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

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

Re: How is everyone?

Post by gloria »

To All: This is one of my favorite places on the Forum. Mike started it by asking "How is everyone?" It is a request to hear from our OT friends giving updates how they are traveling thru life with OT. ALL of us have created this OT Community. It is a community of great strength and information of our disability. It is a place where it explains to the WORLD what it is like to live with OT. Life is changing for me because of aging and other issues that excerbates my OT. I have learned to recognize them and manage them as best I can. It just takes more effort and time to do things and by 4' Oclock is is time to kick of the shoes. Seriously, do any of you feel walking bare foot is more comforting? Gardening remains important in my life although having to sit on a stool makes it a more difficult and time consuming. Nonetheless, I'm out in Nature which I love unless it is hot weather and no matter what I'm doing whether it is gardening or anything else I can NOT tolerate heat. Do any of you have the same experience with heat? I do believe that temperature is a factor with OT tremors from both ends, heat disturbing but cooling down legs after exercise helpful.

What is your update ?, Gloria
LMP1
Posts: 42
Joined: Thu Sep 05, 2013 1:15 am
Location: Kaikoura, New Zealand

Re: How is everyone?

Post by LMP1 »

Hello Gloria
I seem to be the opposite to many here with the heat helping me considerably cope with OT. It was because of the cold and damp of New Zealand's outer Islands, the Chathams, where I had been living for eleven years, that I moved to a much warmer and drier part of NZ, namely Blenheim at the top of the South Island. My husband still lives and works on the Chathams, visiting Blenheim about every three weeks when he is on Mainland NZ for business meetings. This has been happening since the beginning of the year and we seem to be coping with the big change to our 37 year marriage. We also noticed how much better I was when we had a trip to South Africa in late 2009 where the temperatures were again much warmer.

I still know my limits and my body quickly tells me when I have overdone it, but I definitely believe the warmth of Blenheim's mostly very settled weather has been of benefit to me. I have even been doing some gardening but really pay for it the next day, so it's a slow process. Because of Blenheim's warmer weather, I also find going barefoot keep my feet cooler and comfortable.
Regards to everyone, Lynette
GraGra
Posts: 11
Joined: Fri Sep 06, 2013 8:38 pm
Location: Dapto NSW 2530 Australia

Re: How is everyone?

Post by GraGra »

Hi everyone....I am a fairly new member and whilst finding my way around the site I came upon some posts of how you found out you had OT. I was saddened that all of the stories said that it took years and some years and years for them to be correctly diagnosed. After reading these stories I feel very fortunate that I was diagnosed so quickly. After about six months of my symptoms thinking that I may have had Parkinson's I went to my GP whom then sent me for all the tests, the last which I think was the 5th, the neurologist diagnosed my OT first visit.
I have just read the posts about heat or cold having an effect on OT. Personally I have not noticed if there has been any difference to me in the heat or the cold but I will certainly monitor it from now on. Gloria does it effect everyone or only some? Also in my last post I mentioned that a moderate amount of alcohol takes away the shakes and helps with my balance. Do you know if anybody else has tried this?....Cheers to you all....Graham.
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 Graham [GraGra]
you ask about alcohol ?...I`m on no drugs by choice [yet] but find a glass of wine helps if I`m faced with a crowded outing,which I know will give me grief .
I find two glasses over an evening is my limit ....as the tremors kick in big time the next day if I go over that , as tempting as it is :) ......................if you read up other peoples writing on the forum you will find many hints on ways of coping ...welcome to our world ...didi NZ
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Hi Graham and DiDi: If you wish to get a better idea of responses from some of our OT friends about alcohol I suggest that you go to the top right hand corner of this page find Search and type in alcohol ( login first), I personally do not like hard liquor but wine I can manage and just drink it socially. I can't see how hard liquor can help with our balance problems. DiDi you are great at learning skills that help you get thru uneasy crowded situations, they are generally very threatening to most of us. In this area of discussion I find that I still worry about preception from people as I get up from a table and try to get moving to leave a restaurant feeling people are looking at me and saying " must have had too many " although I have had none. After all these years I still cannot shake this feeling of public preception. As always , Gloria
cinsim1@yahoo.com
Posts: 22
Joined: Tue Jun 12, 2012 10:27 pm
Location: Carlsbad, CA
Contact:

Re: How is everyone?

Post by cinsim1@yahoo.com »

Hi everyone,

Gloria, I can relate to being out in public and people giving strange looks when I'm trying to maneuver around tight areas. Today, I was trying to go through the racks and racks of bras, trying to find my size. I finally just grabbed a pile of them and sat on the floor searching for what I needed. I wish more dept. stores would provide chairs in various areas, but probably not going to happen anytime soon.
I'm going in next week for breast cancer surgery, so maybe I won't need to shop for bras anymore (I really hope I get to keep them!), but that's another health forum!!
Love hearing from everyone,

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

Re: How is everyone?

Post by gloria »

Hello Cindy: Sorry to hear that you are going for breast surgery next week and hope all goes well. I have been thru the same situation and I'm now a 5 year survivor. In my case I was confident from the beginning that everything would be OK and feel you will be too. Along with surgery & radiation I took a five year pill that I cheated on taking. I went on a diet of fruit and veggies basically and had a very positive attitude. Being more frustrated with our daily OT routine continued to get my main attention.
Wishing you a successful surgery and quick recover time. As always, Gloria
GraGra
Posts: 11
Joined: Fri Sep 06, 2013 8:38 pm
Location: Dapto NSW 2530 Australia

Re: How is everyone?

Post by GraGra »

gloria wrote:To All: This is one of my favorite places on the Forum. Mike started it by asking "How is everyone?" It is a request to hear from our OT friends giving updates how they are traveling thru life with OT. ALL of us have created this OT Community. It is a community of great strength and information of our disability. It is a place where it explains to the WORLD what it is like to live with OT. Life is changing for me because of aging and other issues that excerbates my OT. I have learned to recognize them and manage them as best I can. It just takes more effort and time to do things and by 4' Oclock is is time to kick of the shoes. Seriously, do any of you feel walking bare foot is more comforting? Gardening remains important in my life although having to sit on a stool makes it a more difficult and time consuming. Nonetheless, I'm out in Nature which I love unless it is hot weather and no matter what I'm doing whether it is gardening or anything else I can NOT tolerate heat. Do any of you have the same experience with heat? I do believe that temperature is a factor with OT tremors from both ends, heat disturbing but cooling down legs after exercise helpful.

What is your update ?, Gloria
GraGra
Posts: 11
Joined: Fri Sep 06, 2013 8:38 pm
Location: Dapto NSW 2530 Australia

Re: How is everyone?

Post by GraGra »

Hi Gloria....After reading your post on temperature having an effect on OT I have noticed I've been worse in the warmer weather, I had not noticed until I read your post, thank you.
I agree with kicking the shoes off I go barefoot all the time whilst inside my home if it's not to cold. In fact I'm barefoot at this moment as it is spring in Australia....Cheers Graham.
GraGra
Posts: 11
Joined: Fri Sep 06, 2013 8:38 pm
Location: Dapto NSW 2530 Australia

Re: How is everyone?

Post by GraGra »

Di Di wrote:Hi Graham [GraGra]
you ask about alcohol ?...I`m on no drugs by choice [yet] but find a glass of wine helps if I`m faced with a crowded outing,which I know will give me grief .
I find two glasses over an evening is my limit ....as the tremors kick in big time the next day if I go over that , as tempting as it is :) ......................if you read up other peoples writing on the forum you will find many hints on ways of coping ...welcome to our world ...didi NZ
GraGra
Posts: 11
Joined: Fri Sep 06, 2013 8:38 pm
Location: Dapto NSW 2530 Australia

Re: How is everyone?

Post by GraGra »

Hi Di Di....I agree with over doing it you pay for it the next day. My main choice for a tipple is wine, I have the occasional beer and have a gin and tonic before dinner each evening and then 2 or 3 glasses of wine with dinner. It is about double what you have but has no effect the next day. At times when I have been out to lunch or dinner with friends and have over indulged I have paid big time the next day, so now I set a limit and stick to it.
Finding this site has been very uplifting and informative, for instance I have found out that OT affects most peoples hand writing....I find it very difficult to write my signature, so I carry a letter in my wallet from my Neuro explaining the problem just in case my signature is not accepted, it has not happened yet but as I get worse I'm sure it will.
Thank you Di Di for responding....Cheers Graham.
golfnut
Posts: 184
Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: How is everyone?

Post by golfnut »

Hello everyone!
I think this is a thread read by many so I take the liberty to post a suggestion for you to try.
:P

I visited my chiropractor the other day and we spoke about standing. He mentioned to me that he is using a different posture while standing in order to relieve his back. He mentioned that this suggested posture means that the muscles in the bum (sorry) and the core muscles take more of the strain than the legs and back. Worth trying I thought..

So what is this posture - is it difficult?? Not at all - super simple!
When you stand up, shift your heels a bit outwards. This means your feet will not be straight forward or with toes outwards, but the opposite: the toes are pointing towards each other slightly.. Try it.

I felt that this actually meant a different feeling in my body. Standing like this (like a duck?) I have a vague sensation that my brain - used to kick in tremors - is a bit confused by the use of other muscles.. and I imagine it blocks the tremors a little bit.
I'm not at all sure if this helps, but it is so easy to try so I thought I post it here...

And - how I am? Quite well thank you. Still no drugs, still with less tremors than before (read my diary for more news).

Take care everyone!
the golfnut
MikeS
Posts: 110
Joined: Wed Mar 19, 2008 2:51 pm
Location: Marbella Spain
Contact:

Re: How is everyone?

Post by MikeS »

Hi Everyone
As most of you know I started this post several years ago and am so pleased that all my ‘teddy bear’ legs friends all come here to read and give updates so here is mine
Sorry I have not written sooner but as some know last year was a nightmare
I won’t bore you with the details but in August last year my kidneys decided to pack up due to severe kidney stones Anyway after 8months of treatment and 7 stays in hospital I’m back to normal.......not that I have ever been normal.

So this year has been a great for OT with all the meetings and interest being shown unfortunately I couldn’t make the Omaha meeting but hope I will be able to make the next one and meet up with some old friends and hopefully make some new ones. I am in regular contact with Gloria who continues to be my inspiration.

Ok a little more personal stuff I have finally retired completely (for now) and still play po ker 8) to keep my mind busy If doing nothing was a sport I would definitely play of scratch .
My daughter Sarah is in her final 2 yrs of her PhD in forensic psychology and I am very proud of her, have been truly blessed there.

I have been reading some of the posts on here and I love the varied things everyone experiences.
I noticed the one about having a few drinks, that’s not for me anymore I haven’t had any alcohol for about 17 years, I have enough problems trying to stand up sober!!!!

I read Golfnuts post re standing I have not tried that yet but I will. When I have to lean on something to get balance it helps me if I cross my legs ......worth a try what’s the worst that can happen ...you fall over!

I am also interested in seeing all the different supplements, drugs some homeopathic and some chemical that everyone take, again I do not take anything for my OT .Walking is the only regular exercise that I do .I still use a wheelchair for any major shopping trips I do and of course when travelling, airports can be a nightmare at the best of time but going to the front of all the lines has its advantages.

I always carry my OT cards which explain my condition to the people I push in front of and has saved me from getting into many arguments, still get the funny looks as I march off after being served first......but do I care? Not a jot!!

Oh well I think that’s all for now I will write some more soon
Keep Smiling
Mike
:D
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Welcome back Mike !!!!!!!
For those of you who are new Mike is the one that started the subject "How is everyone?" which is the most popular topic area on the website, 28 page of OT friends communicating with other OT friends like they were living next door. Updating, asking questions,reporting new experiences or just keeping in touch. All of this is important to those of us that have OT, we are an "extended family" that understands. SO! if you have not reported in lately it's a good time post. Thanks Mike, Gloria
Lorie M
Posts: 50
Joined: Sun Dec 18, 2005 12:40 pm
Location: MN

Re: How is everyone?

Post by Lorie M »

Mike,
Sorry to hear you have not had a good time this past year. Glad you are now feeling better.
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