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

Moderator: gloria

#6048
Marianne,

Thank you for introducing yourself and for sharing the progression of your OT. You’re helping me understand what the prognosis can be like. I’m very interested in that, since I’m new.

My doctor today, in a message to me after I asked him about the prognosis, said that scooters or wheelchairs shouldn’t be necessary! He said perhaps only a portable stool might be necessary. I think this group knows more than he does.

Julia
#6049
Nice to hear from you Julia. I hope your debilitating disability doesn’t prevent you from doing the things you want to do. After many years of shying away from electric scooters I decided that if I wanted to travel and move around like others, the scooter was my only answer. And yes, I agree, most of the members of this forum know more than the doctors. Wishing you well!
Marianne
#6067
I’m Neil , 79 from Windsor Ont CANADA and have had this problem for 10 or more years and the best I get as far as a diagnosis here is I have a neorapathy as I can walk with an awkward gait but can’t stand in one place for longer than a minute, however I don’t have any pain but occasional tremors if I try to stand without supporting myself. I also find it worse in crowds, social events or waiting in any line. The doctors here have no idea what to give me or help so I ask here is there anyone here who can direct me to anyone who can help??
Thanks in advance Neil
#6068
I’m Neil , 79 from Windsor Ont CANADA and have had this problem for 10 or more years and the best I get as far as a diagnosis here is I have a neorapathy as I can walk with an awkward gait but can’t stand in one place for longer than a minute, however I don’t have any pain but occasional tremors if I try to stand without supporting myself. I also find it worse in crowds, social events or waiting in any line. The doctors here have no idea what to give me or help so I ask here is there anyone here who can direct me to anyone who can help??
Thanks in advance Neil
#6070
Hi, my name is Carol and I live in Maine. I saw a neurologist in 2015 and he thought o.t. But sent me for an EMG IN 2016 to confirm it. IN January my symptoms got worse so I had 8 weeks of physical therapy ( didn’t really help) and stared on neurotic. I thought it helped but I started getting rapid eye fluttering so I had to stop it. I walk 30 minutes every day and found walking sticks have been very helpful. One of the problems I have is that my head perspires profusely when I am in the middle of something like shopping. Does this mean I have reached my limit and does anyone else have this problem? I think I have had symptoms for a few yrs but pcp didn’t know what it was. Find it very difficult to explain to people. My physical therapist had never heard of it.i am 76 yrs old and a retired nurse.
#6071
Carol, I was diagnosed back in 1995 and it took a few doc visits before I got a diagnosis. I was going to neurologists who looked at me like I had 4 heads. Then finally I lucked out and found a neurologist who knew exactly what I was talking about. But that was many years ago and I would think that in today’s world most if not all neurologists would know of OT. You need to find a neurologist that specializes in movement disorders (e.g. PD, MS). This specialist will be able to give you a definitive diagnosis. Be well.
#6081
Hello, everyone. I was truly grateful to find this website.

I live in Massachusetts and was diagnosed two years ago by two different neurologists (in totally different neurologic practices) with this annoying condition. I have read everything I could on just about every website, but getting information from REAL people ("not actors" LOL!) is priceless.

My neurologist stated recently in April 2018 (Lahey Clinic, Burlington, MA) that, since it's a rare condition, there isn't much research regarding it. She stated that the latest info and advice was to use a "Rollator" (walker with a seat) which I had already begun using. I really can't do without it. I used a cane without too much confidence (I'm an RN) and moved on to the rollator. If the distance to a destination (store, church, restaurant) is short for me, I stumble along with the cane. Otherwise, I use the rollator. I think the rollator is easier because the condition involves BOTH legs, not just one. Now that my hands and arms have started to tremor periodically (ONLY when standing), the rollator is a life-saver. AND, the seat is priceless. (If a patient is sent to a local medical supply company, I suggest that they do some research on pricing. I found the same brands and quality on Amazon, at about one third the price of a medical supply company, or even a pharmacy.)

I consider myself very lucky because, so far, I don't have any leg pain. But it is a life-changer because now I have to do everything, just about, sitting down. Small price to pay I guess. (I have even baked bread sitting down. It just takes some adjustment.) At least there is relief for me in sitting down.

*** However, has anyone with the condition been prescribed a medication that truly relieves at least some of the tremor????? I hesitate to try any of them since the side effects are daunting, particularly the side effect of "tremors". WHY would I take a medication that could possibly cause what I already have???? My neurologist admitted that most of the meds don't work any way. But there must be at least one that relieves the tremors.

Thanks for being there!!

Theresaann
#6085
Hello everyone. I live in Perth Western Australia and am 68 years old . I have only been diagnosed recently but have had OT for at least six years. I have tried at least three different medications but find they just make me sleep and don’t do much otherwise. I not only have tremors when standing still but also find it is becoming more difficult to walk distances. Life just becomes a daily struggle but I am trying to stay positive ,keep my independence and my sense of humour.
#6086
Just a re-introduction. My name is Marianne and was diagnosed with ET in 1996. I had to prematurely retire from my job and now am comfortably a “baby boomer” retiree. I’ve never had an opportunity to attend any of your meetings in Nebraska but always follow up on what went on. After having 2 knee replacements and spinal surgery, you can imagine that my ET has not responded well to these changes. Still getting along without the aid of walkers or canes at home but need to use my scooter whenever I am out and about. Standing time is bad on some days and a little better on bad days but always under 60 seconds. I am now in a position where I have to select another neurologist after working with my current doctor since 1996. I will probably choose another doctor in the group who is also a specialist in movement disorders and perhaps hope she will have some different ideas on treatment. I wish you all well.
#6094
Hi, my family call me fred, but my real name is Bill. I'm nearly 96, and started the OT journey in Oct 2015.

My Son, has joined me to this forum due to the frustration of not finding others with OT, and the trouble I've had explaining the symptoms to others when having other related/non-related medical events happen in my life.

The last time I drove a car was the day my legs went wobbly, and I found myself unsteady when at a shopping centre near home. That day began a series of explorations into what was the problem. With specialists introduced by my local Doctor (GP),
- we explored Ears, note throat thinking there might have been a head dizziness situation, ruled that out.
- then it was exploration into vertigo, another potential reason for losing balance, or in my case, more a 'fear of losing balance'.
- during the 12 - 18 months that followed, I became dependent on walking on a stick.
- this progressed to a dependency on using a wheelie walker to get around the house

I feared I was suffering Parkinsons, because coincidentally at the time, my voice began to weaken and crakle, and the two symptoms of wobbly legs and the voice, mixed with my close relationship of many mates who had fallen to Parkinsons, prompted me to do too much Googling into what might be. My Son is writing this and probably coloring the thoughts here a little, because fair to say, I became more anxious and had convinced my self that was the path I was heading: Parkinsons.

- But then we got a chance to visit a neurologist specialist, and his technician and did a heap of tests. We finally had a definition of the problem. I had O.T. And the same symptom of wobbly legs, was OT and not Parkinsons because of the rate of the tremor.
- I still felt I was being conned. It took another three visits of pretty heavy argument and convincing, to get me to comprehend the difference between Parkinsons and OT.

Move forward to 6 months ago, East 2018, and my mobility had worsened, and I've become dependent on a terrific electric chair: PRIDE GoChair. It has given me new found freedom to get from bed to bathroom, to kitchen or TV or to my pianos or computer, to see what's going on.

Then in recent weeks, I caught pneumonia, and attended private hospital followed by a three week stay in Rahabilitation. My energy levels dropped, and I felt new symptoms of OT were getting to me.

So we visited the original Neurologist to once and for all seek clarification of what other symptoms come from OT. And he stated that the tremor in the legs is a solitary symptom and cause of OT as we all define it, and there are no other related symptoms. Therefore, the new found weakness must be something else.

But I've spent the last couple of years, believing there might be other factors that will impede me. And due to privacy laws and so forth, I've been deprived of discovering if there are other people around the world with OT and what their path has been.

So with OT comes anxiety, and with anxiety comes new medical matters to deal with, so there is a snowball effect here, particularly if there is a level of anxiety in life to begin with. SO it becomes a challenge to separate the cause/effect of things and for the GP to provide the right drugs to ensure
- a good nights sleep
- to enable a next day ability to get up and do any sort of physio (at 95!)
- and therefore maintain a healthy diet and appetite.

AS for drugs for OT, there were three available in Australia. The first one knocked my socks off in a couple of days and was immediately stopped. Then the 2nd was to try Gabapentin for 3 months. This started at 1 then 2 then 3 daily, and then to 6 daily. I tried it for 5 months with no impact. Others might say that continued use of it might have extended the combatting of the OT - who knows. There was a third experimental drug, but with none of the priors working, that was skipped.

Doing a search for "Melbourne" on this forum, and with respect, skipping those in Melbourne Florida, and focusing on those in Melbourne Australia, I'd love the chance to compare notes on OT in case there are doctors, services or people who can help, that are close to my home.

Thankyou for sharing my journey in OT.

Cheers

"Fred"
By Susie
#6095
Hi Fred (and Son),
I received your message and wonderful to hear from someone who understands OT and who is close by, I am in Mornington. I have read your post and so sorry to hear how much you are struggling with OT at the moment but I have to say it's a bugger of a thing to have with no medication that really helps so at 96 years old and getting around on your scooter and actively researching you are still putting up a good fight!
It's nearly a year since I posted in this forum and I have got a fair bit worse since then. I have Parkinson's as well as OT and was taking Gabapentin for the OT and then this year started Levodopa for the Parkinson's for the first time and that was a godsend but I still find life a bit tough. I live alone and I still work and it seems everything revolves around getting myself to work, looking after the house and garden and any spare time I have to spend it laying on the bed resting! Not much of a life at the moment. But this year I have started seeing a new Neurologist, one I consider to be the best at Cabrini and things are looking up, he is focusing on improving my quality of life and I am considering Deep Brain Stimulation.
And I have some good news for you, and for anyone else in Victoria. There is an OT Conference being held next year on the 8th and 9th April in Melbourne. It's being organised by the "Primary Orthostatic Tremor" Facebook group who have been a marvellous support to me. I will be attending and hope you can too.
I will send you a message with my email address and we can catch up in more detail and meet if you like. It really does help to have group support with this rare and misunderstood "invisible" disease.
Susie
By Waltraud Behrend
#6097
Susie wrote: Tue Aug 07, 2018 12:34 am Hi Fred (and Son),
I received your message and wonderful to hear from someone who understands OT and who is close by, I am in Mornington. I have read your post and so sorry to hear how much you are struggling with OT at the moment but I have to say it's a bugger of a thing to have with no medication that really helps so at 96 years old and getting around on your scooter and actively researching you are still putting up a good fight!
It's nearly a year since I posted in this forum and I have got a fair bit worse since then. I have Parkinson's as well as OT and was taking Gabapentin for the OT and then this year started Levodopa for the Parkinson's for the first time and that was a godsend but I still find life a bit tough. I live alone and I still work and it seems everything revolves around getting myself to work, looking after the house and garden and any spare time I have to spend it laying on the bed resting! Not much of a life at the moment. But this year I have started seeing a new Neurologist, one I consider to be the best at Cabrini and things are looking up, he is focusing on improving my quality of life and I am considering Deep Brain Stimulation.
And I have some good news for you, and for anyone else in Victoria. There is an OT Conference being held next year on the 8th and 9th April in Melbourne. It's being organised by the "Primary Orthostatic Tremor" Facebook group who have been a marvellous support to me. I will be attending and hope you can too.
I will send you a message with my email address and we can catch up in more detail and meet if you like. It really does help to have group support with this rare and misunderstood "invisible" disease.
Susie
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