tourette syndrome association to help educate school staff, which was mandatory, after she showed the Cleveland Clinic Neurologist the black mark on her chest that the first grade teacher put there. I advocated,and educated during the process, and she had to learn all she could to advocate for herself.

She is unable to work even with meds at this time, and is on disability. She lives on her own, has a boyfriend, and her own interests, doesn't drive, cannot handle her own money yet. Needs help with that. Is creative beyond measure, has a beautiful soft singing voice, gets overwhelemed easily, can swim good, ride a horse, is over weight, impulsive and no organizational skills. Took drum lessons and played in the band until they had a concert and she couldn't stop playing. A characteristic it seems. ( I met a 14 year old boy who could listen to any music and play it on the piano. "But, the thing is" he said," I can't stop playing the end of the song. I play it over and over and over. "Wink He gave me a laugh that evening at the ts group meeting, because he was so sincere and my daughter had the same experiences.

When my daughter was at Pittsburg Childrens. many years ago, the chief resident told me two things. Actually three. He said he had to return to his books because he didn't know anything. He said "Do you know people with ts can be like chameleons? I always remembered that. I decided it meant hiding who she was, masking symptoms and holding them in. It also meant she had the ability to blend in, so it became important who she hung out with. The third thing he said was "she is following her own blueprint." That thought gave me great comfort because there is a future.

I didn't know what the outcome would be. What I see is progress, taking a little longer than perhaps another to get to a certain point in development, but she gets there. It impresses me. She is smart, ts does interfere with some learning, it takes her longer to learn some things, she can't learn the traditional way. Could not learn to type in a classroom, but taught herself and was the fastest in the class. And has to do things her way!!!!!She is the one who knows best what she needs to do to get what she wants.

Yesterday, we went to Walmart to get venetion blinds for her trailer that she just moved into. Had a nice time shopping. Went home, she was overwhelmed, ticcing, and I forgot. Can you believe it? She said she couldn't even say she was overwhelmed. So I left, feeling angry, rejected, etc, etc, cooled down, called her and we talked. I told her straight to the point what I wanted to do. That most people clean their windows and put up blinds and curtains, and I just want us to be two women doing just that. And my feeling had been hurt. She apologized and explained what she had been going thru. So her outburst towards me was part of the ts. I'm the Mom and I should know better, but I'm retired now and have my own things to do and not enough time to do it. I did ask her when she was feeling stressed to just put both hands on her head and if she can't say "stress, stress", I will at least know to sit down and wait.

I'm so glad you posted. Sorry if this is too long, but I am so happy to meet anyone who has to deal with ts. We are family!!!!!!!!!


05/22/2009 04:20 PM
CherrieAngel
CherrieAngel  
Posts: 1268
Senior Member

You are such an awesome mom Smile I've said this many times but I'll say it again....your daughter is SO lucky to have you!!!!

I never took meds either, and like you Sean, these days most people aren't aware I have TS unless I tell them.

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