The Orthostatic Tremor Forum (archive)

Hi Everyone,
We also had a holiday in Canada just before the children went back to school. Now the weather is so incredibly beautiful I hesitate to be indoors. I still check here daily. I've been really monitoring myself more lately to see how I feel when I do different things. I am at my best after a good nights sleep. I fall to pieces if i feel hurried or anxious.
I have been following the Weight Watcher diet for a few weeks and I think I have been better with my OT when I eat really healthy. Don't knpw yet. I have lost 4 pounds and my energy is increased. We also walk 1 hour a day and have begun 15 minutes of hand held weights. Can't hurt right? I tried the vitamin B12 for a week or so but didn't notice any difference with the OT. However I got a lot done as I felt like I was on speed!!
I havn't stopped doing anything because of the OT and I won't, I'll just find a new way to do it, I vacuam the whole house on my bottom, I think Richard does that too.
I am taking Spanish this fall because I am still going camping in Mexico this winter, I'll just take my stool with me and sit everywhere I go.
I hope everyone keeps posting, I just thought I would post my nonsense.
Joan

Hi Everyone
I have not posted anything for a few days because after my visit to my neurologist last week I needed time to think.
Basically my initial reaction was that it was a bit of a waste of time apart from being told the same stuff as I was told on the last visit ,'Google these meds and see which one you want to try next',I have tried Gabapentin and it didnt suit me even though there were times during the day I could stand longer than normal but the side effects outweighed that.The decision I have to make is do I want to keep trying new ones till I find one that 'works' whatever 'works' means.I dont think I want to do this.
A question. Do they stop the tremors or do they just make you feel less anxious?
Joan said that she has to do everything at her own pace when hurried she feels anxious, I am the same.
He also suggested I saw a Psycologist to help me deal with my Ot I must admit that I am considering this .Has anyone tried this?
He also wants me to have a blood test for B12 deficiency which is interesting because its a topic a few have been talking about and it was going to be something I was going to mention to him.So after my few days of thinking I have decided it wasnt a waste of time at all and recomend that everyone has regular consultations.
Keep posting and
Keep smiling
Mike

Hi Mike!

I have my appointment with my neurologist on Monday. Yes, it will be a repeat of April's visit. He will have me walk down the hallway and back. Do some touching my nose to his pointed finger, heal tapping, holding my hands out, etc. and will ask me about the medication he prescribed back in April (Mirapex). I took it for about one week after weaning myself off the Clonazapam. I started feeling like a Zombie and stopped it immediately and gradually went back to the Clonazapam. Then, if he has read anything about another drug which might help, he'll try to talk me into trying it (for it just might be the one that will control the tremors). So I walk out of there with a prescription for a new drug (and of course, I always ask for a Clonazapam prescription). Clonazapam seems to take the "edge off" (keep me a little steady) but does nothing to ease the tremors. It may just be a psychological thing at this point since I have been on the medication since 1996. Don't get me wrong. He is one of the finest movement disorder neurologists according to the New Yorker magazine. However, his real specialty is Parkinson's and I know this because he collaborates with another physician, doing medical trials and writing grants for reasearch.

This time, however, I have a few questions for him, those that we have been bouncing around our forum for a few months, i.e. does thyroid disease have any affect on OT, hereditary factor re parents to children, over-the counter meds that might relieve our symptoms. I'M JUST REALLY TIRED OF HAVING 10 BOTTLES OF MEDS ON MY KITCHEN COUNTER WHICH DO ABSOLUTELY NOTHING FOR MY TREMORS. I'm also going to ask him if he has heard of or knows of Dr. Matsumoto, Dr. Diego Torres-Russoto or Dr. Bain (in London) who we know from this forum are studying OT.

On top of the OT, I injured my form my left medial meniscus a few years back and had arthroscopic surgery to repair it. The knee has gotten progressively worse and on a trip to an orthopedist not too long ago, an x-ray of the knee revealed that there is no cushioning between the bones and now they are starting to rub, bone to bone. The doctor gave me two choices; either bear the pain or have knee replacement surgery. I am contemplating this and will probably make my decision early next year if I can hold out that long. Back problems are always a part of OT for most of us since we always try to stand longer than we can. As you all know, it puts a severe strain on our lower backs and I for one seem to to walk about at times in a hunched manner.
I'll report back after my Monday visit. Until then,

Keeping smiling

Kaylie

Wow, lots to think about this morning!!! Mike, you've done a lot of thinking this week, it's agonizing trying to figure out what to do. I have still not gone to a specialist, just seeing my GP. and thinking that I have to make an appointment soon and see a neuroligist. I didn't want to because I think they just poke you and give you drugs.Anyhow Mike, you got me to thinking, should we start a thread and see how many of us have anxiety? I started one for phobias but that wasn't something we had in common but maybe the anxiety is.
Kaylie, I'll be thinking about you tomorrow, let us know how it goes for you. Poor you with your knee on top of all this. I understand that the surgery works beautifully. Keep the faith.
Joan

Hi Joan: Thanks for your thoughts.

Take good care,

Kaylie

During my 29 OT years I have learned to appreciate personal “ escapes” from the gripes of OT. So here are a few of them:

One of my favorites is driving my car, there I can cruise down the road feeling so normal with not a thought of OT. I have always enjoyed driving, it is my element and something OT will not be able to take from me.

Another "escape" going for a quick walk in my neighborhood is very enjoyable. Most of my neighbors know that I can not stop and talk so some of them will join me for a walk around the block and a chance to chat.

One of the most frustrating thing in our lives that we need to” escape” from is trying to explain our problem. Here's a suggestion, try to educate in a very comprehensive way as many people as possible that are a part of your immediate environment such as family, friends, work associates,clubs,and groups. Understanding makes everyone more comfortable.

“Escapes” can be finding new interests or returning to old ones or even if the work environment is becoming too OT difficult think of ways that your job can be made more adaptable or perhaps a new career change might be a better way to go.

I do a lot of catalog shopping but get the urge to "escape" from the catalog. At times the” pre-OT days" shopping is still in my heart and I proceed with a stubborn inventive approach. On most of my shopping adventures I travel alone so I can walk at rather a fast pace going up and down aisles and past racks etc. If I see something on a rack or on display I take it off and quickly look for a place to sit to examine the article in detail. I have been know to brush aside merchandise on display counters just to find a place to perch. If I find something I’m interested in, I flag down a sales person and ask if they would kindly find it in my size,color etc. Generally the sales person realizes I do not have good shopping skills and offers to become my “personal shopper”.

I know that it sounds like I’m making light of our problem but you know that I’m not, these are only examples of some of my ways of staying in control of my days. I encourage you to explore different “ escapes” from our mentally and physically draining disorder.
"Hope you will share your "escapes" within our OT lives".
Gloria

Hi Kaylie
Curious to see how your Dr. visit went.
Joan

Hi Joan:

Yes, I had my typical visit with my neurologist yesterday. I spoke to him about Drs. Matsumoto, Torres, and Bain and he did know acknowledge even having heard about them. I even told him about our forum and he seemed surprised that us OT'ers would have such a forum on line. I hope he looks it up. It seems as if OT is an "orphan condition" and no one seems to be doing any research, serious or otherwise to find out if there is anything out there that will help our tremors. This Dr. is very knowledgeable when it comes to PD or PSP but because he has very few patients with OT seems to be very passive when it comes to questions about it. Since my condition has progressed to a point where I can only travel around with a motorized scooter, I have had to retire from work. He asks just how long I can stand before I have to sit down and the best way I can explain it is: I can't stand up long enough to look through my closet and chose what I will wear. I asked him about exercise, since walking is no longer an exercise option. I do try to do as much as I can around the house, but it's not enough to consider being exercise. He suggests a stationary bike for about 20 minutes a day.

I also asked him about PD and its relationship (if any) to OT. He indicated to me that it is more likely that a person with ET would have a relative or someone in their family with PD. As far as passing OT on to our children, again he says that he cannot say for sure that it is not hereditary, simply because there have been no studies done to determine whether this condition could be passed on to your children. Not something I wanted to hear.

As far as meds go, he looked at the laundry list of drugs that I have been prescribed over the past 12 years and for the first time did not suggest any new ones to me. Quite frankly, I was happy to hear that he had no suggestions because I always felt like a guinea pig whenever he asked me to try another med.
I am continuing with 4mg of Clonazepam daily (down from the 8 mgs I used to take about 6 months ago). I came away from this visit a little disappointed, especially since he was always seeing me every 4 months and now he's lengthened the interval to 6 months.

Not a very encouraging visit, but I am not ready to give into this crazy thing we all put up with. I walk as much as I can, but if I overdo, my lower back starts to pain me and I start walking like a hunchbacked person. I'm always trying to straighten myself and it kinda helps, but as always when the legs say no more, I must have somewhere to sit. As someone else said, my house has stools in every room; I even have one in my closet so that I can sit and choose the clothing I want to wear for the day.
Well, take care all and keep smiling

Kaylie

Dear Kaylie:
I'm so sorry that your visit to your neurologist was a bummer! I have heard this story so often through the years and it makes me sick that a doctor cannot get off his ego and admit that he doesn't know a "darn thing or is he trying to learn about a subject that comes under his "watch" as a neurologist!!!!!!!!!!!!!!!!

Hold your head up high, we are all together in this problem, Gloria

I want to echo your answer Gloria. So true and very frustrating. Kaylie, I was looking forward to your posting about seeing the doctor because you had thoughtfully prepared your questions. But unfortunately, more of the same. It makes this site more important than ever. It's where we can share information about what we all experience with this POT debility. No wonder some of us complain about anxiety!!

Hi Everyone
Just an update .
Im in the UK at the moment I travelled with my wheelchair which was a great help ,except I got 2 flat tyres before I left luckily one of my neibours had a pump.
Can you imagine anything worse teddy bear legs and 2 flat tyres.
I cant emphasise enough how important it is to get wheelchair assistance when using airports.I have been speaking to some people here that have OT and noticed one has joined our community .I hope he will post soon and share some of the things we talked about on the phone I hope you are reading this Len!
Kaylie unfortunatley most of our visits to our doctors leave us frustrated but who knows with the help and information we share here someone may come up with something.
How about you all sharing some stuff about your summer ,did you have vacations? where did you go ? how did you cope?
This site is ours to make the most of so Keep posting and
Keep Smiling
Mike

Hi Everyone
Well I say everyone ,Is there anybody there?
Come on guys post something .This board depends on you for information.If you dont post and discuss things here where else is there?.The OT family needs to keep in touch.
Keep Smiling
Mike

H Mike!
Yes, it has been very quiet on the forum. Where has everyone gone? Without you guys, we are nothing. Visits to our physicians don't really give us much so we count on the forum to keep us going. I for one am going thru a very funky time right now. It happens once in a while: depressed and feeling why should this be happening to me, especially when I've just retired from my job and have all the time in the world to do what I have put off while the children were growing and attending school and college. Now I have to think and plan everything ahead of time; will I be able to do a little walking and just take my walker or do I need the use of my scooter. As my condition has been progressing agressively, I have had to rely more and more on the use of my scooter. I had my tri-annual visit (now he's made it bi-annual visits) to my neurologist about 2 weeks ago and decided to use my legs (with the help of my husband) and we made it from the parking garage to the office bldg (right across from the garage) to the elevators and into the doctor's waiting room. One visit before this, I was able to present myself to the receptionist, but this time, I had to immediately look for a place to sit while my husband "checked" me in. Needless to say, the last few weeks have put me into a funk. So, come one folks, let's see and hear about how everyone is?

Take care

Hello Everyone: Here is an email I received from a gal in the UK. It gives a great message that carrying cards really work!!!!!! Gloria :


While waiting for a cable car in San Francisco I met a lady who, like me, was on holiday there. She told me about her problem with standing and gave me a card explaining her problem which had your website details on it. I thought this was a good idea (a) because it told me about her need to sit down and (b) the website told me more about this problem of which I had not heard previously. Thank you.

Should she be visiting your website, I hope she enjoyed the rest of her holiday - my daughter and I certainly did!

Jackie Evans
UK

Hi Gloria and everyone
Thanks for posting the message from Jackie in the UK. My husband and I have just returned from our driving trip to San Francisco, the Napa Valley and the Oregon coast. We had a fabulous time in San Francisco and we really enjoyed talking to Jackie and her daughter. She seemed very interested in why I was having difficulties standing in line.....in fact my husband did a lot of the standing and I found places to sit or lean. It is nice to know that someone actually reads the cards and follows through on the website. I carry them at all times and have given them to a lot of people who seem to wonder what is going on with my inability to stand.
I did find the whole trip quite wonderful even though I had some issues with standing in lines and taking tours. There seemed to be a lot more tourists than I remembered. On the whole I thought I did remarkably well most of the time but my lower back has paid the price on my return.....probably from all the leaning and shaking. I am slowly getting back to normal and doing more exercising again. One thing we did do was a lot of walking especially the hills of San Francisco and I seemed to manage them without too much difficulty. The worst experiences I had were generally in small shops with lots of merchandise....I usually was in and out very quickly much to my husband's delight. We are glad that we took this vacation at this time as my tremors seem to be getting worse and we will have to modify the way we travel somewhat. I did find some hotel rooms quite difficult but I managed. I even found that the so called handicap rooms were a bit awkward at times. All in all it was a nice way to ease our way in the Fall season which is so beautiful especially here in British Columbia.
Hope everyone had a super summer....lets keep posting. Thanks again Gloria!
Chris