New to the forum? post a quick introduction
Moderator: gloria
Re: New to the forum? post a quick introduction
Hello Everyone. I was diagnosed with OT about 3 years ago by a neurologist here in AZ. Altho I am happy to know why I can't stand for very long, It is hard to get used to not doing things I have always done. I find it hard to cook, shop (especially for groceries),clean house, sing in the choir, play bells and shower. I am trying to rid my house of 44 years of things so I can eventually move to a place where I will have more help. I try to exercise often to maintain mobility. I am thankful that I don't have Parkinson's. I would like to find others in AZ to talk to but am thankful for this forum. I come here often to find comfort. KJW
Re: New to the forum? post a quick introduction
Hello KJW : I'm pleased to hear that you find comfort here on the website for it is a place where people can find understanding and help from other OT people. In order to accomplish your wish to meet other OT people from a location near you, you must show your Location in your Profile, if not it will not show on the memberlist and will only stay in this posting . In order to leave your location so it will show on the memberlist and whenever you post, you must go back to your Profile where you registered and leave it there. Click on here to show you how:
viewtopic.php?f=16&t=313
Hope this helps, Gloria
viewtopic.php?f=16&t=313
Hope this helps, Gloria
Re: New to the forum? post a quick introduction
Hi Gloria,
TY for welcoming me to the OT Forum (or is it a blog?) I was definitively diagnosed by a neurologist Oct. 2012. He had me walk (no problems) and then had me stand still and I began to shake. My first symptoms appeared in April 1999... 3 weeks after starting chemotherapy. I relapsed in 2011 and have been having further chemo since then. The OT has become more intrusive in my everyday activities. In searching the web, I did not see any correlation between chemo and OT. However, I feel it was highly coincidental because I never had any issues before chemo and started having symptoms almost immediately thereafter. You can copy and post the text of this email to an appropriate portion of the forum if you wish.
Best wishes,
Gary
TY for welcoming me to the OT Forum (or is it a blog?) I was definitively diagnosed by a neurologist Oct. 2012. He had me walk (no problems) and then had me stand still and I began to shake. My first symptoms appeared in April 1999... 3 weeks after starting chemotherapy. I relapsed in 2011 and have been having further chemo since then. The OT has become more intrusive in my everyday activities. In searching the web, I did not see any correlation between chemo and OT. However, I feel it was highly coincidental because I never had any issues before chemo and started having symptoms almost immediately thereafter. You can copy and post the text of this email to an appropriate portion of the forum if you wish.
Best wishes,
Gary
mini OT meeting in Bray, Ireland
Read about a mini OT meeting in Bray, Ireland : LINK
Re: New to the forum? post a quick introduction
Hi Gary: Since the beginning of the website I have been trying to find the “ common denominator” from the information that people believe was the cause of their OT. This has become very interesting and reports have ranged from after surgery, a bout with the flu or a flu shot, periods of extreme stress, blows to the head , chest respiratory problems, bronchitis, whooping cough,TB as a child (no antibiotics at that time) , a teacher who contracted “Fifth Disease” from a student and yourself Gary who reports your OT started after your chemo treatment. My thoughts of each of the above is that they all weaken the immune system, our natural defense system against diseases. Another factor is the onset OT community average “mean age” is 50 plus, a time when our immune system itself is already weakened by the aging process and most of our OT friends fall into this timeframe. Gloria
Re: New to the forum? post a quick introduction
Hello All,
I am a self diognosed (and confirmed by my Drs.) to have OT. We have tried all the suggested drugs with no relief. I hold a medical marijuan card for chronic back pain. I know that there has been no research on the use of marijuana for OT. So I was quite surprised when I vaporize (not smoke) and inhale a small amount of marijuana my symptoms are qreatly reduced and somtimes DISSAPEAR along with my back pain being reduced.
I am not advocating the use of illeagal drugs! In my state Medical Marijana is legal.
If you can aquire legal Marijuana, it may help you as it seems to have helped me.
I am a 69 year old man with some other medical issues, diabetes, hypertension, and the rest of the stuff we all seem to get as we age.
I am a self diognosed (and confirmed by my Drs.) to have OT. We have tried all the suggested drugs with no relief. I hold a medical marijuan card for chronic back pain. I know that there has been no research on the use of marijuana for OT. So I was quite surprised when I vaporize (not smoke) and inhale a small amount of marijuana my symptoms are qreatly reduced and somtimes DISSAPEAR along with my back pain being reduced.
I am not advocating the use of illeagal drugs! In my state Medical Marijana is legal.
If you can aquire legal Marijuana, it may help you as it seems to have helped me.
I am a 69 year old man with some other medical issues, diabetes, hypertension, and the rest of the stuff we all seem to get as we age.
Re: New to the forum? post a quick introduction
Hi JR Hanson ...We touched on this at the Sydney gathering ...and since been talked about !
I Have been told there is a spray called SATIVEX that is available in the UK ?....Has anyone out there tried it ?..........all these things are illegal in NZ, but intend to ask my Dr about SATIVEX when next I visit ... Didi NZ
I Have been told there is a spray called SATIVEX that is available in the UK ?....Has anyone out there tried it ?..........all these things are illegal in NZ, but intend to ask my Dr about SATIVEX when next I visit ... Didi NZ
Re: New to the forum? post a quick introduction
Hi, I am new to the forum-just found it online! I was diagnosed in 2009 with OT by a neurologist at Johns Hopkins University. I had started experiencing the "shaky legs" about 6 months earlier and thought I might be hypoglycemic. My family doctor referred me to the neurologist after ruling everything else out. I tried 3 or 4 different drugs and none really helped and the side effects were hard to deal with. So I am not taking anything at the moment. Not sure if it had anything to do with it, but in 2006 was diagnosed with an overgrowth of bad bacteria in my GI system and also diagnosed with parasite-Cryptospiridium. Was treated with 6 different antibiotics before it all cleared up. I am also on Reglan for gastroparesis (slow emptying stomach) and they thought that might be causing the tremors, but after being off it for a while, still had the tremors. I find social situations very stressful, where everyone is standing and talking! I have to keep shifting back and forth and it gets very uncomfortable. My husbands job is such that we have to attend a lot of gatherings that this is the case. I try not to be rude, but sometimes just have to excuse myself and go sit down or walk around. Any suggestions? Thank you!
Re: New to the forum? post a quick introduction
Hello skm and welcome to the site
I used to attend a lot of functions with my husband through his job and found the only way I could cope was to find a wall to lean on and not be surrounded by a "wall of moving people". My husband understood my problems and would also look for somewhere in the room where I would be comfortable. If I was stuck in the throng I tended to grab his arm every time someone moved - not the best when he was holding a glass of wine!! I eventually gave up going to such events as it was too stressful. Went to my first event with him in two years in July, but had the same problem. Luckily he found a leaner table for me, but by the time speeches, etc. were over my legs were so sore all I wanted to do was get out of the room and walk.
Kind regards
Lynette (New Zealand)
I used to attend a lot of functions with my husband through his job and found the only way I could cope was to find a wall to lean on and not be surrounded by a "wall of moving people". My husband understood my problems and would also look for somewhere in the room where I would be comfortable. If I was stuck in the throng I tended to grab his arm every time someone moved - not the best when he was holding a glass of wine!! I eventually gave up going to such events as it was too stressful. Went to my first event with him in two years in July, but had the same problem. Luckily he found a leaner table for me, but by the time speeches, etc. were over my legs were so sore all I wanted to do was get out of the room and walk.
Kind regards
Lynette (New Zealand)
Re: New to the forum? post a quick introduction
Hi my name is Graham, this is my first post. Finding this forum has made a huge difference to the way I now feel about OT. Knowing there are other people out there with the same condition as myself. I have found it very hard to explain to people including my doctor and Neuro. what it is like and how it effects me to have OT. My next appointment with my Neuro. is late November and I can't wait to take all this info. for him to read....Thank you all....Cheers Graham.
Re: New to the forum? post a quick introduction
Grahm: Welcome and thank you for posting on the Forum. You are now a member of our understanding OT Community. I'm pleased that you feel armed with info to give to your doctor in Nov. Please let us know how things go however would enjoy hearing from you before then about when you first noticed the onset of your OT.
My best, Gloria
My best, Gloria
Re: New to the forum? post a quick introduction
skm: Thank you for posting your OT onset and experiences on the Forum including your thoughts about the possible cause of your OT. Your social gathering experience is the most frustrating of all for OT people. You asked for any suggestions since you are obligated to attend and I would suggest that perhaps getting a folding wheelchair this way you will be more comfortable and people will know that you have a problem and accept your situation without asking questions. Hope this helps, Gloria
Re: New to the forum? post a quick introduction
My name is Susan, I live in Florida and was diagnosed more than a year ago by my neurologist, who was convinced just by resting her hand on my thigh as I stood. She went on to do a new MRI and other nerve-response tests in her office as well. I had been afraid I might have MS, which my father died from, so OT was quite a relief given that context. Insurance changes forced me to see a new neurologist, who called my diagnosis Orthostatic Hypotension and told me to eat more pickles... but she also recommended and prescribed klonopin, so I guess she's very confused. I've decided to go back to my first doctor and pay out of pocket.
I had been trying to figure out what was going on for at least two years when I first asked for a referral to my neurologist; the tremors had started when I was practicing ashtunga yoga, which is fairly demanding, twice a week and feeling quite fit for a change. It seemed that pretty suddenly, whenever I held a pose with weight on my legs, they would tremble. At first I suspected it was caused by hunger so I made sure to eat a good lunch and a light snack of yogurt a couple hours before class, but none of that helped. The only idea I had left was that I was "getting old" (I was 54 then)... strange as it sounds, I unwillingly decided to give up yoga! I couldn't deal with doing it 'badly'. I really don't know what I was thinking -- not much, apparently. Now I can see I was really scared.
About a year later I read that the anti-depressant I was taking might be correlated with leg tremors, so I worked with a psychiatrist to try a whole barrage of alternatives. None of those worked as well for me, and the trembling did not change over the course of one year without Cymbalta, so I went back to taking it. Just a month ago I started taking a small dose of klonopin, which helps a little, I think.
My mother-in-law is also diagnosed with OT and she's quick to tell me how it is progressive and gets really bad, which I try not to listen to. Suffice to say she is no comfort to me.
A few times, waiting in line in a store, I've become self-conscious about what the people next to me are thinking -- that I'm a drunk & need a drink? It's tough.
I had been trying to figure out what was going on for at least two years when I first asked for a referral to my neurologist; the tremors had started when I was practicing ashtunga yoga, which is fairly demanding, twice a week and feeling quite fit for a change. It seemed that pretty suddenly, whenever I held a pose with weight on my legs, they would tremble. At first I suspected it was caused by hunger so I made sure to eat a good lunch and a light snack of yogurt a couple hours before class, but none of that helped. The only idea I had left was that I was "getting old" (I was 54 then)... strange as it sounds, I unwillingly decided to give up yoga! I couldn't deal with doing it 'badly'. I really don't know what I was thinking -- not much, apparently. Now I can see I was really scared.
About a year later I read that the anti-depressant I was taking might be correlated with leg tremors, so I worked with a psychiatrist to try a whole barrage of alternatives. None of those worked as well for me, and the trembling did not change over the course of one year without Cymbalta, so I went back to taking it. Just a month ago I started taking a small dose of klonopin, which helps a little, I think.
My mother-in-law is also diagnosed with OT and she's quick to tell me how it is progressive and gets really bad, which I try not to listen to. Suffice to say she is no comfort to me.
A few times, waiting in line in a store, I've become self-conscious about what the people next to me are thinking -- that I'm a drunk & need a drink? It's tough.
Re: New to the forum? post a quick introduction
HELLO Sarah & Susan: Thank you for introducing yourselves as new members of our OT Community.
Sarah you are really a newbie only being diagnosed 6 months ago..I like your spirit about willing to help with research. All of us who have OT must work hard at anything that will help our future. We are planning to have a second research session in Omaha, Neb. USA next Spring, I don't know how you would feel about coming the distance but we have had OT people from Europe and other countries come to our meetings. It is a great feeling to be with other OT'ers and share time with them. You will find a lot of information about the first session on the website. The more you read the website you find where we are in time as a neurological movement disorder as well as different treatments that fellow OT friends have tried, coping skills etc........ Susan I consider you a newbie too and you are already finding out how OT challenges us. Sorry you had to give up ashtunga yoga. I had to give up golf which I truly miss so I know how you feel. I took up Chair Yoga four years ago and enjoy the stretching that we do with moderations of yoga positions sitting on chairs. I doubt that this would satisfy you since you were doing as you said " demanding yoga". I see that you are learning and trying different things and that is what you must do. If you are taking any meds that are taking the edge off your symptoms l would go with it so your legs do not feel as cranky as they would be by not taking anything. We do not have any medications that will stop our symptoms completely. Before I forget, you said that you live in Florida but leaving your location in a posting stays only with that posting. You must go back to your profile where you registered and leave your location there and then it will appear everytime you post. I know there are a number of people who live in Florida on our memberlist so maybe you can arrange to meet. Hope to hear from the both of you as you learn to work around this OT in your lives. Gloria
Sarah you are really a newbie only being diagnosed 6 months ago..I like your spirit about willing to help with research. All of us who have OT must work hard at anything that will help our future. We are planning to have a second research session in Omaha, Neb. USA next Spring, I don't know how you would feel about coming the distance but we have had OT people from Europe and other countries come to our meetings. It is a great feeling to be with other OT'ers and share time with them. You will find a lot of information about the first session on the website. The more you read the website you find where we are in time as a neurological movement disorder as well as different treatments that fellow OT friends have tried, coping skills etc........ Susan I consider you a newbie too and you are already finding out how OT challenges us. Sorry you had to give up ashtunga yoga. I had to give up golf which I truly miss so I know how you feel. I took up Chair Yoga four years ago and enjoy the stretching that we do with moderations of yoga positions sitting on chairs. I doubt that this would satisfy you since you were doing as you said " demanding yoga". I see that you are learning and trying different things and that is what you must do. If you are taking any meds that are taking the edge off your symptoms l would go with it so your legs do not feel as cranky as they would be by not taking anything. We do not have any medications that will stop our symptoms completely. Before I forget, you said that you live in Florida but leaving your location in a posting stays only with that posting. You must go back to your profile where you registered and leave your location there and then it will appear everytime you post. I know there are a number of people who live in Florida on our memberlist so maybe you can arrange to meet. Hope to hear from the both of you as you learn to work around this OT in your lives. Gloria