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.
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
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.
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
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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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
~Michelle
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
Welcome to WEGO Health and the Care4Dystonia forum!
It looks like you've been thru the wringer. There are others here who have had similar circumstances.
I know there are many people who read your story and are going to learn from you and feel they are no longer alone in their struggle.
Thank you for joining us and I hope to read more from you!
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