Thank you Jo, yes migraines, OT and being blind are sometimes a bit much. But, at least I'm used to being stared at. (grin) I was born with cataracts, and have had low vision since birth. So, I am used to having to explain (or not) my "not normal" appearance.
I'm the choir director and president of the music club in the senior community I live in, and that keeps me out and about. People often say they can't belief how much confidence I have and how much I'm able to do things. I think I've grown up compensating and trying to look normal. So now I'm using that ability with OT. Only people who know me in the music club know that I have something going on with me because I have a tall stool when I direct the choir, and I used to just stand. But nobody seems to care, we're all to busy singing and making noise. (chuckle)
Sometimes my closer friends will say, "You don't look like you have a balance issue." I laugh and say, "Well, I just keep walking, and I sit right away". If I get caught talking to someone and there is no chair, then I interrupt them and say that I need to sit or lean, and I just start walking or backing up until I find something to sit or lean on and then we keep talking. People are used to me now, so we don't talk about it much, they just follow me and keep talking.
Yes, I'm exhausted after the music club, chorus practice and our talent show we had last week, 100 people in the audience. I was really proud of myself for getting through it, that stool was my best friend!
Anyway, I feel lucky because I do have so much experience already with coping with a disability. In fact I'm planning to start a group in our community, I have a Masters in Social Work, MSW, so I know how to lead groups. Anyway, I want to start a group to educate seniors about how to cope with every-changing levels of ability as we age. Also on creating meaning in our lives, which is another way of saying finding and creating a reason to keep on living.
I'm amazed at the level of stress that's going on with so many of us, and yet so little support at the time in our lives when we need it the most. As you can see I have a little bit of a soapbox attitude here. (grin)
Thanks to all of you here, there is some amazing support here with our OT issues.
Hugs all around,
Marlana
Getting a diagnosis
Moderator: gloria
Re: Getting a diagnosis
Marlana, what an inspiration you are. I loved reading about what you have coped with your entire life and I just admire you so much. Go girl, keep posting because you inspire us all.
Re: Getting a diagnosis
Thanks, Jo, I happen to be feeling better these days, I'm now completely weaned off the Beta Blockers and onto Neurontin. So at least I don't feel like I'm walking on a rolling ship, so that helps. My tremors are much lighter, and I feel quieter in my mind, and I actually woke up feeling happy the last few days. Gosh it's been a long time since I've simply felt happy.
So, today I feel pretty good, and I'm going to maximize that yummy feeling for as long as I can, spread it out to all of you, and to everyone in my life, to increase it, and maybe it will be there for me on the days when my own happiness has faded for a time. Until then... Weeeeeeeee!!!!
Marlana
So, today I feel pretty good, and I'm going to maximize that yummy feeling for as long as I can, spread it out to all of you, and to everyone in my life, to increase it, and maybe it will be there for me on the days when my own happiness has faded for a time. Until then... Weeeeeeeee!!!!
Marlana
Re: Getting a diagnosis
Marlana, I must agree with Jo....you are an inspiration to all of us through your writings. Keep up the good work.
We all can relate to what you are writing; it is just a matter of learning new ways of coping with what is going on in our lives ~ OT.
So happy to read you are feeling better...I do hope the Neurontin continues to keep you feeling happy and with less tremors.
Keep us informed with your progress.
Betty
We all can relate to what you are writing; it is just a matter of learning new ways of coping with what is going on in our lives ~ OT.
So happy to read you are feeling better...I do hope the Neurontin continues to keep you feeling happy and with less tremors.
Keep us informed with your progress.
Betty
Re: Getting a diagnosis
Hello Again, Time for a question and an update.
My question is this: Does OT have an ICD9 or 10 diagnostic code? If so, what is it? The reason I'm asking is because my neurologist, the one who really has listened well, gave me a written diagnosis of Postural Tremmor with an ICD9 code. I do know from working in the medical field a bit, that sometimes doctors or other medical professionals need to give a diagnosis that will give the best insurance coverage. So, I'm going to ask her at my next appointment in a bout a month, but I thought I would put here and see what kind of discussion might come of it. My guess is that even if OT does have a code, which it may not yet, that it's so new and still unknown, that insurance companies would likely not cover it anyway.
So this leads me to another question: Even though I looked up Postural Tremor and it does kind of fit, has anyone else been given this diagnosis? What is your take on the similarities and differences between these two diagnoses?
Ok for the update: I've covered some of this in other posts, so, I will be brief here. I'm still increasing my Gabapentin dosage from 300 mg 3 x day, to 600 mg 3 x day. So far my migraines are much improved, and the tremors are manageable sort of. They seem to be more in more core now instead of just in my legs, the urgency to sit is still very strong, but I can get by with leaning on things better than I could before the Gabapentin.
So, overall, I'll stay with this medicine at least another month until I see my Neurologist, and then we'll see if we can do anything else. I do think my symptoms are getting worse and I'm still amazed at how quickly they have come on, relatively speaking. Just a year ago I was taking Line dance lessons. Today, I can't even imagine standing up long enough to pay for the lessons.
Now I'm researching wheelchairs and moving into an apartment that will accommodate me with less stress. I just signed a new lease, and I think I'll be ok here for the next few months, but I have steps to deal with, right now I can manage them, but if I need to start carrying a wheelchair around instead of a walker, there's now way I can tote a chair up and down these stairs, the walker, I can barely handle.
Anyway, life is an ongoing experiment in adventure and attitude.
Marlana
My question is this: Does OT have an ICD9 or 10 diagnostic code? If so, what is it? The reason I'm asking is because my neurologist, the one who really has listened well, gave me a written diagnosis of Postural Tremmor with an ICD9 code. I do know from working in the medical field a bit, that sometimes doctors or other medical professionals need to give a diagnosis that will give the best insurance coverage. So, I'm going to ask her at my next appointment in a bout a month, but I thought I would put here and see what kind of discussion might come of it. My guess is that even if OT does have a code, which it may not yet, that it's so new and still unknown, that insurance companies would likely not cover it anyway.
So this leads me to another question: Even though I looked up Postural Tremor and it does kind of fit, has anyone else been given this diagnosis? What is your take on the similarities and differences between these two diagnoses?
Ok for the update: I've covered some of this in other posts, so, I will be brief here. I'm still increasing my Gabapentin dosage from 300 mg 3 x day, to 600 mg 3 x day. So far my migraines are much improved, and the tremors are manageable sort of. They seem to be more in more core now instead of just in my legs, the urgency to sit is still very strong, but I can get by with leaning on things better than I could before the Gabapentin.
So, overall, I'll stay with this medicine at least another month until I see my Neurologist, and then we'll see if we can do anything else. I do think my symptoms are getting worse and I'm still amazed at how quickly they have come on, relatively speaking. Just a year ago I was taking Line dance lessons. Today, I can't even imagine standing up long enough to pay for the lessons.
Now I'm researching wheelchairs and moving into an apartment that will accommodate me with less stress. I just signed a new lease, and I think I'll be ok here for the next few months, but I have steps to deal with, right now I can manage them, but if I need to start carrying a wheelchair around instead of a walker, there's now way I can tote a chair up and down these stairs, the walker, I can barely handle.
Anyway, life is an ongoing experiment in adventure and attitude.
Marlana
Re: Getting a diagnosis
Hello Marlana,
To answer your question....I am not familiar with the code used by my neurologist; but I am sure when you see your neurologist, she will be able to explain the coding to you. I have never had any of my visits or the walker I was prescribed, turned down by my insurance, which is Medicare.
I was happy to read the Gabapentin is helping you; I think this is the one medication most people take with the greatest success. I think I may have mentioned to you, I am very sensitive to medications and that is one I am unable to tolerate.
As for a wheelchair, I can see that in my future, but have yet to even use my walker! I got one like the one used by my neurologist, which is too heavy for me to try to lift and get into our vehicle...so, it sits in the garage.
IF, and I say IF, I must get a wheelchair, I will deal with that at that time. I guess I STILL think, and feel, I can do all the things I used to do; yet, if I am honest with myself, I know that is no longer factual.
My ability to stand is almost nil and walking is very difficult for me at this point. I don't go out as much as I used to; it is just too exhausting to me at this point. I do try to go out with my husband when doing some shopping, but not as much as I used to do.
It is a very 'tight rope' we walk; balancing to keep from falling...yet we continue to try.
Keep up the good work and positive attitude. You are an inspiration to all of us.
Betty
To answer your question....I am not familiar with the code used by my neurologist; but I am sure when you see your neurologist, she will be able to explain the coding to you. I have never had any of my visits or the walker I was prescribed, turned down by my insurance, which is Medicare.
I was happy to read the Gabapentin is helping you; I think this is the one medication most people take with the greatest success. I think I may have mentioned to you, I am very sensitive to medications and that is one I am unable to tolerate.
As for a wheelchair, I can see that in my future, but have yet to even use my walker! I got one like the one used by my neurologist, which is too heavy for me to try to lift and get into our vehicle...so, it sits in the garage.
IF, and I say IF, I must get a wheelchair, I will deal with that at that time. I guess I STILL think, and feel, I can do all the things I used to do; yet, if I am honest with myself, I know that is no longer factual.
My ability to stand is almost nil and walking is very difficult for me at this point. I don't go out as much as I used to; it is just too exhausting to me at this point. I do try to go out with my husband when doing some shopping, but not as much as I used to do.
It is a very 'tight rope' we walk; balancing to keep from falling...yet we continue to try.
Keep up the good work and positive attitude. You are an inspiration to all of us.
Betty
Re: Getting a diagnosis
After 12 years of suffering with this disease, I finally went to get a diagnosis. The Dr I was lucky to go see was Dr Torres-Russoto in Omaha. I drove 8 hrs to see him and he and his Assistants spent 3 hrs with me. Very extensive questioning and testing. No machines just a lot of checking my movements and standing and reactions to different scenarios. I was so happy to finally have a diagnosis even tho it is such a dibilitating disease at least I know for sure. He said that he is going to be getting together a research group and that whether I chose to be a part of it or not he would give me the best care possible. I was relieved, my family is happy that I now have some hope.
I have been walking for just over 4 months every day. I am now up to 4-5 miles a day and am now training to do a half marathon. I decided that I have no control over this disease, but I do have control over what I chose to do today. So I chose to move as much as possible, to go for daily walks, to play with my grandchildren and go to see them in all the events in their lives. I was not able to obtain employment so I began to watch children in my home and opened a licensed day care. I love it. the children don't know that there is anything wrong with me and keep me very busy. I am able to accomadate myself in my home and know how I have it set up and why. I am loving life and pray that the progression of this disease is slow.
I have been walking for just over 4 months every day. I am now up to 4-5 miles a day and am now training to do a half marathon. I decided that I have no control over this disease, but I do have control over what I chose to do today. So I chose to move as much as possible, to go for daily walks, to play with my grandchildren and go to see them in all the events in their lives. I was not able to obtain employment so I began to watch children in my home and opened a licensed day care. I love it. the children don't know that there is anything wrong with me and keep me very busy. I am able to accomadate myself in my home and know how I have it set up and why. I am loving life and pray that the progression of this disease is slow.