"Participate in a support group"

This is the "main" forum that contains new introductions and other topics. A place to talk about your experiences, thoughts and advice.

Moderator: gloria

lindainnd
Posts: 4
Joined: Wed Apr 13, 2016 9:48 pm
Location: Mandan, North Dakota

"Participate in a support group"

Post by lindainnd »

I live in a state where there is no other person, that I am unaware of have OT. I am very interested in a conference call support group (if there is anything like that). Please contact me ASAP.

Thank you
lindainnd
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: "Participate in a support group"

Post by gloria »

Welcome Linda: Why are you certain that there is no other person where you are? Were you just diagnosed with OT and have you asked your neurologist about someone near you that you can contact ? I'm sorry too that you just missed a large research & meeting in Omaha,Nebraska. You have not given your location however you say that you are very interested in a conference call support group. Just being a registered member here on the website is your OT support group that you can post your way of communication, ask questions, and report your OT life etc. with other OT people. I welcome you as a new OT friend and look forward to your postings, Gloria
lindainnd
Posts: 4
Joined: Wed Apr 13, 2016 9:48 pm
Location: Mandan, North Dakota

Re: "Participate in a support group"

Post by lindainnd »

Hi Gloria, it has been awhile since I posted anything on the forum. I live in Mandan, ND, I see my Neurologist twice a year. each visit I asked if anyone they can contact me. I also put the letter about September OT month still no contacts. I have had OT for about 15 to 16 yrs. I was dioginist with Epilepsy close to a year before the OT. I will be 63 this month, as hard as I keep the walking, floor exercises and for me, I need to stay away from sugars and caffeine also processed foods. I do not know what the long-term effects will be, but the condition seems to get worse. I live alone, no family support. Work and Friends are not in my life anymore. No one understands the OT condition unless they have it. I do read many posts in the forum which does remind me I am not alone. Thanks Gloria
iris Thompson
Posts: 3
Joined: Wed Apr 20, 2016 8:16 am

Re: "Participate in a support group"

Post by iris Thompson »

I live in North East Tennessee it took you months and $5,000.00 of test and different doctors before I got my diagnosis of orthostatic tremors. I had had it for ner of years but could walk off and it would stop. I called it shaking and did not mention it to a doctor until my daughter a nurse saw an episode and was getting worse. My family doctor had no clue so I began seeing doctors even a neurologist and gave him exact symptoms he did nother know and did not even mention OT. Five to six months later when I couldn't even stand or walk did he diagnose me with OT and then I went to a movement Disorder Center in Alabama and same diagnosis. Neurologist says not a progressive disorder but I have lived with it and know better! My husband can't even understand what it is and what happens!
Theresaann
Posts: 68
Joined: Sun Jun 24, 2018 6:43 pm

Re: "Participate in a support group"

Post by Theresaann »

Has anyone else noticed that the tremors are worse in stores, function halls, etc., that use fluorescent lighting??? Or is this my imagination?
Theresaann
Posts: 68
Joined: Sun Jun 24, 2018 6:43 pm

Re: "Participate in a support group"

Post by Theresaann »

Has anyone else noticed that the tremors are worse in stores, function halls, etc., that use fluorescent lighting??? Or is this my imagination?
Theresaann
Posts: 68
Joined: Sun Jun 24, 2018 6:43 pm

Re: "Participate in a support group"

Post by Theresaann »

I would really like to know the answer to what I posted on Wed Oct 24, 2018 5:48 pm:

Has anyone else noticed that the tremors are worse in stores, function halls, etc., that use fluorescent lighting??? Or is this my imagination?
Mupe51
Posts: 1
Joined: Sun Jul 14, 2019 12:08 pm

Re: "Participate in a support group"

Post by Mupe51 »

HolaTheresaann.
A la pregunta que hiciste si en las tiendas o salas de eventos te sientes peor...mi opinión es que no creo que se deba a la iluminación fluorescente...el problema es que necesitamos sujeción de algo o de alguien y sentarnos . y en esos sitios no suele haber una silla dispuesta para nosotros..a no ser que la llevemos nosotros...es cierto que estamos peor ,porque queremos llevar la misma vida que teniamos.. un saludo...
Theresaann
Posts: 68
Joined: Sun Jun 24, 2018 6:43 pm

Re: "Participate in a support group"

Post by Theresaann »

Hola to you too. But, No se habla Espanol.
Theresaann
Posts: 68
Joined: Sun Jun 24, 2018 6:43 pm

Re: "Participate in a support group"

Post by Theresaann »

Mupe51: Thank you for your comment. (I had a friend translate it for me.) For me, it isn't that I worry about a seat. I have a walker WITH a seat - a rollator - so it's "have seat, will travel" for me. I feel strongly that it is the fluorescent lighting because, in certain retail stores, my tremors increase greatly. I can't be the only one with this situation. By the way, I purchased my rollator from Amazon. It was half the price of purchasing it in a medical supply store or a pharmacy. The prices have a good range in Amazon. I had to assemble it, but it was just a case of putting the section with the handles into the section with the seat and wheels.
Orthostatictremor
Posts: 1
Joined: Sat Dec 21, 2019 11:15 am

Pole Walking

Post by Orthostatictremor »

I have had OT for many years and as most my walking distance is getting worse. I have started to use my walking poles and am amazed at how much further I can walk. Just want to share this with others. I am in Ontario Canada and do not know anyone with OT.

Dorothy
gardenlily
Posts: 18
Joined: Tue Apr 12, 2016 12:51 pm

Re: "Participate in a support group"

Post by gardenlily »

Hi Dorothy,

I also live in Ontario and don't know anyone else who suffers with OT. I was in the care of a neurologist in Toronto (who diagnosed me) but she has gone into private practice with something totally different. She referred me to a movement disorder clinic here in Kingston (near where I live) but the neurologist I saw there had never heard of OT and basically just prescribed another medication and absolutely no follow up. So very frustrating and disappointing. My family physician (actually a team of residents led by a doctor) offers no help and seemingly knows nothing about OT either.
So I rely heavily on my very supportive husband and my sister(when she's able to) to help me navigate through life with OT.
I have learned lots of coping strategies, some work, some don't; use a rollator outside, a cane, too, a kitchen stool, a shower seat,etc. but still get exhausted after trying to do/walk too much.
I hope that you are able to get medical treatment and a lot of good support from your family and friends.
Take care of yourself .
Where in Ontario are you living?
Rae
Shakeylegs
Posts: 7
Joined: Mon Jun 08, 2020 10:25 pm

Re: "Participate in a support group"

Post by Shakeylegs »

Add me to your little Ontario, Canada group Dorothy & Garden Lilly. I am a 58 year old male who has had OT for about a year now. I'm getting worse as the months go on. I live in Hamilton. I would love to make contact with either of you to discuss resources available to us in Ontario. Hope to hear from you
gardenlily
Posts: 18
Joined: Tue Apr 12, 2016 12:51 pm

Re: "Participate in a support group"

Post by gardenlily »

Hi,
Have you been in the care of a neurologist, or just a family doctor? My "family health team" here in Kingston basically has ignored my symptoms since I first tried discussing it with each and every resident I saw. I no longer am in a neurologist's care(private practice called her away).
I sincerely hope that you are getting treatment for OT symptoms that work for you.
Have you developed your own coping strategies?
Unfortunately the progression of OT symptoms makes everyday activities more and more difficult, so having support is really crucial to helping navigate through the constant changes.
I wish you well with this "new challenge ".
Let me know how you are getting through it.
Gardenlily
Shakeylegs
Posts: 7
Joined: Mon Jun 08, 2020 10:25 pm

Re: "Participate in a support group"

Post by Shakeylegs »

Went to my Family Doctor in 2019. OT was not mentioned at the time , as my hips were sore. He sent me for an ultrasound. The Ultrasound showed some minor fluid build up on one hip. As the months went on, the hips got better and the tremors got worse. I basically consulted "Dr Google "and came across the OT condition which checked all the boxes in my case. I was set to see the Family GP in April, but COVID changed it to a phone consult. Based on what he observed in 2019, and further input I gave him , my medical record now reads that I have OT. This was more for insurance purposes down the road in the event I can no longer do my job. Truthfully, I don't think he knew much about OT. I don't think there is any point in me seeing a Neurologist as I'm sure, when and if, I choose to take medication down the road, the Family GP could prescribe it . At this point , I am managing OK and I try to avoid situations where I have to stand for anything over a minute. I'm only 58 and I hope to work until age 65. What a strange condition this is ! Lucky us! :lol:
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