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

Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: How is everyone?

Post by Betty »

You are absolutely right, Jo. I don't think any of us enjoy small or crowded spaces. I know I don't, and always look for a place to sit.

I feel one of the reasons, other than what you described is...if someone should bump me, I haven't the ability to keep myself from falling ~ but I haven't fallen yet! I am very careful to always make sure I am not in any 'open' spaces; I want to be able to have something to grab or hold on to. It does make it difficult to socialize under those conditions....but we find different ways of coping with all situations.

Betty
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Maureen and All: I remember that you have included in your postings at times that you regret you have never met another OT person. However, since you live in the UK I have a suggestion. I just checked our registered membership list and counted 31 registered UK members. Perhaps if you e-mailed some of them you might find a few OT friends within a reasonable distance from you. All you have to do is, login in first , click on Members, and that will take you to the membership list of 32 pages. Look for someone registered from the UK , click on their name which will take you to their page where you can send them an e-mail. From the 31 listed registered people you may find someone in the next town who knows ! Good time to do this, Winter is coming and you will not be tending your garden. Best, from Gloria, NJ, USA
Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: How is everyone?

Post by Betty »

Maureen, as usual, Gloria is so right. If you could find someone near you and make arrangements to meet, it would give you the opportunity to actually SEE someone else JUST LIKE YOU; and talk about all the things you have in common.

The first person I met with OT was Gloria. What a wonderful experience to actually meet someone else with OT and to be able to talk and have some who truly understood what I was experiencing.

Since we met many years ago, I have had the opportunity to meet several other women who were passing through Florida. I also had the opportunity to meet many others at the first meeting of the OT GROUP at the Mayo Clinic in MN.

I do hope you are fortunate enough to find someone close; give it a try.

Betty
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re:How is everyone?

Post by gloria »

This message is a reminder for a group of OT suffers that have been reading the website but have not participated by registering as a member of the site. It is a quote from a recent posting I made on my ongoing “Experience Page” .

“Thankfully we have grown to be an amazing group of members and friends but there are still some people out there that benefit from the information on the site but do not register or contribute. If you are new to the site or someone that never registered please do and add your location to your profile. ( only state or territory and country is necessary, not full addresses.) The more OT people that stand up to be counted the stronger we will be! Please take the time now to register and participate, everyone benefits from an active OT community.

Working together, Gloria
MikeS
Posts: 110
Joined: Wed Mar 19, 2008 2:51 pm
Location: Marbella Spain

Re: How is everyone?

Post by MikeS »

So its been sometime since I posted here .I thought Id give you an update .
Lets start with my teddy bear legs Im lucky it seems because I have ordinary OT which means its only in my legs.I walk every day but can still not stand still for more than a few seconds but you guys all know that feeling I will not go anywhere that involves standing without my wheelchair I hated using it to begin with because..well again you know why but without it its impossible to travel and with it traveling is not a problem at all in fact you get some pretty good treatment .
I have been keeping in touch with Gloria and she is still my inspiration .
Ok the good news my daughter Sarah got her masters in forensic psychology and is now doing her phd so I am a very proud dad and thank my lucky stars for having such a wonderful daughter she is the light of my life
The main reason I haven't been posting is that I have been going back to England every 2 weeks since Jan 2011 because my mother has been very sick and she passed on Feb 25th,which is also Sarahs birthday, You know its going to happen but its still so terrible to see a loved one suffer but she is at peace now and there is no more pain
What the future holds for us OT suffers I don't know but thanks to Peggy and the crew we have managed to raise some funds for research and who knows maybe one day there will be a magic pill.
I don't do facebook but do Tweet on twitter I would like as many of you as you can to join and follow me because I am going to try and get out illness known I already have over 500 followers and am trying to get more Maybe get an OT account ?
Ok thats enough for now if you read this and dont get bored Ill write some more soon
Keep Smiling
Mike :)
Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: How is everyone?

Post by Betty »

Hello Mike!

First, please accept my deepest sympathy on the loss of your beloved mother. As you said, you know it is coming, but it's never easy. My thoughts and prayers are with you and your family.

It's good to hear from you again; you have been missed. It's good you have been in touch with Gloria; I think she is an inspiration for EVERYONE! She is an amazing lady and one I am priviledged to call my friend.

Now....for your teddy bear legs; at least your tremors continue to remain in your legs only. I think that may be unusual, but lucky for you. As you said, standing times are very difficult; my standing time is nil at this point and my tremors do affect my whole body, but I continue to try to stay positive and do what I can.

I can only imagine how proud you must be of your daughter, Sarah. It does make us proud when our children do well.

I don't do Facebook or Twitter; so I will be unable to Tweet you. Perhaps I should learn, especially since you have such a following at this point; and trying to get OT out among those who are following you would be great!

Again, so good to see you back on the forum.

Betty
Lake of the Woods
Posts: 264
Joined: Fri Dec 29, 2006 12:10 pm
Location: Kenora, Ontario, Canada

Re: How is everyone?

Post by Lake of the Woods »

Good to see you back Mike - great to hear about your daughter and very sorry to hear about your Mum.

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

Re: How is everyone?

Post by Lorie M »

Mike,
Sorry for the loss of your mother. Regardless how old one is it is difficult to lose a mother. Congratulations to your daughter on her accomplishments. I do not tweet but do Facebook and I have met a couple of OT sufferers. I try to get the word out about the forum.
My tremors seem to be getting somewhat worse but I am getting older so I suppose that is to be expected since everything else is more difficult. Good to hear eh?
I am about to take the bike out to ride a few minutes since it is actually a nice day in MN today. My husband had a new hip last year so the bikes stayed in the garage all summer. That may be why tremors are worse since I had less activity for a long while. My husband's fault right??
Take care and good to hear from you!
Lorie M
MaureenB
Posts: 59
Joined: Mon Mar 22, 2010 4:24 am
Location: Southport UK

Re: How is everyone?

Post by MaureenB »

Hi Mike
what a very mixed year for you,...like everybody else in the group states ,welcome back ,teddy bear legs, you have been missed.

Regards MaureenB
carlahpmey
Posts: 3
Joined: Thu Oct 28, 2010 10:47 pm
Location: Sacramento Ca

Re: How is everyone?

Post by carlahpmey »

Looks like it has been awhile since a posting here so here is one. I have had OT for a few years. I experience the tremors, not being able to stand for long, shower difficulty due to standing for long, problems with walking on bleachers which is difficult since son plays football, standing in lines is one of the worst problems. I love to shop and appear a normal healthy 47 year old woman which is deceiving. I can't take loading a cart or standing in lines..even at Kaiser for medical appointments. How can we make it so we don't have to stand in these lines with our disability? This needs to change. I have an injured lower back now and nerves are pinched so it hurts to sit too long now too. Working full-time as an HR professional is becoming too much for me. I don't know what to do??? Any help is appreciated. I'm just dealing with it. Carla in Sacramento CA
Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: How is everyone?

Post by Betty »

Hello Carla,

I think you will see the symptoms you have are the same for all of us ~ some more than others. It is difficult to stand, especially in a line. For me, my tremors become much worse and the longer I stand, the more I tremor.

I think all of us appear to be a normal healthy person ~ at least while sitting; it is when we try to stand and walk we have our problems. Regarding an answer to what one can do to help when standing in a line...many people have one of the folding cane/stools and use that when in line. You have a place to sit and your tremors will stop.

You have a double problem ~ your back along with OT, not easy when you are working a full time job. I have no suggestions regarding what you can do, perhaps someone else will, only you can make that difficult decision; and I hope you will find an answer soon.

Do keep us informed; we do care.

Betty
golfnut
Posts: 192
Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: How is everyone?

Post by golfnut »

Hello everyone,
I am experiencing a new feeling - not alltogether positive. It's a sort of numbness in the legs. It feels almost as if "they re not really there". The legs feel tired and worn as well, but this new numbness is quite a strange sensation. And a bit worrying really.
Has anyone felt this?

a worried nut
Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: How is everyone?

Post by Betty »

Hello Anne,

Something new for you....not new for me. I do have a numbness in my feet and at times my legs. For me, they also feel very tired and weak. This usually happens when I have been standing/leaning for too long ~ as in a social situation. My legs and feet will feel numb and I have problems getting my legs to move.

It is a strange sensation, and makes it difficult to get the legs to move. I hope this is something which will be short lived for you.

Do keep us posted.

Betty
HelenAZ
Posts: 2
Joined: Sat Apr 14, 2012 2:04 pm
Location: Surprise, Az

Re: How is everyone?

Post by HelenAZ »

Hello everyone, I came across an article from the New England Journal of Medicine which reports of a man with orthostatic tremors like us, but was deficient of Vit B12. The tremors were cured after being treated with a series of Vit B12 injections.
Here is the link to the article http://www.nejm.org/doi/full/10.1056/NE ... 3303421318

Helen
Di Di
Posts: 149
Joined: Tue Jan 24, 2012 5:03 am
Location: Wellington, New Zealand

Re: How is everyone?

Post by Di Di »

Hi Helen ...
thank you for that ...have read and copied it,next visit will talk it over with my Docter,I dont suppose oral daily doses of Vit B12 would be enough ....Helen are you planning to do anything about it ?
If so would be most interested to hear how you get on ....anyone else out there heard about Vit B12 being helpful ?....DiDi NZ
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