How is everyone?

This is the "main" forum that contains new introductions and other topics. A place to talk about your experiences, thoughts and advice.

Moderator: gloria

ALC
Posts: 17
Joined: Fri May 09, 2008 8:29 pm
Location: Connecticut, USA

Re: How is everyone?

Post by ALC »

Hi Mike,

I appreciate your post very much - even if what you have to share is not "upbeat". It is good to know we are not alone. I have also debated about typing up a "downer" post. Because this link is so large, I started a new post and told my story about dealing with OT on a recent trip to New York City. Lots of people viewed - only one response. Doesn't really encourage one to keep posting...

Amy
Chris
Posts: 91
Joined: Sun Dec 26, 2004 2:28 pm
Location: Okanagan Valley, British Columbia, Canada

Re: How is everyone?

Post by Chris »

Hi Mike and everyone else
You must have been reading my mind. I was just thinking yesterday that I should really post something again....haven't even checked the site for awhile. I completely understand how you feel. I have been feeling quite discouraged lately as well and I expect our awful winter has had a lot to do with it. We have had a lot more cold temperatures and snow than usual for this part of British Columbia....walking has been quite treacherous even though I have been using walking poles to try and keep my balance somewhat. I didn't really feel like posting as I haven't really got much to say......my tremor seems worse lately as well and daily chores are quite difficult. Thank goodness I have a really great husband or nothing would ever get done. He does encourage me to go out which does help as well but some days all I really want to do is stay in bed with the covers over my head. Not a great way to spend our retirement years......not what I had envisioned years ago anyway. Hope this isn't too much a downer......
Spring is definitely coming and I know I will feel better when it finally does arrive. We have a lot of things happening in the next few months so I really need to get my act together and get on with my life. I too have a wheelchair now which I find really helps a lot. I do get some strange looks though when I push it around and then sit down to talk or look at things. I find I like the chair over a walker as I have the option of staying seated to move around if the situation warrants it.
Take care everyone
Chris :)
patty
Posts: 43
Joined: Tue Apr 26, 2005 3:11 pm
Location: North Warwickshire UK

Re: How is everyone?

Post by patty »

Hi Mike, glad you are back on the scene again, quite a good short story that although sorry to hear about your dog.

I wonder if you watched the Horizon programme last night (3rd February) if not it can be watched on BBC iplayer, very interesting especially towards the end. I don't think I would be allowed to say what it was about on this forum, but I have written to Dr Peter Bain, Consultant Neurologist in London whom I saw in 2005 re my OT, to see if there are any clinical trials going on in my area, I would certainly be willing to put myself forward for such a project, it just maybe something to help our condition in the future. Hope you are able to watch it and let me know what you think.

Any way welcome back, you always give us a smile or three.

Take care, Patty
gardenwoman
Posts: 20
Joined: Fri Jan 27, 2006 12:04 pm
Location: Cheshire, UK

Re: How is everyone?

Post by gardenwoman »

Hello Patty & all
I too watched the Horizon programme last night and had a similar thought. I mentioned the subject to the Neurologist last time I went and they are supposed to be checking it out for me. Hopefully (but unlikely) I will get a useful answer when I next go back in about 3 months time. Otherwise I feel like giving up with the Neurology, they have nothing to offer me except drugs that give me such unacceptable side effects they are no use. At the moment I feel that I might just tell them that. I have had a couple of falls and the most recent one resulted in a broken arm and wrist. On a more positive note, I have now got a "shop-a-seat" trolley that is quite a help now that I have got used to using it and begun to cope with the embarrasment of having to use it & the comments people make. I definitely am less exhausted when I get home after a trip out with it.
take care
patty
Posts: 43
Joined: Tue Apr 26, 2005 3:11 pm
Location: North Warwickshire UK

Re: How is everyone?

Post by patty »

Dear Gardenwoman, thank goodness for your response, I was feeling a little nervous about this subject but its not the first time I have heard about positive results for spasticity, as they call it, with this drug, I will let you know if I hear from Dr Bain, we just have to keep trying all avenues to fight for our cause.

Take care and thanks again.
jolarson
Posts: 77
Joined: Fri May 02, 2008 5:49 pm
Location: orange county, ca. usa

Re: How is everyone?

Post by jolarson »

Hi to everyone. I too have been slow about posting. I guess we are all going through the same symptoms of this disease which is feeling down, depressed at times etc. I check this board almost daily just because it keeps me from being depressed knowing that others have almost identical problems. I have tried different medications but the side effects were so bad that it wasn't worth it. I only use clonazepam occasionally which seems to take the edge off the anxiety when I am out socially (as long as there is a stool or chair close!!). I am now picking my spots when I do things socially. Large gatherings where everyone is standing and there is no place to sit is definitely out for me now. If someone thinks I'm anti-social, so be it, I can't be in a situation where I'm panicking because I can't stand! Which is another problem because I love to be with people. You all make my day when you post and ALC don't stop posting because you didn't get any response, we are all enjoying reading about your visit to NYC knowing what strength you had even to attempt such a trip. I also might add to those of you that are married..........be so grateful because you have someone who is there for you always. Being a widow I have to make sure I'm very careful around the house. I've said before that my house is called "the house of stools" because everywhere one looks there is a spot to sit, even in my closet, bathrooms etc. The past few months it seems my condition worsens with any idea of standing for even a few seconds is out. Also having to make small moves while standing holding on to something is extremely difficult and causes terrible shaking. But I have a friend with Parkinson's and that shakes me back to be appreciative of what I can do. Have to keep smiling, have silly times and laugh alot.
Chris
Posts: 91
Joined: Sun Dec 26, 2004 2:28 pm
Location: Okanagan Valley, British Columbia, Canada

Re: How is everyone?

Post by Chris »

Hi Jo...nice to hear from you. I find it very interesting that you mentioned doing small moves while holding something brings on the shakes quite badly. I too find that especially when I am cooking and having to fill a pot with water and turn and put it on the stove. We have redone most of our kitchen so I can reach easily while on my stool but the times I have to stand to reach or move something I find I really shake badly....basically all over. I have noticed this more so in the last few months. My tremor also seems to be getting much worse especially after I have gone on a long walk or exercised. That seems to set me off more for the rest of the day.
Don't give up going to any public events especially if you are a people person. Maybe you could see about buy or renting a wheelchair for some of these times. My husband bought me one last fall because I refused to attend such events with him.....I got tired of sitting off on the side all the time. I find it really helps as I can manouver through the crowds quite easily and people generally pay more attention to you and include you in the conversations. I can wheel myself around quite well now but usually a friend or two will help. My husband is usually off doing his thing. I find I am getting quite good at holding a glass of wine and wheeling my chair...quite a sight at times. :D
While we are on the topic of attending events......last Christmas I was attending my grandchildren's school Christmas concert. Seeing how I would be sitting I didn't bring my chair.....then it happened. At the beginning we all stood to sing our national anthem. In the past I have been able to stand for most of it.....not this time. My daughter and son-in-law where on either side of me....immediately held on to me when they could feel me starting to shake....but even with that I could not even last for half of it and had to sit down. I was quite surprised at this and it made me realize how much worse my tremor had become. Needless to say I was a little bummed out after that for awhile as it seemed to be another thing I couldn't do.
Oh well....life goes on and we have to make the best of what we have.
Take care of yourself and keep posting.
Chris
bonnie
Posts: 3
Joined: Sat Nov 01, 2008 8:45 pm
Location: Columbus, Ohio

Re: How is everyone?

Post by bonnie »

Hello,
My name is Bonnie, and I am newly diagnosed with OT. I was initially relieved with this diagnosis as I was convinced that I must have a brain tumor or something. I am a nurse, and imagined all kinds of things. After finally getting into a neurologist and having negative MRIs, she said that I have "shaky leg syndrome". No kidding. I had already found this site in an effort to find some answers and was so glad to have some knowledge behind me.
I have been dealing with this for over a year, but did not know what to call it or what was going on. My family doctor was not much help and it took forever to get in to a neurologist. I appreciate all of the suggestions that I have read here.They have been extremely helpful. I wish I had put a stool in the shower months ago!! This has really helped. I have stools in the bathrrom, the kitchen and got a fold up cane for my purse. The cane is not a lot of support. I thought it would me wait in line etc, but I find those things are still too difficult most of the time.
Thank all of you for sharing here. Yea to all, especially Gloria!
I saw that Kaylie was successful is her application for social security. (Thank you for sharing)I am considering applying. I am currently working, and have a job that allows me to sit some of the time, but not all. I am really struggling with the time when I cannot sit. I lean, sway etc., but it is becoming physically and emotionally difficult. Has anyone else been successful with social security?
Thank you again,
Bonnie
Lorie M
Posts: 50
Joined: Sun Dec 18, 2005 12:40 pm
Location: MN

Re: How is everyone?

Post by Lorie M »

Does anyone have neuropathy of the feet? Burning or tingling and or numbness on the soles of the feet? I have developed that in the last few months. My family doctor wanted me to ask you guys if it goes along with OT. I have not read that it has but just curious to ask. I also saw Dr. Matsumoto in Rochester again. He is doing research there. I was in a MRI machine for 2 hours and about ready to scream when they said. "All done." I have not heard any results but he was pleased with the "pictures" they got of my brain. Good to hear it is not empty up there.
Lorie M
Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: How is everyone?

Post by Betty »

Hello to everyone!

I haven't posted as often as I have in the past; but did add a question for Peggy to give to Dr. Russotto.

Mike, so sorry to hear of the loss of your pet; I think all of us who are pet lovers can relate. I do check this site often; and have also found most have been writing less. Maybe it's the weather; maybe it's because we are a bit "down"; but Mike, even when you are down, you find something positive about the negative.

I don't know if you remember me, but we met in Rochester at the Mayo meeting. You are a funny guy and had everyone laughing. Keep that sense of humor and share ALL your thoughts with us ~ good and bad.

Also, I can relate to everything everyone has written regarding not wanting to post, because I feel I have nothing positive to add either. However, it is important for all of us, especially for new people who have just found this site, to realize we ALL have our good and bad days. No, we are not always positive all the time; but we try.

I think it's okay to say, "I'm having a bad day"; and tell what is going on so others will realize they aren't alone. Most of us have experienced the exact thing they may be experiencing. I, too, know I am progressing much more quickly than I had expected. It is very difficult for me to stand for more than a few seconds, and even walking is difficult for me now. We have tile in many areas of our house and I can trip over the grout! I know it is because I am not picking my feet up as I should, but it is getting more and more difficult to lift them.

Many of you have stated you now use a wheelchair; I haven't allowed myself to go there yet! I do have a cane in the car and use it if I am alone. Not that it is that helpful ~ it isn't ~ but it does make others aware I have a problem and they are more careful around me.

Amy....you wrote:

I appreciate your post very much - even if what you have to share is not "upbeat". It is good to know we are not alone. I have also debated about typing up a "downer" post. Because this link is so large, I started a new post and told my story about dealing with OT on a recent trip to New York City. Lots of people viewed - only one response. Doesn't really encourage one to keep posting...

Amy


Amy, I tried to find your post on your trip to New York City, but couldn't locate it. When did you post and under what title? I would like to read it. I understand how difficult it is to travel; I have the same problems. I think all of us can relate to that and if I could find your post; I would respond.

Well, enough for now; looking forward to hearing from more of you.

Betty 8)
linzi
Posts: 18
Joined: Thu May 04, 2006 12:56 pm
Location: London, England

Re: How is everyone?

Post by linzi »

Hi Lorie M

I was interested by your quetion re neuropathy of the feet. I have noticed that after standing for a while, where I am unable to move around very easily, I get very numb feet. I had never linked this to OT before but since you have asked this question I must say that yes I do! Also i have noticed that i somethimes get tingly feelings in my arms. When I get it in my arms it feels as if they are very heavy and moving them seems to require more concentration.

Hope this helps

Lindsay
Lorie M
Posts: 50
Joined: Sun Dec 18, 2005 12:40 pm
Location: MN

Re: How is everyone?

Post by Lorie M »

Lindsay,
I have not experienced numbness but burning and tingling which makes me want to scratch my feet. From what I have read it seems like numbness usually goes along with it. I do not have it all the time and sometimes I get a few seconds of the tingling in my feet and hands and disappears. Dr. has done some blood work but did ask if I knew of anyone else with this condition in my OT group. He said it may be related to a vit B deficiency. I have taken vit B for years. He also said perhaps I have not been absorbing it well. We will see!
Thanks for responding. (Seems the Queen and Michelle have gotten along OK. At least in our news.)
Lorie M
Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: How is everyone?

Post by Betty »

Hi LIndsey and Lorie,

I thought I would add my experience to your questions regarding neuropathy; I do have it in my feet also; especially after trying to stand. My feet become numb and do burn; and it makes it more difficult to walk. In addition to making walking more difficult, I have problems lifting my feet. By the end of the day, I find I drag my feet and stumble more easily.

Do either of you, or anyone else reading this, have problems with lower back pain? I have had it off and on for some time, but lately it is constant. I guess my "core" isn't as strong as it should be. I have tried exercise programs; and the last one only made it worse. I was doing VERY gentle exercises and stretching; but it hurt my back, so I am not doing anything presently.

Lorie, I enjoyed reading your last comment regarding the Queen and Michelle Obama. From the pictures I saw, they seemed quite comfortable together.

Betty
ALC
Posts: 17
Joined: Fri May 09, 2008 8:29 pm
Location: Connecticut, USA

Re: How is everyone?

Post by ALC »

Hi all,

I just lost a long post I'd typed to you - I'll try to remember now what I said...

First thanks to Betty and jolarson for your kindness and support. Now that I know that others do read and want to hear stories that are not just upbeat, I will try to write more. As a devoted gardener with spring arriving and my condition worsening every year, I've got lots of material. Betty, my post is from last December and it's in the forum under topics. It's called "My trip to NYC" The "how are you doing?" link is under announcements at the top of the forum page. Topics are in a separate category underneath announcements.

About the burning feet, I had that and a horrible burning tongue for a long time as well as other symptoms that no Dr. could figure out. To make a very long story short I have a cautionary tale about vitamin B. I took an over the counter multivitamin for many years that was formulated for women. It had 400% of the daily requirement of B-6. Since my journey to diagnosis took me to Rheumatologists, Endocrinologists, Allergists, Gastroenterologists, etc. I've had what feels like gallons of lab samples taken. One Dr. suspected vitamin B deficiency and when I was tested my labs showed B-6 overdose. B vitamins are supposed to be water soluble so that whatever is not absorbed is eliminated, but for some reason my body was storing it. The Dr. at Yale had never seen this before or heard of it (that sounds familiar, huh?) Normal levels are (if I remember correctly) 20-30 and mine was 150.

If you do a web search on vitamin B-6 overdose you'll see that symptoms include burning and tingling in the extremeties. It might be worth having the test done. They'll say it is impossible, but it happened to me. It has taken me years to recover since stopping the vitamin but slowly I have improved with those symptoms. For me, the burning improved but not the OT. I don't know if OT and B vitamins and burning feet are connected, but I thought I would share my story in case it might help someone.

Amy
linzi
Posts: 18
Joined: Thu May 04, 2006 12:56 pm
Location: London, England

Re: How is everyone?

Post by linzi »

Hi Amy & Betty
Interesting that you mention vitamin B6 overdose. I have also read about the effects that too much vitamin B can cause, one being tremor and shakiness. I used to take vitamin B6 as advised by a doctor for PMS symptoms and since reading the article about the negative effects, have stayed away from them.
With regards to back pain, I get lower back pain but have also started to get very bad back painin the centre of my back between my shoulder blades after standing for a while. I noticed it last weekend when hanging some clothes on the line and also when unpacking a suitcase. I agree that it feels like the core stability muscles. So horrible when it happens which is basically when I am standing and using my arms to carry out tasks. Not overly pleasant!!
Anyway keep plodding on :)
Linzi x
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