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

Moderator: gloria

By jolarson
Hi all - Mike, you asked about where I live and realized I am on the members list twice, once with my location and one without. I've tried to update and hope it comes out correct. Just in case I goofed up somewhat I live in Orange County, Ca. USA. I would love to meet with anyone who lives in Southern California. I am one who loves to drive and I will go anywhere just to chat and compare notes with those who are having the same issues that we all have. Since driving to my doctors at UCLA takes almost 2 hours from where I live I am all around Southern California fairly frequently. I have even put my email address on record in case anyone wants to personal email me. To anyone who lives in this area I would recommend UCLA neurology Department. I said before I am the only patient ever there with this disease and I have been pushing them to do more research or even a paper on POT. Maybe if more of us with this impairment go to this top research center in the USA will give them more interest to look into this rare subject more. The movement disorder department is huge with so many different diseases. They get all of their information about POT off the internet and from research papers. They were the ones who gave me this website. Mike, your thoughts about the chances of winning the lottery are better than getting POT which really hit home and put things in perspective. No wonder it is impossible to explain our difficulties to friends and even family. Since I am a widow it is wonderful to have my son and grandchildren help me with things in and outside the house. The yard alone is impossible for me to tackle, being on a hillside and I congratulate all of you who do gardening while sitting!! I am taking off in a month on a trip where I will have to change airplanes. My daughter is going with me and we have ordered a wheelchair which will mean I would have to stand in line and as we all know that is impossible. For me I cannot stand even 10 seconds!! So I'm very nervous about my venture and also the convention that I will be going to. But I'll take my trusty cane seat while at the convention and just plop myself down on it whenever the shakes start and to heck with what anyone thinks, I've long gotten over that!! Attitude is so important and I've made jokes about wearing a sign around my neck that says "If I am standing I can't talk to you, so if you want to talk lets find a chair somewhere". Hang in there to everyone, this is %&&@ that we all go through.................
By sue134
Hello all :)
Glad you are all able to get out-and -about
Last edited by sue134 on Wed Jul 30, 2008 7:48 am, edited 7 times in total.
By MikeS
15 in the grand scheme of things it doesnt sound a lot,but when you have a dog to walk its the equivalant of trying to climb Everest in flip flops.
What is it about lamposts that makes the dog have to stop and in turn me stop.It must be a great sight for the neighbours to see the race for the lampost to lean on and the dog to ...well to do what dogs do.This is one of the things that I do find exuasting ...Should I take one of my armoury of seats.maybe the wheelchair.the kitchen stool,or the one from the bathroom..maybe just the fishing stool.The thing is he is older (in doggy years) than me he doesnt want to walk anymore and I dont want to stop!
Just another thing that we have to deal with.
Keep smiling!

Last edited by MikeS on Mon Jul 28, 2008 11:57 am, edited 1 time in total.
By patty
Hi Mike, now you know you neeeeed this doggy to keep you as fit as possible, if you did'nt have him/her you would be less mobile & you know what less mobile means with our complaint! so keep walking & keep leaning, it gives the neighbours something to entertain them anyway & you certainly have that factor.

Take care, Patty
By MikeS
Well Im off to my first concert tonight since offically being diagnosed .Its not in a normal arena so they dont actually have a wheelchair area.The last time I went to one it was a nightmare because as soon as the band started everyone stood up and I couldnt. so I just sat there listening to the music and watching the people in front dance.So this time I have phoned the organisers and told them of my condition and they have told me that the will have seats for me that will allow me to see the whole concert sitting down.I will let you know if it works out...or not.By the way its a Simply Red concert 59 years old Im still an old rocker at heart.
Hey Peggy ,Lorrie and all my Rochester friends how about an update on whats happening with you guys.As you have gathered I am like a dog with a bone with this thread.I want the Neuroligists and fellow OTers that read this site to see how we cope and what we do to to beat it!
Keep Smiling
By stella R
Hi Mike and everyone,
we all seem to be in the same boat with this diease.
MY doctor said he only has 2 other patients with ot.
I Always ask him about that
I find it is becoming more and more difficult to get around these days.
When i try to walk it feels like my leggs weight a ton.
Oh well , i guess we just keep going.
take care all
By patty
Hello everyone, just wondered how the concert went Mike, did you cope ok? Glad to hear you are still an enthusiastic rocker, could'nt think of anything better than a Simply Red Concert, bet it was great. By the way the fab weather has ended here in blighty & its not Simply Red its Simply Pouring Down!!
Take care all, Patty
By MikeS
Hi Stella
We are all in the same boat..but we have to keep going .I am one of two patients at my clinic with OT as well.My specalist as nice as he is can only suggest stuff he see on the internet .When I came off of my meds he gave me a list of 6/7 more and said google them and see which one I fancy..not exactly a break through in medical science.Stella we all have good and bad days sometimes you just have to vent and here is as good as place as any ..because we are all here for you and only we know how it feels.xx
The concert was brilliant the organisors made sure I had a place for my wheel chair at the top and I even had a wall to lean on when everyone stood up .I must have looked like a nutcase leaning against a wall shaking(through choice I my add)my arms in the air.
Keep Smiling
By MikeS
I decided today to go swimming something I havent done for a long time as I am afraid Greenpeace might see me and think Im a beached whale and try and put me back into the sea.Anyway I could stand in the pool my legs still felt like there was a slight shake but I could stand I didnt feel the need to lean or sit it was fantasic and I am not talking about a few seconds
Has anyone else tried or experienced this ?if not go and try it and let me know if its the same for you.
Of course as soon as I got out everything was back to normal ..well what we consider normal.
By MikeS
Dont you all be going quiet on me things are happening and you arent
I am just going off to the local Town Hall to try and sort out a disabled badge for my car .This not going to be easy as my Spanish isnt brilliant and their rules and regulations are as complicated as jig saw puzzle with no picture on it.But Ive set aside the whole day for it
Ill let you know what happens
Keep smiling
By patty
Morning all, I think everyone must be on holiday as it is very quiet on the forum at the moment, you just have to step outside your front door Mike & you are permanently on holiday (lucky you), just to explain to those who don't know that lol means "laugh out loud" I only know because my grandchildren use it & I thought it meant "lots of love" very presumtious of me!

It's nice to know you can get similar disability accessories in Spain as the UK, Mike you could try taking the printed version from this site of the disability logo with you, then you would'nt need to gesticulate in broken english/spanish, buena suerte.

Regards Patty
By Lynda
Hi Mike

On the swimming subject, I find that when I am in the pool it feels wonderful. My tremor barely affects me - a great feeling! However, on coming out of the water, my balance is twice as bad as normal and I stumble about hardly able to walk. On a holiday in Bali a few years ago I spent a lot of time in the pool, but had to make sure that there was someone there to support me when I got out. On the occasions when there wasn't, I had to crawl out on hands and knees and then stagger to the nearest sunbed - whether or not there was anyone on it!!

I have been tempted to go to a aquarobics class at our local pool (as I think this might be a form of exercise that I could cope with) but to be honest the 'getting out' bit really puts me off! I do live on the South Coast of England - only 5 minutes from the sea - but I haven't tried swimming there. I really think I would have severe difficulty coming out of the water. I doesn't help either that it is a very pebbly beach which makes walking difficult anyway (or that the weather is rarely suitable!).

Sounds as if I'm making excuses doesn't it - but I really do want to find a form of exercise that suits our condition. Answers on a postcard...!

All the best

By Marianne
Hi Jolarson: I noticed that you are a US resident. Based on your post, it seems as if you are having more and more difficulty getting around. Please read my post on Resources. I went back and forth with my health insurance company because I had requested a small motorized scooter to get around. It took me probably two solid years since they wanted me to try a wheelchair first (I have a torn rotator cuff (unrepairable) resulting from a fall due to the OT, which would make it difficult to manuever a wheelchair. They denied my request twice. At the last hearing, via telephone, they allowed me to speak for 10 minutes to tell them how it feels to have this debilitating condition and how I have no control over it; the condition controls me. Note that you should have the full cooperation of your neurologist since they expect to have letters from him explaining your condition.
At the end of two weeks they had overturned their two previous denials and awarded me a motorized scooter. The insurance company paid 90% of the cost and it cost me less than $200. Since my plan was to use this scooter for outings (to shop, etc) I inquired and found that most US auto companies have a program where they will reimburse you $1,000 if you install a hoist on your auto so that you can carry the scooter (completly assembled) in your car. In our case, we have a small SUV which would accommodate it. Since October of 2007, I have my own electric scooter and I cannot begin to tell you how it has freed me from my virtual prison. You may want to look into this if you feel that you need more than a "rollator" to help you get around.

Good luck

By jolarson
Kaylie, so interested that you were able to get your scooter. Now I know when I feel I need one how to go about contacting my insurance company and doctors, thanks for the information. This stuff we are going through is debilitating and there are days that I simply do not want to leave the house. But attitude is such a big part of handling POT that I have to say yes to invitations out and just make myself do the necessary errands etc. and although it sometimes is a struggle handling shopping carts etc. I always feel better that I have pushed myself out socially. But I do have a question for all of you, do you find that your energy level is down? This is another area that bugs me about this disease.
By patty
Hello everyone, my energy levels are dreadful, but I also have underactive thyroid which does'nt help energy etc.

Another weird thing happened yesterday my husband and I went to the cinema (mama mia) we arrived a little late & it was in darkness, well, trying to get to a seat was really odd, I felt very disorientated, fortunately we managed to get two seats at the end of a row, I know its difficult enough trying to get to a seat at the best of times but the darkness seemed to exaggerate my OT, now what's all that about, any ideas?

Take care all, Patty
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