Hello Everyone,
I don't post often, but reading the forum this morning prompted me to say 'Hi". I attended the Omaha meeting last fall and still have great memories and would love to see everyone again. That was the first time I met anyone else with OT and it was a great comfort to know there are others with the very same issues I have. I try not to concentrate on having OT and in the past 11 years I have adapted to it and have learned my limitations. I am also very fortunate to have a most supportive husband who always has an arm to hang on to. One thing I learned at the Omaha meeting that has helped me is that we may think people notice our disabilities, but I don't think it's as much as we may feel. When I first stepped into that room full of people with OT in Omaha I would never have known they had issues with standing, balance, etc. That made me realize that most people were not looking at me any differently and that made me feel good about myself. I think a positive attitude is a must with OT and to do what you can and not worry about the rest. I am thankful I don't have a disease that is any worse....as there are lots of them. It's good to hear from everyone and I agree with you all that we should post more often. Even if it's just to say "Hi".
How is everyone?
Moderator: gloria
Re: How is everyone?
Hi! Pat. It was so nice to read such a lovely updating post to all our friends in the OT community. Our OT life stories are a connecting link for all dealing with this hard to understand disorder. It is not something that in real life non-OT people cannot really comprehend because saying " we can walk but we can't stand" can get some questioning looks!!!!! Thanks Pat for staying connected and look forward to more updating posts from all those weathering our OT. Gloria
Re: How is everyone?
I have had a couple of bad episodes in the last 3 weeks. The other day I was waiting in line at the Post Office, and I had to ask a lady to look after my place in the line while I sat down. When it was my turn, I got up and was berated by the PO woman who asked why I had a reasonably heavy parcel sent to the PO instead of my home address. I felt humiliated in front of the large queue of people, and when I went to pick up my parcel, I was not able to stand and pick it up, so a young guy offered to help. When we got to my car, he asked me what the problem was, and he said he would look up OT when he got home.
Another episode happened just about an hour ago. I had cleaned my teeth and went to sit on the toilet when things turned ugly. I had to move quickly away and then gather my thoughts and make another sortie to get to the loo. Interestingly, just after cleaning my teeth, I felt a very brief, sharp (but not painful) stabbing in my brain. I wonder if there was a connection (excuse the pun) between the pain and the onset of the OT. Perhaps I should speak with my Dr about getting a scan done?
Another episode happened just about an hour ago. I had cleaned my teeth and went to sit on the toilet when things turned ugly. I had to move quickly away and then gather my thoughts and make another sortie to get to the loo. Interestingly, just after cleaning my teeth, I felt a very brief, sharp (but not painful) stabbing in my brain. I wonder if there was a connection (excuse the pun) between the pain and the onset of the OT. Perhaps I should speak with my Dr about getting a scan done?
Re: How is everyone?
Hi! Terry: I'm sorry that you are going thru these stressful OT episodes. I have learned that no matter what I plan to do in public surroundings I take my cane chair with me. It is a sign for all that I have a problem and most of the time people will offer to help knowing that I must have a problem. I think you said in one of your earlier posts that you are self-diagnosed however perhaps you should search for a neurologist who knows about OT and who can help you in your choices of meds and whatever kind of testing needed to answer your questions. All the best,Gloria
Re: How is everyone?
Thanks Gloria. After self-diagnosing, I went to my GP (a golfing buddy) and to his credit he did a fair amount of research and concurred, so I am currently on Clonazapam, and also on a beta-blocker after chatting to another golf buddy (pharmacist), who also did his homework.
I am interested in your cane chair idea. I will also ask my GP to suss out a neurologist who might know about OT here in Queensland.
Can you give me a link to what your cane chair looks like? I needed it yesterday when waiting in line to register at a golf tournament.
Cheers.
Terry
I am interested in your cane chair idea. I will also ask my GP to suss out a neurologist who might know about OT here in Queensland.
Can you give me a link to what your cane chair looks like? I needed it yesterday when waiting in line to register at a golf tournament.
Cheers.
Terry
Re: How is everyone?
Hello Terry,
We are neighbours - nearly! I live in Noosa and I believe I am the only one in the locale that has this far fetched malady called OT. If anyone is even remotely interested enough to inquire what it actually is - the eyes glaze over and interest dies at mention of "difficulty in standing". I am trying to come up with a more compelling description of a disease that makes taking a shower an ordeal, has stopped me going to the gym, the beach, using the pool, taking the rubbish to the basement, attending farmers markets or any social event I cannot be guaranteed a seat. I love bridge because you are guaranteed a seat at this sport.
I think it could become an isolating disease. I find it fatiguing and painful as well, But this could be some other condition I really am not that keen on finding out about, I was prescribed anti convulsion meds. I declined.
I have researched the sitting canes, Life Tec in Brisbane have them and I am going to order one for myself tomorrow.
Let me know if you want to talk.
All the best to you and everyone else on this forum.
There are some incredibly lovely and generous people out there!!
Moira
We are neighbours - nearly! I live in Noosa and I believe I am the only one in the locale that has this far fetched malady called OT. If anyone is even remotely interested enough to inquire what it actually is - the eyes glaze over and interest dies at mention of "difficulty in standing". I am trying to come up with a more compelling description of a disease that makes taking a shower an ordeal, has stopped me going to the gym, the beach, using the pool, taking the rubbish to the basement, attending farmers markets or any social event I cannot be guaranteed a seat. I love bridge because you are guaranteed a seat at this sport.
I think it could become an isolating disease. I find it fatiguing and painful as well, But this could be some other condition I really am not that keen on finding out about, I was prescribed anti convulsion meds. I declined.
I have researched the sitting canes, Life Tec in Brisbane have them and I am going to order one for myself tomorrow.
Let me know if you want to talk.
All the best to you and everyone else on this forum.
There are some incredibly lovely and generous people out there!!
Moira
Re: How is everyone?
Wow! Many thanks for your post Moira. I am off to my GP on Friday to tell him things are not travelling very well for me at present and to see where we go from here. I am still able to play golf (came second today at Pelican Waters), but when trying to carry 2 drinks back from the bar, it took a few moments to actually get into gear and walk back across the room.
I want to take advantage of cheap flights (to Adelaide) at the moment, but I am hesitating because of my OT, so it is now becoming a valid and real disability.
I would love to have a chat and perhaps catch up, so let's try to do that.
Regards
Terry
I want to take advantage of cheap flights (to Adelaide) at the moment, but I am hesitating because of my OT, so it is now becoming a valid and real disability.
I would love to have a chat and perhaps catch up, so let's try to do that.
Regards
Terry
Re: How is everyone?
Hi! Everyone: I know that I'm always asking everyone to keep up their reporting on how they are "traveling thru life" with OT and it is time to do a little updating myself. Recently I have been coping with watering eyes (epiphora) plus inflammation without much success and have been referred to a ophthamologist specialist to determine if drainage channels in the eyes are blocked etc. Nothing serious but annoying because reading and even looking at my computer screen is difficult. Also "Mother Nature" is giving us an overdose of snow and ice so far this Winter and it is the ice under foot that stresses me out looking thru these "Niagra Falls" eyes. Tomorrow's weather report is for more !!!!!! Have plans to go marketing but might stay in house. As far as my OT under normal conditions I would say that it is my OT "standing time" that is lessening considerably the past few years which is normal comparing with other OT friends ...... All best wishes, Gloria
Re: How is everyone?
Hi everyone
Goodness me well into the new year I havnt been back on this site since December ! Progress has been huge in that time ! I now have care givers who hang out my washing get my housework done and take me shopping in a wheel chair .... Which is marvelous ! I actually get to sit and look over my food before purchasing ! The orthopedic people have been to see me a couple of times and they are ordering me a saddle stool for the kitchen which is like sitting on a horse saddle so takes the problem of what to do with the legs when sat on a normal stool away as they are at the side like being on a horse ! The plumbers and builders have been ordered for adjusting my shower control so I can operate from siting on the shelf they are bringing me ! Unfortunately my 'wobbles' have gotten worse and standing time has lessened considerably but I have set up the house with chairs stools etc in every possible space so don't now wobble for too long ! I take my cane seat with me often so despite this disability feel very grateful for all the help I am getting to make life easier for me ! My doctor is ordering me a medical alert braclete so when I am out and struggling people are aware that I am not 'drunk' there is a medical condition going on ! Thank you all for sharing your stories . This is a wonderful site for us to all share our stories and feel the 'love' cheers. Joanna (Tauranga NewZealand )
Goodness me well into the new year I havnt been back on this site since December ! Progress has been huge in that time ! I now have care givers who hang out my washing get my housework done and take me shopping in a wheel chair .... Which is marvelous ! I actually get to sit and look over my food before purchasing ! The orthopedic people have been to see me a couple of times and they are ordering me a saddle stool for the kitchen which is like sitting on a horse saddle so takes the problem of what to do with the legs when sat on a normal stool away as they are at the side like being on a horse ! The plumbers and builders have been ordered for adjusting my shower control so I can operate from siting on the shelf they are bringing me ! Unfortunately my 'wobbles' have gotten worse and standing time has lessened considerably but I have set up the house with chairs stools etc in every possible space so don't now wobble for too long ! I take my cane seat with me often so despite this disability feel very grateful for all the help I am getting to make life easier for me ! My doctor is ordering me a medical alert braclete so when I am out and struggling people are aware that I am not 'drunk' there is a medical condition going on ! Thank you all for sharing your stories . This is a wonderful site for us to all share our stories and feel the 'love' cheers. Joanna (Tauranga NewZealand )
Re: How is everyone?
THANK-YOU JOANNE : A great report about making your life with OT more doable and sharing with all. When Mike our OT friend from Spain first asked the topic question on the website (How is everyone?) it has become one of the most popular of the Topics because we all are interested in how our OT friends are going forward in life with OT.
As always, Gloria
As always, Gloria
Re: How is everyone?
Hello Joanne (from a fellow NZedder!)
It's great to read that you are getting all the assistance to make your home and living with OT as easy as possible for you. I have not had to make such drastic changes as yet, although my husband and I now live in separate parts of the country - he on the Chatham Islands where he works and me in Blenheim for the better weather. We had owned the house I live in for a number of years and had it rented it out, but when it came time that I needed to get off the Island just over two years ago, we decided the house was ideal for me - very small section, no steps, low maintenance brick townhouse. It's reasonably easy for me to keep clean, although I have to do the housework in little spurts, then sit down to rest. You could say that my husband and I living apart has been a "drastic change" but we have adapted. We skype each night and the nature of his work means he is on the Mainland at least once a month (often more) so he visits me whenever he is off the Island.
Yesterday I spent the day in Wellington with Di Conway (DiDi) and Ann Dodd who was visiting from Brisbane. Much chatting was done on the challenges of OT and how we are coping. Di gave me your email address and I will make private email contact with you to offer any support I can. That may not happen for a couple of weeks as I am having surgery on both hands on Tuesday to repair tendon problems. My right hand will only have a small incision made below the middle finger (thank goodness, being right handed won't be impeded too much!), but on my left hand it is the thumb tendons that are giving me a lot of pain, so that will mean an incision just below the wrist and much slower healing. A week after surgery I'm going back to the Chathams with my husband to recuperate.
Take care, and I will be in touch.
Regards, Lynette
It's great to read that you are getting all the assistance to make your home and living with OT as easy as possible for you. I have not had to make such drastic changes as yet, although my husband and I now live in separate parts of the country - he on the Chatham Islands where he works and me in Blenheim for the better weather. We had owned the house I live in for a number of years and had it rented it out, but when it came time that I needed to get off the Island just over two years ago, we decided the house was ideal for me - very small section, no steps, low maintenance brick townhouse. It's reasonably easy for me to keep clean, although I have to do the housework in little spurts, then sit down to rest. You could say that my husband and I living apart has been a "drastic change" but we have adapted. We skype each night and the nature of his work means he is on the Mainland at least once a month (often more) so he visits me whenever he is off the Island.
Yesterday I spent the day in Wellington with Di Conway (DiDi) and Ann Dodd who was visiting from Brisbane. Much chatting was done on the challenges of OT and how we are coping. Di gave me your email address and I will make private email contact with you to offer any support I can. That may not happen for a couple of weeks as I am having surgery on both hands on Tuesday to repair tendon problems. My right hand will only have a small incision made below the middle finger (thank goodness, being right handed won't be impeded too much!), but on my left hand it is the thumb tendons that are giving me a lot of pain, so that will mean an incision just below the wrist and much slower healing. A week after surgery I'm going back to the Chathams with my husband to recuperate.
Take care, and I will be in touch.
Regards, Lynette
Re: How is everyone?
DiDi posted some very nice photos of Di, Lynette and Ann's meeting here - LINK
Re: How is everyone?
Earlier this year your donations along with a special contribution from Lundbeck provided the funds for research into a treatment approach for Primary Orthostatic Tremor.
Lundbeck donates when you click - 1 Click = $1 for Rare Disease Research
Lundbeck has a new campaign for this Rare Disease Day 2015 to raise funds that will be contributed to a general research fund. In a partnership with NORD, the funds may be awarded to any of the rare disease research grants. By clicking on the "Raise Your Hand" link below, Lundbeck will donate $1 towards this fund up to a maximum of $10,000.
http://bit.ly/RaiseYourHand2015
Help Spread the Word. Alone we are Rare. Together we are Strong.™
You can also donate directly to Orthostatic Tremor research through the University of Nebraska Medical Center or NORD, more information can be found at this link: bit.ly/donate2OTresearch
Lundbeck donates when you click - 1 Click = $1 for Rare Disease Research
Lundbeck has a new campaign for this Rare Disease Day 2015 to raise funds that will be contributed to a general research fund. In a partnership with NORD, the funds may be awarded to any of the rare disease research grants. By clicking on the "Raise Your Hand" link below, Lundbeck will donate $1 towards this fund up to a maximum of $10,000.
http://bit.ly/RaiseYourHand2015
Help Spread the Word. Alone we are Rare. Together we are Strong.™
You can also donate directly to Orthostatic Tremor research through the University of Nebraska Medical Center or NORD, more information can be found at this link: bit.ly/donate2OTresearch
Re: How is everyone?
In March of 2000 the OrthostaticTremor.org website was launched to build awareness of OT, and this March is the 15th anniversary.
Even though I had Orthostatic Tremor for many years prior, it wasn't until 2000 when I was diagnosed. At that time there was very little information available and very few doctors had heard of OT. It was a “hidden disease” making it hard to be identified and was greatly misdiagnosed. Searching the internet today for Orthostatic Tremor is very different from how it was when I returned home from the doctor with my diagnosis. And that void in March of 2000 sparked the need to start the website. The goal was to build a community of sharing, and most important to create awareness of this rare disease.
I’m writing this update looking back in time where I was with OT “then” and “now”. The need to learn coping skills was less in the early stages of my OT adventure because of the longer time that I could stand before the onset of contracting leg muscles, and tremors took hold! However, the progression of OT over time has turned minutes into seconds. And now, coping with this disease is a challenge every day. Also years have brought on other health issues that compounds and exacerbates the effects of OT. Certainly this has meant accomplishing much less during my average day, plus the emotional stress that sometimes becomes a part of it. I have adapted as best as I can and recently to cope with heavy shopping and errands I have now engaged someone to help me with such chores.
I am very grateful to the efforts of everyone that have formed and attended meetings around the world, for the OT research, and happy for those that have been fortunate to have met someone else with OT. Thanks to all who found the website and shared their OT experiences on the forum. This has been group effort of building public awareness.
It is important to continue to support funding of the research with the UNMC (University of Nebraska Medical Center) and NORD (National Organization of Rare Diseases). With your support brings hope for the future.
To be continued .......... Gloria
- above is Gloria's latest post to her experiences "blog", you can read all of her posts back to the original one in March of 2000 from the link below….
http://bit.ly/OTexperience
Even though I had Orthostatic Tremor for many years prior, it wasn't until 2000 when I was diagnosed. At that time there was very little information available and very few doctors had heard of OT. It was a “hidden disease” making it hard to be identified and was greatly misdiagnosed. Searching the internet today for Orthostatic Tremor is very different from how it was when I returned home from the doctor with my diagnosis. And that void in March of 2000 sparked the need to start the website. The goal was to build a community of sharing, and most important to create awareness of this rare disease.
I’m writing this update looking back in time where I was with OT “then” and “now”. The need to learn coping skills was less in the early stages of my OT adventure because of the longer time that I could stand before the onset of contracting leg muscles, and tremors took hold! However, the progression of OT over time has turned minutes into seconds. And now, coping with this disease is a challenge every day. Also years have brought on other health issues that compounds and exacerbates the effects of OT. Certainly this has meant accomplishing much less during my average day, plus the emotional stress that sometimes becomes a part of it. I have adapted as best as I can and recently to cope with heavy shopping and errands I have now engaged someone to help me with such chores.
I am very grateful to the efforts of everyone that have formed and attended meetings around the world, for the OT research, and happy for those that have been fortunate to have met someone else with OT. Thanks to all who found the website and shared their OT experiences on the forum. This has been group effort of building public awareness.
It is important to continue to support funding of the research with the UNMC (University of Nebraska Medical Center) and NORD (National Organization of Rare Diseases). With your support brings hope for the future.
To be continued .......... Gloria
- above is Gloria's latest post to her experiences "blog", you can read all of her posts back to the original one in March of 2000 from the link below….
http://bit.ly/OTexperience