How is everyone?

[ALC]

Hi all,

Since my post was the last before Gloria's I just want to say that I hope my comments were "on-topic". It does not appear that others on the site also have jaw and facial tremors (thankfully). I have both - diagnosed by a neurologist and ENT at Yale University as directly related to my OT. From the home page, the link to Dr. Bain's powerpoint slides lists jaw and facial tremors as a clinical manifestation of OT. These tremors often lead to dizziness especially when I am trying to stand, which is why I mentioned it.

It's kind of hard for me to tell whether something like vertigo/dizziness is or is not appropriate to share (I think it is and I appreciate these posts). There may be OT related tremors that can lead to symptoms we might not otherwise link to OT. I don't think we are in danger of trying to diagnose one another. We would often not know the questions to ask at our neuro visits if not for the feedback from the active posters here, to whom I am very grateful.

Amy

[Rose]

Gloria,

After your reply, I wonder if I have been misdiagnosed with OT since my tremors are not constant and my legs and ankles stiff, etc. as you state. It is extremely hard to walk during a tremor but I do not think my muscles harden. My tremors are stopped by brisk walking. Anxiety and being tired worsens them and at the end of a walk or bike ride, the tremors are worse. I have not had an EMG. The neurologist said he had seen OT in one other person and thought I had it. My tremors are less frequent since being on a low dose of Gabapentin. However, I suppose I could still have a wrong diagnosis. I do not see the doctor again until June but will bring up some of these questions when I return.

Thanks for your website and your help for so many people.

Rose

[gloria]

Rose:
No, I can’t say you were misdiagnosed . You were lucky to find a neurologist who diagnosed you with the symptoms that you presented to him and OT can be diagnosed by manual examination. The concern started when you said your tremors are “occasional” which is not typical as you have found out from the responses. Chris’s response on page 12 was very good and she picked up on the same word “occasional” that you described. However, without belaboring the subject I think because you are a “newbie” with OT perhaps your OT has manifest itself with a little variation or your understanding of your observations will show itself differently as time goes on. I’m certain when you visit your neurologist in June this will be one of your questions to him and he can put it into prospective for you. Please continue to post , participating on the Forum is so important because with everyone’s input on the website we have established a good profile of recognizing our disorder and how it has changed the quality of our lives. Take care, Gloria

[PW2]

Hi Mike -- Thank you for the "rant" which seemed very familiar. Every little task is a challenge. I especially connected with the "every day it starts all over again" part. Each morning before I actually get up, I think for a moment about how it used to be and every day, it's the same, shaky start. I've actually stopped trying to explain it to people and just say "I have to sit." I find that working makes me push myself to accomplish daily goals more than I do on the weekends, when I am home. So I plan to work as long as I can. I use a wheelchair when I visit a museum but am still managing most of my shopping and errands. I find the busier I am, the less depressing it is. It's good to know that there are folks like you who do really understand. All my best, Pat

[Lily, Toronto Canada]

See my post re Cost of Gabapentin , which partially answers this also. Lily

[Joan]

Hi Everyone,
I have been missing in action for awhile. We went to Mexico in an R.V. for the winter and stayed on the beach in a quaint R.V. Park on the ocean. Always interesting camping with OT. I dragged my little folding chair with me everywhere, even if I was just going to the neighbours to borrow a cup of sugar! Seems almost everyone wants to stop and talk to you if you don't have a place to sit. Right? We would get up at 6 A.M. with the sunrise, have one coffee and then a wonderful 1/2 hour walk. I didn't need my chair as no one else was up. In the afternoons we walked an hour on a long deserted beach. I never took my chair and if I met someone to visit I would just plunk down in the sand. Made for a wet bottom and sand in many interesting places but no one cared. We walked with a couple and he has Parkinson's. Guess what, he felt sorry for me and tried to think of every medicine going that would help me. God bless him, he can barely walk. BUT we walked in the warm surf and felt the sun on our backs and chatted all the way and laughed a lot. We also swam a lot, there are a lot of things I can do and I am so grateful. I just do not dwell on the negative anymore. We'll go back to Mexico next winter. I noticed that I was very relaxed and when I was my OT was improved. Wish I could do that at home. I just finished vacuaming the rug with one of those hand held vacuams, pretty good suction. I just sit on the floor and move around on my bottom. I figure it's good for my figure and it sure beats shaking like a leaf with a huge vacuam. I also was given a lightweight Swiffer vacuam that has no cord ( I keep it plugged into the wall to charge ) It's kinda handy as it's light and cleans my hardwood. I need to I drop to the floor with that too, but at least it's light and easy to manouver.
Now I just need to figure out how to garden, I always tip over when I'm pruning and when I'm weeding it's hard to move from one spot to another. Chris, I think you have that figured out don't you?
Okay, that''s enough from me and I really miss you Mike.
Joan

[Chris]

Hi Joan
Great to hear from you.....I was wondering where you were. Your winter sounds wonderful.....much better than being in British Columbia. We thought it would never end. We are definitely heading south next year for awhile too. I am glad to hear that you have figured out how to deal with your tremor when on holiday.
When I garden I use a small yard cart with 4 wheels and a little seat. It also has a tool holder which is very handy. I pull it around everywhere I go in the garden and now I have organized my gardens so I can reach most anything. If not my hubby does it for me. I bought it at Costco a few years ago before I actually needed it because I thought it was a neat idea. Lee Valley sells them but they are quite pricey there. I too find housework quite challenging and my husband does all the vacuuming but I can do it for a short time. We have a built in system so no heavy machines to lug around at least. When I wash the floors I use an old computer chair which I keep handy and just wheel around as I mop the floors. It works really well and saves my legs a bit.
I will phone you sometime and we can chat.....I must go now as our company is arriving
Stay well everyone.
Chris

[sequimbea]

I'm not feeling like my legs are going to collapse on me if I don't find some where to sit down RIGHT NOW! And I haven't had to sit on the floor or sidewalk since I was diagnosed. However, I have some side effects I don't really like....sleepiness, frequent dreams, and increased tremor of my hands and voice. I'm going to Seattle to see my neurologist Monday and maybe he will suggest an adjustment in my meds, or when I take them. I am increasing my walking, which I think helps, but also want to ask the doctor about other exercises. Will try to remember to let you know what he says! I tell people I have a rare neurological disease which affects my balance.
Bea

[jolarson]

Please let us know what your doctor says to you. Even though I am the only case of OT that my doctors have, I do think they don't know how to treat it. All they do is look it up on the computer to find out about the disease and what other doctors are prescribing...................But on another note and one that I want to throw out to the board is....are any of your friends or family now DEFINING you as a person with this problem? I only have a couple that do that, meaning always talking about my "problem" and not other current events that are taking place in my life or theirs. I am older and have had an extremely interesting full life and then to now being DEFINED by my "problem" is annoying and one I am trying to gently avoid. I am interested to hear if any of you experience this and how you handle it.

[MikeS]

Hi everyone out there in teddy bear legs world I know I havent posted for a long time but to be honest Ive not really had much to report till now.
I am writing this from a hospital bed in sunny Spain .Last Friday the 7th I had a heart attack and and am waiting to be transferred to another clinic to have a triple by pass....but thats not the news that was just to get your attention....I dont know why or how but over the last few days I have been able to stand for a really long time ,well 5min (usually max 30 seconds) at least without feeling the panic to sit now! I dont know if it something in the drugs im being given ,mostly blood thinners or the crap food they serve here (do they take a special course on how to murder perfectly good food?)Another thing that has happened nothing to do with OT but my vision has changed my sighted glasses now dont work and I can read or see at distance without them.I will tell my neuroligist about this but wondered if anyone else had experienced a change to their OT after having something else happen........I just had a thought do you think I might be turning into one of them super hero things like they do on the tv ..you know the ones that have a big shock to system then get super powers......I can be TEDDYBEAR LEGSMAN.......Peggy will you you knit me a costume?

Keep Smiling
Mike :)

[patty]

Hi Mike, lovely to hear from you again, was just thinking the other day that we had not heard from you in a while. I'm sorry to hear about the old ticker, and not the nicest of places to be in sunny Spain, but I'm sure, with your sense of humour, you will be fine, what a treat for those lovely nurses.

It certainly is very curious about the changes in sight and standing, as you say maybe its the meds, it must be nice to feel normal again even if it is in hospital, this complaint of ours always seems to keep throwing up all sorts of senarios, I have become friends with a lady who has OT and she too had triple heart surgery over ten years ago and is still going strong in her eighties.

I am sure we will all be thinking of you Mike, I'll leave you now to have that delicious lunch!!!

My very best wishes, Patty

[Marianne]

Hello Mike! Great to hear you back on the forum. A few of us ladies were with Gloria the other day and I asked about you since none of us had seen any postings from you. Not happy to hear about your illness and impending surgery, but I know that with your outlook everything will turn out fine and you will be on the road to a quick recovery.

It is strange though that you have had changes to your sight and standing time over this period. Makes me think it may be due to all of the meds you are being given in the hospital. Well I hope that these changes will not pass for you. For all of us with OT, five minutes of standing is better than 30 seconds. I wish you good luck with your surgery and better food. Keep us up to date on your recovery and of course, always keep smiling :)

Kaylie

[admin]

Only Mike could write.... I've had a heart attack, waiting for a triple bypass..... but that's not the real news!

best wishes on a speedy recovery

Beth and Jeff

[gardenwoman]

hello Mike, sorry to hear of your troubles. I thought I would ask if you have Antiphospholipid Sydrome (APLS) also known as Hughes Syndrome (after professor Graham Hughes at St Thomas' hospital in London)? This can have many symptoms tremor and movement disorders being just a couple of them. Since it is a blood clotting disorder, it can improve with blood thinner treatment, Heparin/Aspirin/Warfarin. I am not suggesting that all of us who have OT have this disorder, just mentioning it because of your possible improvement on the Heparin. Neither am I suggesting for a moment that those with OT start taking any blood thinners without medical advice.

[Lake of the Woods]

Hi Mike,
I did email you privately but then went on to read more about what is happening to you and the nice replies. Yes, I will start knitting - the question is "what kind of costume would suit you....?" - send your measurements - no, on second thought, forget that!

In Canada the hospital staff also takes that course on "how to murder hospital food" - the reason it is so bad is that they just want you to have a short stay, also, if people are complaining about the food they are not complaining about their illness so they can cut back on staff - no one is complaining so you don't need as many nurses etc...there is a plan!

Good luck to you from all your OT friends,

Peggy