How is everyone?

[MikeS]

Hi Everyone
It was 6 years ago this week I was diagnosed and started this thread .
Since then I have been to 2 meetings in USA and spoken to Gloria on many occasions on Skype . I have also had a few other health issues , open heart surgery and more recently the kidney failure that stopped me going to the last Omaha meeting .So I am delighted that I have booked my flights for the meeting in September.I have now reached the ripe old age of 65 (today actually) and would still encourage everyone to try and do as much as you can by using the systems.I still travel on a regular basis eg September itinarry so far is 8th to UK, from there I fly to Greece for a week's holiday, then on 21st I have wedding in UK 22nd I fly to Madrid then 23rd to Omaha. 27th I go to LA then drive to Las Vegas then on 7th October back to Madrid . Some of this will be done with family but the whole USA one will be on my own with my trusty wheelchair .By using all the systems in place at airports for disabled passangers the whole process is not unpleasant to be honest .You dont' have to stand in line for anything, you go to the front of every line, people are nice to you because you are 'special' My point is that if you have OT and not OT plus ,by that I mean lots of other symptons ,you must try and not let it rule your life .Today I spent time with 2 very old friends, one has Parkinsons and the other friend's brother has Motor Neurons Disease and I have to say that in comparison I felt that my 'Teddy Bear' legs, as bad as it is to me, is so managable .
Vera, I am so pleased you found us. My own personal opinion is that we all have lots of different symptoms and 'things' , I can't walk properly in the dark , I can't do the drunk test ,walking 1 leg in front of other.....I also have things that cure me temporarily - after being in hospital and on oxygen I can stand without tremor....
Anyway enough of my waffle I look forward to seeing all of you that are coming to Omaha in September.
Keep Smiling
Mike

[Foster]

Hi Mike, hope you had the Best Birthday & many more to come, I am new to the group, but was diagnosed 6 yrs ago as well. I have so enjoyed reading your many posts, & appreciate your honesty, humor & wisdom. Enjoy all your jetting the world trips, safe travels.
Who ever said we OT'ers don't get out much....
Take Care Shirley

[admin]

Happy Birthday Mike!!

[beth]

Hope You Had a Great Birthday Mike!!

[gloria]

Yes, another Happy Birthday Mike ! You are a very special person and have been helping the OT cause in so many ways from the time you were diagnosed. Your dedication is outstanding! See you in Omaha, Gloria

[Chris]

Happy Birthday Mike!! So happy to hear that you will be coming to Omaha this time. I was looking forward to meeting you last time we were there. I have been diagnosed for 10 years now and have been getting on with my life and travelling as much as possible. My wheelchair really does make it a lot easier. My husband and I will be driving to Omaha from British Columbia again this time. An interesting road trip as there is lots to see along the way.
Look forward to seeing you and everyone else plus taking part in the study.
All the best
Chris

[gloria]

Personally I'm getting very anxious about our trip to Omaha. Chris I can still see your husband Tim and Jeff running around taking pictures of all . My experience of being surrounded with OT friends has always been unforgettable events. Hard to put in words because emotionally I feel free of the challenges of life with OT. There I will be sitting next to people that I do not have to explain why my life is different ........." why I can't reach-up when standing and give someone a hug and a kiss or stop and answer a question !" There we will just go at a different flow, not feeling socially uncomfortable. Long after such meetings I feel strengthen and my outlook on life is so much better. Hope to see many of you there, Gloria

[Chris]

I agree Gloria!! It indeed was a wonderful experience to be around new friends who really get what my life is like. Looking forward to seeing you and everyone else. Chris

[snickers]

Hello again to all!
Haven't been here for a while and the website seems to be getting busier!
O.T continues to be a nuisance for me, not a disease. (Keep telling myself!)
I find myself to be seeking out chairs,places to sit more often than I used to. I seem to be leaning more heavily onto the kitchen counters when preparing foods than a year ago.
Two years ago I started eating a plant based diet(Starch Solution) and have given up meat ,dairy, fish ,fat, processed food and alcohol and coffee.
I do not eat anything that creates inflammation in this body. .
So, I have lost 60 lbs, do not have arthritic symptoms anymore,or high blood pressure or high cholesterol and am off all meds,however I notice no improvement in OT symptoms.
In fact I think it may be progressing more.
I walk everyday( I bike ride in summer) and snow shoe in winter.
I bought a cane chair and use it now when attending public functions that may not have seating(farmers market) or outdoor concerts.
I have no pain or nausea as I read with other folks.
An idea for a survey might be amalgam,I still have it in my teeth.how many of us do I wonder?
I am going to contact my dentist to see about removal. What are others thoughts?
Take care to all

~SV~

[Hattie12]

Thanks Mike. I was Ida goosed one month ago. Symptoms came out of no where four months. Fortunate for me I had taken early retirement as Nurse Practioner to enjoy retirement. First my neurologist ordered six weeks of physical therapy to restore bance and unsteady gait. I flunked that badly. Went back and he ordered blood tests for every disease or disorder that would cause symptoms. Those were negative. Meanwhile I had fallen three times at home. Then went back for spinal tap to rule out multiple sclerosis. That was negative. He did a lot research. When I went back , he said I have OT , which I have heard of. Fortunately I can walk with cane so far. Mornings are the worst for me. Around noon it seems to ease until. My endurance is very poor. Has anyone else experienced this ? Most disappointed that I just cancelled my trip to Martha's Vineyard to visit my daughter. I just could handle the excursion. I feel very alone with. I worry all the time this will worsen. Only drive about twenty minutes from home to do errands. I have my groceries delivered. I'm not medication either. Is there some that might help ? My DR. Suggested Clonopin , but have not tried it yet. Looking forward to hearing from you. Patricia Milford , CT

[Betty]

Hello all !

It has been quite a while since I have posted anything on the forum. I have missed "talking" to everyone and reading the experiences of others.

Last year was a difficult year; my husband had some major health issues and the year seemed to be gone and I had not been on the forum.

He is better now and we are planning to attend the meeting in Omaha. I am looking forward to being there, seeing long-time friends and meeting new ones. I THINK I am in the study. Received my phone call this a.m. and was told I will receive at least one more phone call, perhaps two.

As the excitement builds, I do feel a bit anxious, as you mentioned, Gloria; but feel I will be okay once there. However, any real emotion does make my tremors much worse. As I said years ago,
it is like the "fight/flight" syndrome. The adrenal glands seem to go full force; it doesn't matter if the emotion I am feeling is good, bad, happy or sad ~ it's all the same. This is something I may mention while in Omaha.

My tremors are getting worse. Each year I can see a big difference from the year before; but I continue to do what I can....I am not a quitter! Perhaps "stubborn" would be a good word to use.

Looking forward to seeing all those attending the meeting next month, and to you Mike, a belated HAPPY BIRTHDAY! I had one in July as well.

Betty

[gloria]

Dear Betty: I just opened up the website and what a wonderful sight to see your posting that Paul is doing well and you be going to Omaha. I'm so thrilled to hear the news!!!!!! You certainly have been missed on the forum. You were one of the first persons to join the website and have contributed 324 posts on the forum!!!!! You are a very special friend and one that I have had pleasure to meet at different times thru the years . One occasion was our FIRST OT meeting in Rochester, Minn. Well, you made my day and can't wait to see you again in Omaha with all our other OT friends. You are right we must try to keep those adrenal glands in check, but I know that once we are surrouned by other OT people there is a feeling of comfort and understanding that will overcome.

Gloria

[Betty]

Dear Gloria,

How dear of you to respond to my post, and thank you for your kind words.

Gloria, you were the FIRST person I met with OT; I'm sure you remember our meeting here in FL many years ago. You were, and continue to be, such an inspiration to me and everyone who has found your website. It was wonderful to find others who have OT and to hear their stories.

Yes! I remember well our FIRST OT meeting in Rochester, and to be among the first ones to hear from a neurologist interested in OT. Peggy set up that meeting and has done a fantastic job organizing the other meetings. I was unable to attend the first one in Omaha, but we WILL be there for this one. I am very excited!

See you in Omaha!

Betty

[Angela]

Hi everyone, I have only posted maybe a couple of time, as I have no good advice for anyone. Sounds like were all just doing the best we can. I do have a question, recently I have had tightening and harden of my calf muscles. Wakes me me up at night aching. Was wondering if anyone else has had that, and is that a part of the disease? I've had OT for about 7 years now, and am on no meds. tried a few and didn't help and didn't like side effects of them. Tks!!!

[Angela]

Hi betty, was reading your recent post and was happy to hear you say that it doesn't matter what the emotions is, happy, excited,sad, angry, worried, whatever it makes my tremors worse! I guess that's why anti-depressants help some people. They keep your emotions on a even keel!! Tks for post, and enjoy Omaha!!