Hi,
I'm Mary and currently reside in Katy, TX. I was diagnosed from a neurologist in Houston, TX 2 weeks ago. I've been having symptoms for approximately 6 years. Like many others, I originally self-diagnosed and then followed up with a neurologist. I to, was relieved to find out I wasn't crazy, or just imagining things.
It all came together for me when he explained that OT was driven by adrenaline, and not necessarily anxiety. Huge relief for me. This past year has had me attending many social events and my husband retired from one job and started a new job after 28 years with 1 company. Along with that, the holiday parties, retirement parties, family visiting, and much travel found me a bit anxious but also adrenaline ridden.
I initially never told anyone about my legs as I thought it could have been a side effect from excessive alcohol consumption. I've been in recovery from alcohol for approximately 4 years and finally decided I was able to face whatever the diagnosis was.
As a child, I had 4 crushed vertebrae. Therefore, we decided that I should have an MRI on my back just to make sure to rule out anything else. I had that MRI yesterday I'm waiting on the results. Don't really think it will show anything to change the diagnosis.
Not currently on any medication for OT. We are going to discuss options when I return to the neurologist.
Just wanted to say, "thank you" to Gloria, and to all of you that have preceeded me in diagnosis and for the information that you have shared. Looking forward to possibly meeting some of you in the future. Best wishes for the future for us all! Mary
Welcome to the forum! Sorry we meet because you have OT, but you have found lots of support and friends here.
I think you are the first one to have said a neurologist explained OT was driven by adrenaline. I have ALWAYS said that; even told neurologists I have seen I felt like a VCR in fast forward, and I felt my adrenaline was always "maxed out", as if I were in a "fight/flight" mode. None ever understood.
Do keep us informed as to how you are doing; we are all interested.
We ALL thank Gloria for this site; I found it right after she put it up. She has been our mentor and our friend.
Hi Mary and Betty,
The adrenalin thing really does explain the feeling I get with these tremors. The shakes tend to build on themselves, the longer I fight them the louder and mer insistant they get.
Since I'm here I'll update my own story a bit. I'm now moved, this past weekend, to an apartment that will be a bit more wheelchair accessible. Ramps are on the way, hopefully will be in this coming weekend. As so many have commented here, the wheelchair is often a scary topic. So, I want to give a little insight into my own experiences now that I've been using one for the past few months.
I got a walker, just last Sept. I felt almost silly, like I was being too dramatic about this OT stuff. As I've written earlier here, I had to convince that doctor to even listen to me, then the physical therapist he referred me to, was shocked that he didn't think I needed a walker. In just a couple of months I realized the walker just wasn't going to work. I never realized how much we stop and start and stand for minutes at a time, and each time that would hapen I'd have to sit and get up. The tremors just went right down my arms and into the walker, and left me feeling even more unstable.
By Nov. I knew I would need to try to get a wheelchair. I thought it would be years before moving to a wheelchair, but my OT got worse much faster than I thought. I changed doctors, and by January I had seen her twice and she was amazingly supportive, and prescribed a wheelchair without even blinking.
To my surprise I immediately fell in love with my wheelchair. I thought I would feel like a failure, and I did feel a little depressed until I realized with the help of those around me who could see I was not just giving up. I now understand the wheelchair is my way back into my life. It is in my chair where I finally feel safe and normal again. There is no need to be fighting with the constant jittery feeling. I'm learning that it's ok for me to "take the easy way out".
This past weekend, moving has really brought all of this home to me. With boxes everywhere I couldn't always use my wheelchair to get around the house like I was getting use to doing. So, I now appreciate more that I can still walk, and I can still stand if I lean, even though I feel jittery, at least I can. With the wheelchair I am free to just be myself again, without putting all of my energy into standing.
One final thing that I want to say, is that I was afraid of how much worse and how quickly the OT was incroaching on my life. By going into the wheelchair it has given me a sense of putting an end to the "free fall" that I've felt with the OT progression. I was walking six miles not even two eyars ago. Now, I have no ability to stand without asistance. I cannot safely walk alone outside of my home for even steps. I do think I'm the exception as far as how fast and furious OT hits. I have had it for 15 or more years, but it really wasn't effecting me that much. I have no idea what happened to get it going lately, and now it doesn't matter. I'm adjusting to life on wheels, and I know I'll be ok, better than ok. I'll be my smiling active self again with even more for people to wonder about when they see me.
What an uplifting and positive note you wrote! It makes me, if not many others, have second thoughts about using a wheelchair. I have a cane, which I use at times ~ not because it is helpful, but because it indicates to others I have a problem.
I also have a light walker, but it is not useful at all. As you wrote, it transfers my tremors from my legs to my upper body ~ not good. I KNOW I am progressing much more quickly than I had expected, but I am trying to accept that; although not easy when one has been so active all their life. There is little I can do now, but again, I am trying to accept my limitations ~ again ~ not easy.
I have thought a wheelchair might be in my future, but I don't want to think that way at this point. I continue to TRY on my own. However, I find I am going out less and less because it is so difficult and exhausting. Can you manage your wheelchair alone? Are you able to lift it and get it in your car? I wouldn't be able to lift one, and would have to depend on my husband or someone else for that. It is all I can do at this point to lift a gallon of milk.
You do make a wheelchair sound very inviting! It would certainly take the anxiety out of trying to get around ~ especially in a store or crowded place.
You sound like me....I can see the progression of my OT and it seems to be progressing quickly. I don't read others writing that. Perhaps it's because I am unable to take the medications which are helpful to most.
Your move would have been difficult; we made two BIG moves within a period of seven months and I wondered at the time if we would be able to do it ~ but ~ we do what we must. We still have boxes to unpack, but we will get to them.
Please keep us posted and thank you for your positive note.
Hi Marlana and Betty
As I have posted before I have had a wheelchair for several years now but have only started using it a lot the last 6 months or so. I only use it when I am out of the house right now as I am able to function with my multitude of stools and handy chairs throughout the house. I always have it in the car with me when we go out. My husband rigged up a way to carry it in the back seat of our car safely. We have a mid size car not an SUV so we had to come up with an idea to free up the trunk. We cut the side of a big plastic storage container and the wheelchair slides nicely into it and then can be belted with the seat belt. It works out really well. I usually let husband do it for me but I can take it out and in if need be. When we have our grandchildren with us we just transfer the chair to the trunk for the time being. They really get a kick out of pushing me around.
I really enjoy shopping again as I don't have to worry about standing in lines or finding somewhere to sit while my husband does.... even leaning on a shopping cart makes my tremor worse. I also use it for many social events and anything else that requires any standing. It really has made my life so much easier and less stressful. When we were on a driving holiday to Arizona last November I have it with me and it was the best holiday ever as I could actually enjoy looking at everything. We will be attending a wedding in Boston in June and I shall be taking it with me for the flight, the sightseeing and the festivities.
My mother is now in a complex care home and I also take it with me when I visit. It really helps me to get around the facility and her room and enables me to stop and talk to the residents without stressing about where to sit.
Hope this helps by sharing my experiences with a wheelchair.
Hang in there and enjoy life.....
All the best
Chris
Hello Chris and Betty and all,
Chris your writing here played a big role in my ability to accept that I really needed the wheelchair and it was the right tool for me, not a bad thing, but a blessing.
I'm legally blind, so I don't drive, so I can't answer your question, Betty, about whether or not I could handle the wheelchair on my own, while driving. However, I would encourage you and others here to at least talk with a seating and mobility specialist. They can show you the various items like wheelchairs, scooters and so on, and you can talk to them about the level of your abilities, and what tools would work best for you.
I was so surprised at how compact and easy to handle the chair is for others to handle. It weighs about 35lbs, but my chair's wheels pop off with a push of the a button, which takes the weight down quite a bit more. Since I use my feet to propel around the house and in some settings, I also take the arms off, which means I can usually manage most regular width doors and tight places. My chair is a Quickie, Breezy. It's considered one of the top of the line before you get to titanium which is very light, but insurance won't usually cover them without a certain diagnosis, not usually for tremors, at least not for the first chair.
It folds and fits easily into even small trunks. I have used it for shopping with a friend, and I felt so much relief and aliveness, I almost cried with the joy and freedom of stress. The way I deal with the independence issue is to live in a place where I can get to stores within blocks of my home. I get my groceries delivered, Safeway is the most common store that delivers by ordering online. I order many household products through Amazon online. Most cities offer some kind of transit for wheelchair users. So, if I want to be independent I need to learn about those services and use them. I'm used to thinking this way because of my blindness, which I was born with, so I know such services do exist, at least in most large cities. You just need to learn about them, and use them without shame or feeling less than others. That's a big adjustment, even for me having lived with this frame of mind. I still fight it all, and I want to live on my own terms, but I've also learned that I CAN find a way to do what I want, even if I end up doing them in a different way. Now I just have to do things on wheels instead of on my feet.
For a few weeks, I kept stressing out on making the decision to use a cane, a walker or just white knuckle and guess how much I could stand in each situation . Finally I realized that the decisions themselves were getting silly. I finally just said, after getting my wheelchair, that I would always take it with me, even if it seemed silly. Because even the tiny steps or the seconds I might need to stand waiting for an elevator were just making my life so difficult I'd rather stay home. I know that when I choose to stay home, I'm hiding from the stress of standing upright, it's ok if I want to do that, but if I want to be happy and enjoy life, I need to be in a wheelchair, and I need to take the decision out of the equation. So, now my chair goes with me or I don't go, period. I think it's easier for everyone around me to just know that my chair goes with me, no more questions, accept it or not, I'm done with the stress of this OT. I choose to be relaxed and comfortable, I have enough stress just dealing with my daily life, the chair can help, I'm happy to have it and those who love me also can see how much happier I am when I'm sitting than when I'm standing and fighting the tremors.
The first time I tried the wheelchair, my boyfriend was with me and he said I just lit up. When I'm standing and dealing with tremors I can hardly carry on a conversation, I frown and search for something to lean on, I am completely unable to be present. Using a wheelchair is sometimes even better than walking, for me. I feel like I'm flying, very much like I did when I used my Guide Dog, I always cried the first time I would take a new dog out at the Guide Dog School. I felt almost like I could see. The chair makes me feel almost like I can walk and stand again. Pure joy, simple and free of stress.
Thank you, Chris, for sharing your wheelchair experience, I know my journey to acceptance would have been much more difficult without knowing your story.
Hi Marlana
Glad to be of help. You described the feeling of freedom so well. It is so nice to be relaxed and enjoy yourself. I shall probably look into getting a lighter and more compact wheelchair myself sometime although I am a fairly big person. This was just my first foray into wheelchairs and I am learning a lot. My family doctor has been really helpful although I am sure he doesn't fully understand my condition.
Your positive approach to our condition is wonderful considering that you have to deal with being blind as well. What a great inspiration you are.
Stay well and look forward to hearing from you again.
Chris
My goodness, a lot of conversation on this subject, and I REALLY appreciate the experiences you both shared. I suppose I MUST at least consider a wheelchair, but, I feel as though I am giving up if I do that.
I have always been so independent, and now I am not. I do find, as I said, I am going out less and less, and that's not good. It is just too exhausting for me to go places and try to stand (we know how that goes), and leaning; that too has its problems.
I suppose I haven't totally accepted the fact I am not the woman I was, and never will be again. Did I mention I am also stubborn????
Marlana, as Chris mentioned, you are an inspiration to us all and we could take a page from your Book of Life.
Hi Betty
You are not giving up your independence when you get a wheelchair....just making your life so much easier and stress free. I guarantee once you get one or at least try one you will really enjoy it. I have one with the big side wheels right now but took the foot rest off and use my feet to propel myself around. It is wonderful!!!! Now I don't stress about going out like I used to and tend not to be so house bound. There is a lot of living still to do for us.
My husband initially insisted that we talk to the doctor about getting me the wheelchair as he was tired of me declining invitations to events such as receptions, wine festivals and any other thing that required a lot of standing. We would often go and I would end up sitting down somewhere away from everything that was going on. Now I can be front and centre and most people make room for a wheelchair.
Try it....it can't hurt. Good luck and keep us posted.
Enjoy life!!
Chris
Thanks for the information and encouragement; it does give me "food for thought". I will think about it because I seem to be in the same place you were....not wanting to attend functions when I must stand, or I would find a place to sit and sit all evening.
I could not agree more with Chris! A wheelchair isn't the end, it's the beginning of a new life! I've learned that it's ok for me to be happier and feel relaxed. It's all about priorities. When the balance (pun intended) of our daily lives becomes overwhelmingly stressful, it's a gradual thing, even when it happens relatively quickly, over a period of months. We can gradually isolate ourselves just trying to keep our stress levels manageable. When the stress gets so loud, a wheelchair becomes a wonderful friend, one who supports and helps give me a sense of peace and safety.
I thought I would rarely use my chair in the house, but I find that I use it mostly in the kitchen. Even though I have to stretch to reach the sink to do dishes, I prefer stretching to fighting the tremors. Life does not have to be an endurance test, it's ok to make our lives easier.
Thanks for your most positive remarks; I certainly will take them into consideration. Right now, I have stools in the kitchen and bathroom, and use them.
Hi
I have just been diagnosed with OT although I did a search after a visit to my GP ( who dismissed me and actually laughed and asked me what would happen if I DIDN'T sit down - would I just fall over - ha ha ) and began to suspect I had this as all the symptoms tied in.
I have had this for just over a year now - seemed to come after a virus a couple of Christmases ago. I am otherwise healthy - although have very high cholesterol and take 40g of Simvastatin per day. I did think it was a side effect of these tablets but the 2 doctors and the specialist do not think so.
My specialist today said it must be OT - there is no other explanation - he also said he had never seen a positive case of this before so we both ended up looking at google results. I am to see him again in 9 months and he will be writing to my doctor with tablet suggestions in case I can't cope meanwhile.
I do think I cope quite well - the worse things are standing in a queue - the airports are very bad. I also notice it quite a lot when I am browsing round shops or ironing.
I walk miles and the consultant has said that I am strong so I am going to keep the walking up. He said all tremors are made worse by stress but I don't very often get stressed out. I am coming up 59. Happy to find this forum and that the diagnosis wasn't something worse.
[quote="Sheila S"]Hi
I have just been diagnosed with OT ..... Happy to find this forum and that the diagnosis wasn't something worse.[/quote]
Dear Sheila,
When I was diagnosed couple of years ago the OT was explained as "one of those things you just get - no one knows why". There are many such illnesses that are not running in the family or have external causes, they just come along uninvited. I was also afraid it might be "worse" such as ALS or MS... and in a sense happy it is "only" OT.
I will not write more here in the introduction thread, but if you want to know my story - see below as I have my own sort of diary in a thread by itself (OT - experienced over time). All the best to you Sheila,
"the golfnut" Anne
Hello Sheila, and welcome to the OT Forum. You will find many friends here with offers of advice and encouragement.
Since you are newly diagnosed, you probably have many questions. All of us on this site will be more than happy to try to help you.
I want to address the remarks to you by your GP; I feel that was one of the MOST unprofessional responses I have ever heard, and am sorry you had that experience.
If the specialist you saw, does think you have OT, and was willing to read about it, then give him/her this site and he/she will be able to check so many links, many are from other physicians who have linked to Gloria's site. There is one very well known neurologist in England, Dr. Bain, who has linked here. I don't know where you live in England, but you might check to see if he is close enough to you to have him test you.
If you have read many of the things written here, you will find Neurontin is the medication which seems to help most people. Some take Klonopin (that is what I take presently). There is nothing which will totally eliminate our tremors, but some help.
I agree with you, and I think others would agree as well, stress is a MAJOR factor with our OT. Stress, as you know can happen when we are trying to stand, or are trying to get through a crowded room, or shopping. We just learn different ways of coping.
Walking usually does decrease our tremors, and if you are walking "miles", you are doing the best thing you can do. Also, exercise to keep your "core" strong. It does sound as though you are doing all the right things; so keep up the good work and let us know how you are doing.
Mary
