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Thread: Hi everyone

  1. #1

    Default Hi everyone

    hi there, this is my first time doing this and i actually just started looking into tourettes syndrome in the last month or so. I am currently dating a guy who may have tourettes. It may just be a tic but it is only motor and it seems very mild. He had beed to a few doctors and had some bad expereinces and decided to just give up. Now that i'm in his life i want to know as much as i can and how i can help. I thought this might be a great start. Talking to people who are familiar with this disorder and who might be able to help. I am canadian, however, my boyfriend is from Portugal and resources don't seem as available. I know that he has tried some medication but he just felt ill and stopped taking them. I was hopeing that there might be some natural therapies or nutritional remedies tha might help. Any suggestions

  2. #2

    Default Hi everyone

    Hi Wendy,

    Welcome to the TSFC forum, we are happy to meet you.

    We have a section called What is Tourette Syndrome which provides information about the criteria for TS which is helpful to read over.

    Please encourage your boyfriend not to give up on seeking answers to his medical health. In today's busy and overcrowded hospitals and doctor's offices, we must be our own greatest advocates in the health care system!

    You could contact the TSFC and find out if there are doctors with knowledge of TS in your area.

    You must be commended for finding out information on TS and by encouraging your boyfriend not to give up on finding answers and encourage him to visit our forum. You are really making a difference in his life, he is lucky to have you.

    Let us know how we can help.

  3. #3
    Join Date
    Mar 2005
    Location
    Ontario
    Posts
    962

    Default Hi everyone

    Wendy:

    Welcome to the TSFC forum, I am glad you found us and am sure you will find support among our members.

    Stephanie provided some sound direction and again I think it is wonderful that you would approach this the way you have to provide some support to your boy friend.

    You may find the Tic Parade section valuable to find answers about motor tics and experiences others have had.

    Have you found a local TS Chapter in your area?

    Meeting others with TS can help.

    Is your boy friend still in Portugal? It can be helpful to request a specialist that has a special interest in TS or TS+ to provide a clearer direction for treatment and confirm the diagnosis.

    Your boy friend should discuss nutrition with a specialist to see if modifying his diet would improve his health. You will find others here that have posted topics on diet that could be discussed with a physician.

    The Adult section and treatment options sections are helpful. You have a search function above in blue that will list all the posts for specific key words or topics.

    If you need any assistance navigating the forum please let us know.

    Keep us posted on your progress and findings and please join in on other topics or make your own.

    Take care and be assured you are not alone in your quest.
    PJK

  4. #4

    Default Hi everyone

    Wow, it was great to hear from some of you so quickly. It is so good to know that there are people out there who can help. I am very very interested in trying to help my boyfriend with tourettes without using drugs. He has tried them before and like many of you have said, the effets are often worse then the tics. I read some of your comments on nutrition and how removing meat from your diet has helped...i wonder why? I myself am not a very big meat eater. However, if any of you know the portuguese culture is often based around food and very often meat. But i truly believe that with changing his diet and even meditaition and relaxation might truly help him.

    This has been such a huge concern for me. To be honest i have a hard time accepting it. I am usually very supportive and sensitive about it but i get frustrated and then i feel bad cause i know he senses it and then i feel like a bitch cause i know it's not his fault and he can't do much to control it. But i think the worse part for me is accepting it completely. Sometimes i think i'm okay with it but then i am embarressed to introduce him to friends or family. Plus i'm afraid that it might get worse and time goes by. Can it get worse? I mean he's 31 does it get worse with time. I'm mostly afraid of having children, i know that it's hereditary and i don't know if i could handle that. I'm feeling really scared and emotional about it and i like him very much but it does bother me and i don't know if i can completely accept it and sometimes i want to break up with him because of it and it makes me feel like crap.
    I keep looking for answers, hopeing that there is something that will help him, something that will fix it. I am holding on to this belief and maybe i'm hopeing it's going to change and he will get better. But i'm not accepting it and i don't know if i can.
    Thanks everyone for being part of such a wonderful foundation. It helps so much to know that there are people who feel the same way.

  5. #5

    Default Hi everyone

    Hi Wendy,

    Hearing that your loved one might have something medically wrong with them is a time that is stressful and you need to give yourself a period of adjustment.

    By finding out information and seeking help for TS is being a very supportive person!

    It is ok to feel uneasy about TS because you need to find out as much information as you can so that all of your questions are answered. We have many postings on the forum that discusses a variety of topics so feel free to post to any topic or start a new one.

    Tics naturally come and go but generally in adulthood they do not get worse.

    TS is hereditary and a person has a 50% chance of passing it on to their children. My son is 9 years old and has TS and he is a wonderful child and I would not trade him for all the "normal" kids in the world.

    Please give yourself some time to adjust and let us know how we can help.

  6. #6
    Join Date
    Mar 2005
    Location
    Ontario
    Posts
    962

    Default Hi everyone

    Wendy

    The emotions you are feeling are like those that others experience when a family member is diagnosed sometimes.

    Stephanie is right, you must learn as much as possible about TS and this helps you manage through it.

    In our case since I am more comfortable about it and have a good idea how to support and help my son it just is not a big deal anymore.

    In the teen section you will find posts from others concerned about having children and they would probably help you better understand.

    I would not trade my son for anything and I made a choice to have him in a bad situation.
    You are very fortunate that you both care about each other and you just need to build on that together and see what happens.

    TS can not be fixed but it can be managed. You are right about meditation, yoga, redirecting can be a possibility for some to help cope through difficult tics or bad periods.

    You should find the triggers that cause the worse periods and reduce that experience or stress.
    If you are upset with yourself or with him he will pick up on that and his tics can become worse for a short time in response to the stress.

    I am sure he would not want you to feel bad about yourself and he does not want you to feel bad about your relationship or him.

    Give it time and learn and hopefully in the process he can locate a physician that can confirm the diagnosis and provide some treatment options.

    Some people with TS take medication for it while others do not. Everyone responds differently and each case is also individual so comparing experiences or side effects really does not work. It tends to be a trial and error process that has to be revised from time to time or adjusted.

    Keep us posted and do some reading. Use the search function above for topics you have questions about and then read the other posts provided. You can always add your own response or ask questions directed to the topic and members will respond.
    PJK

  7. #7
    Join Date
    Jun 2005
    Location
    St. John's NL
    Posts
    1,147

    Default Hi everyone

    Hi Wendy

    Glad you found us. You've been given great advise by Steph and PJK. Hope to see you online again.
    Janet, mom of 4

    TSFC Homepage


    "Intelligence is always increasing; accommodation allows your intelligence to do what it has always done." Cassie Green, Washington College

  8. #8

    Default Hi everyone

    Just had to say welcome :D !!
    Alley

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