I am new to the group. My name is Dell and I live in the southeastern part of the US. I'm a 60 yr old female and had to retire a year ago because getting ready for work in the morning exhausted me. I guess it was because It was so hard to stand up. Showering, dressing and doing my hair caused shortness of breath and profuse sweating. When I got in the car to go to work, sweat was dripping off my hair over my ears and down my face, even in the winter time. Does anyone have this symptom along with the shaky legs?
I, too, have seem numerous neurologists (one of those sent me to a psychiatrist and made me wonder if I was crazy). I've had numerous tests including 2 mri's of my brain, pulmonary and cardiac studies, 2 spinal taps as well as tests to rule out MS, Lou Gehrig's disease, tumors, etc.
I am so glad to finally have a diagnosis of OT and find this support group. I received my diagnosis fr a neurologist at Oschner's Clinic in New Orleans. She was determined to help me and wouldn't give up.
As far a meds, I'm taking gabapentin (Neurontin) 300mg 3 times a day and have very good results. I was able to cook Thanksgiving dinner with help and doing it in advance and putting stuff in the freezer. Last year, I don't remember what I did for the holiday, but don't think I cooked so I know I am much better. I don't seem to have side effects from the meds at this time, however, if I sit down to read soon after I take a dose, I'll go to sleep. If I'm sitting at the computer or sewing machine I stay awake. I do seem to have more short term memory problems, however.
The way I have coped with this disability is to enjoy the perks it offers:
1. I now have a disability tag on my car and can park close to the door when shopping. I also use a motorized cart in the stores if they are available. I want to do my own shopping as long as I can. It's good for me to get out of the house. I get help shopping for groceries, cooking, and cleaning the kitchen from family members.
2. I cook a few simple meals that don't require much standing, like using a slow cooker or putting something in the oven and using convenience foods. I was tired of cooking more elaborate meals, anyway.
3. I almost always use a cane when away from my house. People instintively know a person with a cane needs a chair if one is available. I don't look like I have a disablility and people say I don't look as old a 60. That's the reason I use the cane, even when my legs aren't so shaky. I don't want strangers in the stores to pity me or feel that they need to help me but I do need a chair if one is available or sometimes need a little extra help from a salesperson.
4. Also, I have been searching for interesting things to do sitting down, instead of just watching old movies on Turner Classic Movies (although I do some of that also) I purchased a new sewing machine that does more than just a straight stitch and I'm learning to use it. (I hated sewing in the past, ever since taking home economics in shcool) I have even made some things that look good enough for my grandchildren to wear (and speaking of grandchildren, I am able to spend much more time with them than before...and it's quality time as I sit and play board games or cards with them or read to them. They know Nana's legs don't work right even if they do look ok). Sewing has really helped my attitude, self confidence, etc. Also, I was getting tired of my job and working in general and really enjoy all the things I can do now that I'm not working. I recently took a non-credit creative writing class and have done more work on genealogy. I have also volunteered to work 2 hours a week in my granddaughters 3rd grade classroom. It's good for her and for me. Her teacher knnows if I have a bad day, I'll call and won't come to school that day. There are lots of fun things to do sitting down and I intend to explore them.
5. Last but not least, I am so relieved to have OT (even though I know it's a serious and disabling problem). The head neurologist at LSU said my cerebellum(brain) was shrinking and what I had was progressive and probably hereditary and there wasn't a thing in the world he could do to help me. I looked it up on the internet and had a pity party thinking abt who was going to change my bedpan. I am not worrying abt that anymore and am thankful every day that I can standup and walk to the bathroom on my own. and that I have OT instead of that other condition.
I don't intend to sound like a Polly Anna. Sometimes I am very down and depressed but it passes eventually. I don't think much abt the future, just abt what I am going to do today. If I don't feel like doing it, I don't. I give myself permission to get in the recliner and rest. I have worked for many years in my home and at a job and I have earned a rest.
I have another question in addition to the questing I asked earlier abt the profuse sweating. For some time I have had memory problems. I reverse phone numbers, have trouble with the names of objects,etc. The drs say I don't have Alzheimer's. The short term memory thing seems worse lately. Does anyone else have this problem?
I didn't intend to write so much in this post. There is just so much to say when discovering OT. I promise my next posts will be shorter.
New to the forum? post a quick introduction
Moderator: gloria
Re: New to the forum? post a quick introduction
Hi my name is Michelle Fontaine and I am from Saskatoon, Saskatchewan in Canada.I am 52. I have lived with OT for approximately 5 years now. Just after Christmas I developed a severe flare up of my OT symptoms. Prior to this flare up I was managing not too bad with my symptoms... by leaning on walls,desks, chairs, counters etc. This is no longer the case. I now cannot stand for more than 6 to 7 seconds without severe shaking of my legs. Leaning no longer works for me. I am having trouble coping at home with sweeping the floor, doing any cooking at the stove, washing dishes in the sink. I am now using a bar stool to sit on as much as possible in the kitchen. I have not been to work since the end of December. I am waiting to get in to see my neurologist to see if there is some new pill to try, since I have tried all the ones already that everyone in the forum has tried. I would like to know where I could order a folding high stool from? I would have really liked to use that the other day in the line up at the bank. This is probably a familiar story but I went to the bank and to my dismay... there were litterally 18 people ahead of me. So I decided to try to tough it out and see. After a very short time, I was swaying, sweating, worrying,anxious, pacing and finally I said to the lady behind me... "Could you save my place for me?" I went to the other side of the building and found a chair and dragged it into the line up and sat down. Relief !!! Every few minutes I would drag my chair forward and sit down again. So I could really use a fold up high stool. I am going to physio and really working on the core excerices in hopes of strengthening up my legs, core, etc. It has been great to read on the forum about others and realize that I am not alone. I was wondering if there was anyone from Saskatchewan out there?
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Chris
- Posts: 91
- Joined: Sun Dec 26, 2004 2:28 pm
- Location: Okanagan Valley, British Columbia, Canada
Re: New to the forum? post a quick introduction
Hi Michelle
Welcome to the forum. Nice to talk to have someone closer to me. I am in the Okanagan in British Columbia. I know exactly what you are going through. I too can only stand for a few seconds now without having to look for somewhere to sit. I try to avoid lines whenever possible and I too have dragged a chair behind me if I get really desperate. I use a wheelchair if I want to do a lot of looking and shopping. I propel it with my feet and push it when need be. I also use the store power carts whenever possible. I have used fold up canes and seats but find that they don't help a lot for me. I still seem to shake when sitting on them. I have a fold up director's chair which I find very useful as well. I have lots of various height stools through out my house....some that swivel......and that makes my chores easier especially in the kitchen. I use an old computer chair to move around the kitchen when I wash the floor or vacuum. Fortunately I have a super husband who helps me a lot otherwise I am not sure where I would be. I am sixty years old and had to retire from my job just over 5 years ago when I was no longer able to manage standing for a lot of the day. I now enjoy other things in life and keep as positive as possible. Drop me a line anytime. I would love to hear from you. Chris
Welcome to the forum. Nice to talk to have someone closer to me. I am in the Okanagan in British Columbia. I know exactly what you are going through. I too can only stand for a few seconds now without having to look for somewhere to sit. I try to avoid lines whenever possible and I too have dragged a chair behind me if I get really desperate. I use a wheelchair if I want to do a lot of looking and shopping. I propel it with my feet and push it when need be. I also use the store power carts whenever possible. I have used fold up canes and seats but find that they don't help a lot for me. I still seem to shake when sitting on them. I have a fold up director's chair which I find very useful as well. I have lots of various height stools through out my house....some that swivel......and that makes my chores easier especially in the kitchen. I use an old computer chair to move around the kitchen when I wash the floor or vacuum. Fortunately I have a super husband who helps me a lot otherwise I am not sure where I would be. I am sixty years old and had to retire from my job just over 5 years ago when I was no longer able to manage standing for a lot of the day. I now enjoy other things in life and keep as positive as possible. Drop me a line anytime. I would love to hear from you. Chris
Re: New to the forum? post a quick introduction
Dear Dell: I apologize for not answering your posting sooner but I want you to know that the way you are directing your life is the way I wish everyone with OT would do. We must recognize our disability and find ways to retain some of our independence. You are doing just that. Good work! In answer to some of your questions sweating is when we get over stressed , I try to sit down before reaching that point of our limited time. Memory of words is something I have trouble with when speaking and think it might be the gabapentin , however when writing that doesn't seem to be a problem. I have been on gabapentin for 10 years and though I too have very limited standing time I find I do manage and feel better with it than without it. Gloria
Re: New to the forum? post a quick introduction
Hey Michelle,
I hope you got my email.
I live in WINNIPEG.
I would really like to chat with you.
My email is stelrye@yahoo.com.
Looking forward to hearing from you.
Take care
Stella Ryan
I hope you got my email.
I live in WINNIPEG.
I would really like to chat with you.
My email is stelrye@yahoo.com.
Looking forward to hearing from you.
Take care
Stella Ryan
Re: New to the forum? post a quick introduction
Hi
My name is Marcia and I live in Central Florida. After one year of telling 3 Nerologist that I thought I had OT after finding your site, a Doctor at Shands Hospital in Gainesvielle told me that I had POT. What a thrill to finally have a diagnosis. After spending the past year having 6 MRI's, spinal tap, EEG, and other tests to be able to tell my friends that I have been diagnosed.
Thank you for having the OT site available to those of us that are searching for an answer.
I have had some relief in the past month and do not know if it has been from the acupunture I have had (3 sessions) or some chienese herbs that I started at the same time.
My name is Marcia and I live in Central Florida. After one year of telling 3 Nerologist that I thought I had OT after finding your site, a Doctor at Shands Hospital in Gainesvielle told me that I had POT. What a thrill to finally have a diagnosis. After spending the past year having 6 MRI's, spinal tap, EEG, and other tests to be able to tell my friends that I have been diagnosed.
Thank you for having the OT site available to those of us that are searching for an answer.
I have had some relief in the past month and do not know if it has been from the acupunture I have had (3 sessions) or some chienese herbs that I started at the same time.
Re: New to the forum? post a quick introduction
Hi Marcia,
I just wrote a looooong reply to your post; hit the WRONG key and it is now in cyberspace! Soooo, I will try again!
My name is Betty and I, too, live in Central Florida. I live in Rockledge; where are you located? If we are close enough, perhaps we could meet and 'chat'. If you haven't had the opportunity to meet someone else with OT, it is quite an awesome experience!
You were fortunate to get a diagnosis within a year; it took me many years and eight ~ yes ~ eight Neurologists before I got my diagnosis.
Those of us who have found Gloria's site also find many 'friends' who are willing to try to help in any way we can. I have been very fortunate to have met Gloria, she is a 'sweetheart'. I have also met many others and correspond with several; and we have become friends as well.
If you would like to get in touch with me, either by post or email, my email address is: bjlhi@yahoo.com If you write to me please put OT in the subject line, because I won't recognize your name and would probably delete it.
Hoping to hear from you.
Betty
I just wrote a looooong reply to your post; hit the WRONG key and it is now in cyberspace! Soooo, I will try again!
My name is Betty and I, too, live in Central Florida. I live in Rockledge; where are you located? If we are close enough, perhaps we could meet and 'chat'. If you haven't had the opportunity to meet someone else with OT, it is quite an awesome experience!
You were fortunate to get a diagnosis within a year; it took me many years and eight ~ yes ~ eight Neurologists before I got my diagnosis.
Those of us who have found Gloria's site also find many 'friends' who are willing to try to help in any way we can. I have been very fortunate to have met Gloria, she is a 'sweetheart'. I have also met many others and correspond with several; and we have become friends as well.
If you would like to get in touch with me, either by post or email, my email address is: bjlhi@yahoo.com If you write to me please put OT in the subject line, because I won't recognize your name and would probably delete it.
Hoping to hear from you.
Betty
Re: New to the forum? post a quick introduction
Hi Betty,
How are you doing.
I haven't heard from you in a while.
Are you doing ok these days.
I am still the same.
Still taking gabapentin. Weather it helps that much i don't know.
Very cold here these days.
Do you go out much now?
Send me a note.
My email is the same
stelrye@yahoo.com
Bye for now
Stella
How are you doing.
I haven't heard from you in a while.
Are you doing ok these days.
I am still the same.
Still taking gabapentin. Weather it helps that much i don't know.
Very cold here these days.
Do you go out much now?
Send me a note.
My email is the same
stelrye@yahoo.com
Bye for now
Stella
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sheilamerle
- Posts: 3
- Joined: Thu Feb 17, 2011 7:27 pm
Re: New to the forum? post a quick introduction
Hi, everyone. My first name is Sheila-Merle. I live in Marin County, just north of San Francisco, CA. I first noticed the shaking while standing 13 or so years or so. It started with larger tremors and leaning helped, but it only seemed to happen when I had to stand a lot for a few days in a row, like in the 5-day bodywork classes I taught. I blamed myself for not working out enough, and did nothing about it. My regular lifestyle was sedentary enough, that it didn't happen all the time. It must not have bothered me enough, cause I did nothing about it, even though the one time I tried skiing again, my legs shook so much I had to sit down and slide. Denial is an incredible thing!. It never occurred to me to go to a doctor and my husband was a doctor and he never suggested it! I would just lean or find a chair and vaguely blame myself. The sweats started to come with it, too. Then, after my husband's death I started to drink heavily and lie down most of the time. The alcohol and the muscle atrophy greatly exacerbated the tremors. I too had to cook things where I could do an action, then sit for 5 minutes and repeat. I had to slide down the stairs on my butt to take dinner down to the TV room and I still didn't do anything.
Once I quit drinking and started to exercise again, I have gotten better enough in normal muscle function over the last 3 years that it was clear I had a problem beyond lack of exercise or side effects of alcohol. After 10 years of my life being incredibly affected by this disorder, I finally saw a neurologist. He took down my symptoms and researched them. The next visit he did a "hertz" test on me and excitedly told me the diagnosis. He was excited because he had never seen this malady. I was thrilled to have a diagnosis; it wasn't my "fault" after all. It was no longer something to be embarrassed about! He started me on Gabapentin, 300mg 3X/day. In my layman's wisdom I only took it twice a day because it was more convenient. The next visit when I told him I hadn't noticed any results he wrote for Klonopin. My psychiatrist said absolutely not, and after researching user's feedback on the internet, I was completely against it, too. I then took my Gabapentin as prescribed, and that plus intense work on my support muscles led to standing for 10 minutes last week before symptoms. A miracle!
Before the Gapentin, what had helped was Pilates core work, and work at the gym on the support muscles deep in the pelvis and on the lateral stabelizers in the hips. I have a letter from my GP that lets me go through the disabled lines when traveling, and I carry a folding triangle stool with me. I just got the sling cane seat to try. I still lead a fairly sedentary life, but I can take my dog on hikes and visit with people for a while standing up. My dream is to go to museums again.
Sorry this is long, but I am so happy to find a group of us and to find other people that lean. (tee hee)
Once I quit drinking and started to exercise again, I have gotten better enough in normal muscle function over the last 3 years that it was clear I had a problem beyond lack of exercise or side effects of alcohol. After 10 years of my life being incredibly affected by this disorder, I finally saw a neurologist. He took down my symptoms and researched them. The next visit he did a "hertz" test on me and excitedly told me the diagnosis. He was excited because he had never seen this malady. I was thrilled to have a diagnosis; it wasn't my "fault" after all. It was no longer something to be embarrassed about! He started me on Gabapentin, 300mg 3X/day. In my layman's wisdom I only took it twice a day because it was more convenient. The next visit when I told him I hadn't noticed any results he wrote for Klonopin. My psychiatrist said absolutely not, and after researching user's feedback on the internet, I was completely against it, too. I then took my Gabapentin as prescribed, and that plus intense work on my support muscles led to standing for 10 minutes last week before symptoms. A miracle!
Before the Gapentin, what had helped was Pilates core work, and work at the gym on the support muscles deep in the pelvis and on the lateral stabelizers in the hips. I have a letter from my GP that lets me go through the disabled lines when traveling, and I carry a folding triangle stool with me. I just got the sling cane seat to try. I still lead a fairly sedentary life, but I can take my dog on hikes and visit with people for a while standing up. My dream is to go to museums again.
Sorry this is long, but I am so happy to find a group of us and to find other people that lean. (tee hee)
Re: New to the forum? post a quick introduction
Hi Sheila
Welcome to the forum.
Most of us had seen many doctors before we got a proper diagnoses.
I too am on Gabapentin. I have taen it now for 3 years.
I find it does help some.
I use a walker for shopping wheelechair for travelling stools around the hose.
We do what we have to to make to get around.
Nice to hear from you.
I live in Mnitoba Canada.
Take care,
Stella Ryan
Welcome to the forum.
Most of us had seen many doctors before we got a proper diagnoses.
I too am on Gabapentin. I have taen it now for 3 years.
I find it does help some.
I use a walker for shopping wheelechair for travelling stools around the hose.
We do what we have to to make to get around.
Nice to hear from you.
I live in Mnitoba Canada.
Take care,
Stella Ryan
Re: New to the forum? post a quick introduction
I just registered for this forum. I have had O.Tremor for about 3 and 1/2 years. I am 83.
I am in pretty good health outside of OT.
My neurologist prescribed several meds in the beginning to test the best ones.
The prescriptions that works best for me is Propranolol, 20 mg. 4 times per day and Clonazepam, .5 mg
2 at bedtime.
I had started Propranolol years ago for High Blood Pressure. If I don't take my doses of this every 4 hours, I
can sure tell the difference my wobbliness. I can stand at least 2 minutes unassisted when I stay on this med,
before I start to get wobbly. That wasn't the case when I was first diagnosed.
The Clonazepam prevents my legs from jerking at night and gives restful sleep.
The most difficult time is upon rising in the morning before I take my first dose of Propranolol.
It takes about 15 to 20 minutes to kick in. Some days I can be very wobbly and have the yell out symptoms,
especially before I take the meds or when I need a dose of medicine.
I am thankful the medicine works pretty well, as that was not always the case.
It's good to hear about others who have this as well and I hope you have success in controlling it as well.
I am in pretty good health outside of OT.
My neurologist prescribed several meds in the beginning to test the best ones.
The prescriptions that works best for me is Propranolol, 20 mg. 4 times per day and Clonazepam, .5 mg
2 at bedtime.
I had started Propranolol years ago for High Blood Pressure. If I don't take my doses of this every 4 hours, I
can sure tell the difference my wobbliness. I can stand at least 2 minutes unassisted when I stay on this med,
before I start to get wobbly. That wasn't the case when I was first diagnosed.
The Clonazepam prevents my legs from jerking at night and gives restful sleep.
The most difficult time is upon rising in the morning before I take my first dose of Propranolol.
It takes about 15 to 20 minutes to kick in. Some days I can be very wobbly and have the yell out symptoms,
especially before I take the meds or when I need a dose of medicine.
I am thankful the medicine works pretty well, as that was not always the case.
It's good to hear about others who have this as well and I hope you have success in controlling it as well.
Re: New to the forum? post a quick introduction
First, I wanted to welcome you, Sheila-Merle, to the forum. It is a wonderful site and you will find so many people willing to offer help and/or suggestions. Of course, all of us are different ~ but the one binding factor is our tremors ~ they seem to be the same for everyone. However, some are more severe than others because they have not found a medication which helps.
Also, you are so right; denial IS an incredible thing. As we first realize we have some sort of a problem, we make excuses for why. I did that for years until I FINALLY realized it wasn't because I was doing too much, or I was just tired, or whatever reason seemed to fit. I realized I had a problem.
You were also fortunate you received your diagnosis after only being seen by one neurologist. It took me years, and seeing eight neurologist. It was very discouraging, but I was finally diagnoised in NYC. It was such a relief to have a name for this malady.
If you can find anyone on this site who is near you, you might be able to meet. It is a great help to be able to actually SEE and TALK to someone else ~ in person ~ who has OT. Good luck and keep a positive attitude!
Betty from Florida
Also, you are so right; denial IS an incredible thing. As we first realize we have some sort of a problem, we make excuses for why. I did that for years until I FINALLY realized it wasn't because I was doing too much, or I was just tired, or whatever reason seemed to fit. I realized I had a problem.
You were also fortunate you received your diagnosis after only being seen by one neurologist. It took me years, and seeing eight neurologist. It was very discouraging, but I was finally diagnoised in NYC. It was such a relief to have a name for this malady.
If you can find anyone on this site who is near you, you might be able to meet. It is a great help to be able to actually SEE and TALK to someone else ~ in person ~ who has OT. Good luck and keep a positive attitude!
Betty from Florida
Re: New to the forum? post a quick introduction
Hi Lorraine,
Welcome to the forum! I am sure you will find a lot of informaton and people who are willing to do whatever they can to answer questions or offer suggestions.
You indicated your neurologist had tried several medications on you and found Propranolol and Clonazepam seemed to work best for you. I took Propranolol (Inderal) for high blood pressure years ago, but no longer have that problem and am off the Propranolol. It made my blood pressure too low.
I have tried a laundry list of medications and am sensitive to most ALL which help and am unable to take them. I can take Clonazepam (Klonopin), and that is what I take now. It helps take the edge off, but that is about all I can expect at this time. As I wrote to Sheila-Merle, we are all different, yet suffer the same malady; and what works for one doesn't necessarily work for all. We just continue to try different ways of coping.
I hope you continue to do well with your medications and keep checking the forum for information.
Good luck.....
Betty from Florida
Welcome to the forum! I am sure you will find a lot of informaton and people who are willing to do whatever they can to answer questions or offer suggestions.
You indicated your neurologist had tried several medications on you and found Propranolol and Clonazepam seemed to work best for you. I took Propranolol (Inderal) for high blood pressure years ago, but no longer have that problem and am off the Propranolol. It made my blood pressure too low.
I have tried a laundry list of medications and am sensitive to most ALL which help and am unable to take them. I can take Clonazepam (Klonopin), and that is what I take now. It helps take the edge off, but that is about all I can expect at this time. As I wrote to Sheila-Merle, we are all different, yet suffer the same malady; and what works for one doesn't necessarily work for all. We just continue to try different ways of coping.
I hope you continue to do well with your medications and keep checking the forum for information.
Good luck.....
Betty from Florida
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Mac_Mark
- Posts: 2
- Joined: Sun Jun 05, 2011 3:25 am
- Location: Gresham, Oregon - Basically a Suburb of Portland.
Re: New to the forum? post a quick introduction
My name is Mark, I’m 41 and I was just diagnosed with OT on 6/3/11 by a neurologist who I found very attentive and concerned (we talked for an hour at my appointment, unheard of now a days). I was also diagnosed with Essential Tremors the same day. I didn’t know what they were but just knew that I had been shaking in my extremities for many years, as long as I could remember, but they were getting worse.
I feel like I have a million questions even after reading through a lot of the forum pages. If the diagnosis is correct, I have been having symptoms of OT for about 3 years now. Oddly, I seem to mainly have the problem when I try to play hockey. My symptoms seem slightly different than many of the people I have seen who have posted in the sense that it is more sporadic for me. I used to have my legs give out on me and start shaking randomly during my hockey games. Sometimes early in the first period, other times as late as the end of the game. Now for the past 10 weeks I have not been able to play at all because I can barely stand and start shaking very badly right when I try to step on the ice. My doctor and I hypothesized that it could be the strain on my leg muscles by balancing in my skates as I walk to the ice surface that initiates the “attack”.
Generally speaking, I can walk for a half an hour and rarely have the symptoms, like weakness and shaking. Sometimes it will happen when I try to go up and down the stairs in my house or occasionally I will lose my balance while standing. I tend to lean on walls a lot too.
One thing that really confuses me is the fact that I seem to have it in my arms to a certain extent. Often if I raise my arm above my head (for example, combing my hair in the morning) it will feel weak and start to shake. I haven’t seen posts from your forum people that address arm issues. (Maybe that’s an extreme Essential Tremor reaction?)
At any rate, I want to thank you for your forum and tell you I appreciate any info you can share. Take care.
I feel like I have a million questions even after reading through a lot of the forum pages. If the diagnosis is correct, I have been having symptoms of OT for about 3 years now. Oddly, I seem to mainly have the problem when I try to play hockey. My symptoms seem slightly different than many of the people I have seen who have posted in the sense that it is more sporadic for me. I used to have my legs give out on me and start shaking randomly during my hockey games. Sometimes early in the first period, other times as late as the end of the game. Now for the past 10 weeks I have not been able to play at all because I can barely stand and start shaking very badly right when I try to step on the ice. My doctor and I hypothesized that it could be the strain on my leg muscles by balancing in my skates as I walk to the ice surface that initiates the “attack”.
Generally speaking, I can walk for a half an hour and rarely have the symptoms, like weakness and shaking. Sometimes it will happen when I try to go up and down the stairs in my house or occasionally I will lose my balance while standing. I tend to lean on walls a lot too.
One thing that really confuses me is the fact that I seem to have it in my arms to a certain extent. Often if I raise my arm above my head (for example, combing my hair in the morning) it will feel weak and start to shake. I haven’t seen posts from your forum people that address arm issues. (Maybe that’s an extreme Essential Tremor reaction?)
At any rate, I want to thank you for your forum and tell you I appreciate any info you can share. Take care.
Re: New to the forum? post a quick introduction
Hi Mark, welcome to the OT Forum community!
I say 'welcome' because you have found the one place you will find a lot of support and information; however, I am so sorry to hear you have been diagnosed with OT. You will find everyone here will do whatever they can to help you and answer any questions you may have.
You mentioned you also have Essential Tremors; that does occur for many of us,(I being one), they seem to be more noticable when I am attempting a delicate task or trying to write ~ especially when I am tired.
You also mentionded your legs start shaking when you are playing hockey. From my own experience, when I exert myself doing something physical; my legs as well as my whole body will begin to tremor. I used to be an avid golfer, but am no longer able to play. But that is just me. There are MANY others on this site who continue to do all the things they have always done and do not experience what I do. Althought we are all the same in the way OT affects us; we are still different in many ways.
Also, you said you can walk for a half hour and rarely have symptoms; walking is one of the BEST things we can do to keep our muscles toned and strong. Walk as much as possible. Stairs seem to be a problem for most of us; more so coming DOWN the stairs rather than going up. That is easier, at least for me. As for your balance, that is part of the problem with OT; your balance is affected, so we learn different ways of coping with the problems we encounter.
I, too, do a lot of leaning...walls, chairs, tables or whatever is close. I often use my husband as a 'leaning post'. Of course if a chair is available, I will always go for the chair. Sitting or lying down, I have NO tremors at all.
I have not experienced tremors in my arms while coming my hair or brushing my teeth, but I do have them when I use my arms to steady myself. If I transfer my weight from my legs/feet to my arms; the tremors then occur just as in my legs.
Did your neurologist suggest any medication for you? Most people on this site do take medications, and if you have read many posts, you will see a variety of different medications being used.
One thing I might suggest to you; please go back to your profile and add your location ~ where you live ~ city and state. If you add this information (which Gloria truly would like for people to do), you may find someone else in your area. If so, perhaps you could meet that person ~ or people ~ for a 'get together'. It makes such a difference to be able to meet someone else who also has OT so you can discuss your symptoms and compare notes.
Good luck and keep a positive attitude!
Betty
I say 'welcome' because you have found the one place you will find a lot of support and information; however, I am so sorry to hear you have been diagnosed with OT. You will find everyone here will do whatever they can to help you and answer any questions you may have.
You mentioned you also have Essential Tremors; that does occur for many of us,(I being one), they seem to be more noticable when I am attempting a delicate task or trying to write ~ especially when I am tired.
You also mentionded your legs start shaking when you are playing hockey. From my own experience, when I exert myself doing something physical; my legs as well as my whole body will begin to tremor. I used to be an avid golfer, but am no longer able to play. But that is just me. There are MANY others on this site who continue to do all the things they have always done and do not experience what I do. Althought we are all the same in the way OT affects us; we are still different in many ways.
Also, you said you can walk for a half hour and rarely have symptoms; walking is one of the BEST things we can do to keep our muscles toned and strong. Walk as much as possible. Stairs seem to be a problem for most of us; more so coming DOWN the stairs rather than going up. That is easier, at least for me. As for your balance, that is part of the problem with OT; your balance is affected, so we learn different ways of coping with the problems we encounter.
I, too, do a lot of leaning...walls, chairs, tables or whatever is close. I often use my husband as a 'leaning post'. Of course if a chair is available, I will always go for the chair. Sitting or lying down, I have NO tremors at all.
I have not experienced tremors in my arms while coming my hair or brushing my teeth, but I do have them when I use my arms to steady myself. If I transfer my weight from my legs/feet to my arms; the tremors then occur just as in my legs.
Did your neurologist suggest any medication for you? Most people on this site do take medications, and if you have read many posts, you will see a variety of different medications being used.
One thing I might suggest to you; please go back to your profile and add your location ~ where you live ~ city and state. If you add this information (which Gloria truly would like for people to do), you may find someone else in your area. If so, perhaps you could meet that person ~ or people ~ for a 'get together'. It makes such a difference to be able to meet someone else who also has OT so you can discuss your symptoms and compare notes.
Good luck and keep a positive attitude!
Betty