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

Marianne
Posts: 98
Joined: Thu May 19, 2005 7:59 pm
Location: New Jersey, USA

Re: How is everyone?

Post by Marianne »

Mike, This sounds very encouraging. To date, OT has never recived any recognition that I know of. Most doctors just shrug their shoulders at it. It may well be that your brief movie career has spiked an interest. I hope you'll be able to get them the video footage they are requesting so that they can compare them.

Please let us know what comes of this. Take care and

Always keep on smiling! :)

Kaylie
patty
Posts: 43
Joined: Tue Apr 26, 2005 3:11 pm
Location: North Warwickshire UK

Re: How is everyone?

Post by patty »

Good on yer Mike, keep making the movies, you never know you might be famous one day and its all in a good cause, its like a breath of fresh air knowing someone is at last taking notice, lets hope something positive will come out of all your good work.
My very best wishes to you, Patty
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Mike: Wow! I knew from the time that I met you at our meeting in Rochester that you had the spirit within you to help open up our OT awareness in every way you could. My constant wish is that everyone that has OT would become an advocate of the cause too. Also I'm looking foward to your future career as a Hollywood star, you never know!!!!!!! This is so exciting, you certainly made my day. As always, Gloria
stella R
Posts: 103
Joined: Thu Jan 17, 2008 2:51 am
Location: winnipeg, manitoba, canada
Contact:

Re: How is everyone?

Post by stella R »

Well done MIKE,
I also would like to send you my very best wishes for all that you have been doing
for getting the news out about OT.
When i tell my DR. about how i feel when i lean my arms on a table he dosen't seem to take any notice.
Again Good Luck to you,
Stella
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 »

Hello Mike,
Wonderful news; if anyone is worthy of this "15 minutes of fame" you are certainly one of the candidates I would vote for. Hopefully it will lead to bigger and better parts - don't forget about all of us ...... Keep us informed please on what is happening.
Sincerely
Peggy
MikeS
Posts: 110
Joined: Wed Mar 19, 2008 2:51 pm
Location: Marbella Spain

Re: How is everyone?

Post by MikeS »

Well done Jeff for getting site back and running again.
.My problem is that I cant remember what I had for breakfast .Let alone whats happened since November...I do vaguely remember a fat guy in a red suit turning up some time towards the end of December ....The thing I do remember was talking to Gloria on the radio ...did we manage to keep a copy of that?
Ok everyone its up to you now .There were some great posts on here I suggest that if you can remember post them all back here on How is everyone so we can catch up ....or just give us updates

Keep smiling
Mike :)
Last edited by MikeS on Wed Apr 28, 2010 7:23 pm, edited 1 time in total.
admin
Site Admin
Posts: 548
Joined: Fri Jan 16, 2004 5:25 pm

Re: How is everyone?

Post by admin »

Hi Mike

Great to hear from you. The radio interview is safe, I'll repost it in a couple days.

best regards

jeff
admin
Site Admin
Posts: 548
Joined: Fri Jan 16, 2004 5:25 pm

Re: How is everyone?

Post by admin »

The radio show is now up on the forum

click to view post
Kathy F
Posts: 3
Joined: Sat Apr 10, 2010 4:17 pm

Re: How is everyone?

Post by Kathy F »

Hi,
I just listened to the radio broadcast that Mike and Gloria had and something that the doctor asked was interesting to me and also when Mike said that his tremors went away when you were in the hospital. I know that when I take certain antibiotics that my legs will shake even more. I think I wrote a message a long time ago to Gloria asking if others had problems when they took Cipro or Levaquin (Fluoroquinolone) antibiotics. Also my muscles in my knees were affected a long time ago when I took antifungal medication (ketoconazole).

I think if we all can try and share our experiences with different things we'e encountered we can possibly come up with a common thread or some precursor to some of this condition.

The doctor also asked if there was more problems with uneven ground. I know when I was at the beach and had to try and climb over some rocks, my legs were straining even more. I don't know if anyone goes hiking or what their expereinces have been. Because of the high intensity shaking of my legs, it transferred to my arms and made me feel even more strained and anxious when trying to get up and down off the rocks. That extra stress made it even more prominent to me. I have shared with another about the stress causing more problems with this condition and when my blood sugars are low.

I just wanted to add my two cents worth and see if anyone else may have had any other stories of their own that may correlate or be of interest.

Blessings to all,
Kathy
Las Vegas, NV
owen-lynettepickles
Posts: 54
Joined: Sat Jun 06, 2009 4:26 am
Location: Blenheim, New Zealand

Re: How is everyone?

Post by owen-lynettepickles »

Hi Everyone
Kathy brings up some interesting points. I find walking on uneven ground very uncomfortable. While holidaying in South Africa late last year we went on a couple of nature reserve walks. I used a hiking pole which gave me an "extra leg" and support, especially going downhill. Cobbled footpaths are not the easiest either. I wonder if anyone finds their condition worse when the weather is cold. We are heading into winter here and last week was particularly cold with south west gales coming straight from Antarctica. My 'wobbles' were noticeably worse and I even managed to trip over a couple of times at work - thankfully there was something to grab onto. I talked to our GP about it, but because his knowledge of the condition is probably less than mine, he wasn't able to offer any help. It does get very frustrating at times with so little information about OT - thank goodness for this website.
Regards, Lynette
Terese
Posts: 3
Joined: Wed Aug 18, 2010 6:32 am

Re: How is everyone?

Post by Terese »

Hi everyone,

My name is Terese and I'm from north central valley in California, US. I am presently visiting my daughter and my new grandson in Wales. I've had OT for 7 years now. When I first went to the doctor, he had no idea what it was, but is a smart man and referred me to a neurologist (my first indication that I wasn't crazy). The neurologist diagnosed me immediately and put me on .5 mg Clonazapam 3 times daily. It made me feel a lot better, although it made me sleepy at first. It didn't eliminate my symptoms, but I did improve overall. I think most importantly, this thing had a name! I went to 1 mg after about 7 months because it didn't seem to be working as well. I've tried other meds, but come back to the Clonazapam because it works (somewhat) and has no more side effects. I've learned many tricks about dealing with OT. Some things I used to do, I don't anymore. I raise birds and have several aviaries, but find it hard to go around and fill the feeders, etc. I have a lovely husband who now takes care of the birds for me and in exchange I take care of his 88 year old mom who lives with us. There are many many things that I can do ... I just can't stand still. I call it the wobblies to my friends but very few people really understand what it is or even that I have it. Sure, it's a royal pain in the ass, but at least I doesn't hurt. My sister has several health issues and is in chronic pain, and yet keeps a good outlook on things and doesn't complain...so can I do any less? I've really enjoyed this website, which I only discovered a week ago. Thank you all for sharing with me.
MikeS
Posts: 110
Joined: Wed Mar 19, 2008 2:51 pm
Location: Marbella Spain

Re: How is everyone?

Post by MikeS »

Hi Everyone
How we all doing? Whats new?
I haven't posted for sometime and I would like to come up with some wonderful reason why, like I have been bull wrestling in Malaga but the truth is I just have not been arsed (can I say that here?) See I live in Spain and its hot , very hot and as we all know when it gets hot and you suffer from OT every thing is just to much effort .But here I am still hot but rejuvenated Why? you might ask and even if you don't I am going to tell you.1 it is a year since my heart attack and my triple bypass and I feel great . 2 My fabulous wonderful daughter graduated from university .did I say she is beautiful to?, and is now doing a Masters .Ive worked out time she does a PHD to she will start her first job whens shes about 35 ...geez I retired when i was 50! mind you I started when I was 14 and number 3 I have been talking to Gloria a few times on phone . As you know the lady is just inspirational .We are talking about all the stuff we are organizing for the upcoming meeting .It is going to be great if you haven't booked you should really consider it .I promise meeting other 'Teddy Bear' legs suffers you will have a whole new view of our condition.
Ok that's why I haven't been posting here Why haven't you? I try and keep up with all the other posts but here is a good place to have a catch up tell us whats happening in your world even if you repeat something already posted.
I am going to try to have the acupuncture see if that works . I haven't seen my neurologist for ages but will see him before AC .
My OT has got worse I now realize that's what happens not rocket science is it , you wake up one day and some higher being gives you the gift of 'Teddy Bear' legs ,but in his infinite wisdom not enough of you to make the drugs companies sit up and think 'Lets help these poor suffering people' well actually they think 'Can we earn billions out of these poor suffering people' Just had a weird random thought wouldn't it be funny if one day you opened your spam email and there was a deal on a pharmaceutical product you really needed or wanted ?
Ok I think thats enough from me for now...now its your turn!
Keep Smiling
Mike
:)
MaureenB
Posts: 59
Joined: Mon Mar 22, 2010 4:24 am
Location: Southport UK

Re: How is everyone?

Post by MaureenB »

Hi Mike
I am so pleased to hear the ticker is going strong, and that, that has not been the reason for you not posting your cheery coments on the forum
I feel its quite o k to say you have not been arsed, I have also felt the same , I was so hiped and encouraged, to try an increase in clonazepan, only to find I had to struggle to stay awake during the day , only to fall asleep at 7 in the evening ... no life, to speak of , when I changed the time of the medication, to early evening I had bad dreams and awoke feeling depressed.....came off them had a few withdrawl sympton...
so on to my next trick ... the nordic walking .. loved it but have had to cut back because i had a problem with my knee and hip... but not defeated, just taking things a bit slower.
Unfortunatly I also have found that my O T has got worse,,I didnt think it could , if the specialist askes my explain... how can i, ? only you folks can understand,,, pottering, getting up and down at short intervals , has become even more of a night mare, the anziety in my brain and need to sit is even more everwhelming ,I find it so exhausting and frustrating...I have been know to have the odd cry when on my own in the garden,,but why waste water we have had a hose pipe ban in the North West of England.....
I some times do not even want to get up in the morning to face another struggle.... but we all do and put on a brave face . oh what we would give to have a day off ,
My consultant said the the signals from the brain to the legs are being blocked. do we need a long bottle brush ? ha ha.

I am not able to get to America in October for the meeting , and unfortunatly not even to Cardiff to see Annie(Golfnut) as I have my Sister comming over from Australia for a visit which i am so looking forward to
I wish you all a very happy time and look forward to seeing the photos and reading the story's

keep smiling
MaureenB
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
Nice to hear from you and that you are doing okay. I was really hoping to meet you this year at the meeting in October but it is not going to happen for me this time again. We have had a lot of major expenses this summer plus we have just returned from a cruise to Alaska so we really can't afford the expense of travelling to the east coast right now....either driving or flying. Maybe one day we can have something more centralized again and we could then drive.
I have been really busy all summer myself and just muddle through with my shaky legs. Everyone is really great about me having to sit a lot of the time and I get a lot of help from my grandchildren who were with us for most of the summer. I do notice that I have bad days usually when I have been doing a lot of exercise or yard work. I am trying my best to keep healthy and in shape but sometimes it tends to be extremely difficult. The heat this summer really does seem to make it worse. I am really enjoying the cooler weather we have been having the last few days and seem to have a lot more energy already.

My husband and I really enjoyed our cruise at the end of August to Alaska. I was quite apprehensive about how I would handle it all but was pleasantly surprised with how well things actually worked out. I took my trusty folding wheelchair and used it for standing in lines for disembarking, embarking, lifeboat drill and some shoppping. The rest of the time I managed to walk quite well even with the ship rolling and found quite a few places to sit or lean when I needed too. The great advantage of having a wheelchair is when you board the ship we managed to bypass all the lines and in a matter of ten minutes were aboard. Super way to travel. I also found our balcony stateroom (not handicapped) quite easy to handle and the bathroom had lots of handrails .The cruise line even provided me with a shower stool which was super. We definitely will cruise again as I found it quite enjoyable.

Take care and hang in there with your "teddy bear legs"
Chris 8)
owen-lynettepickles
Posts: 54
Joined: Sat Jun 06, 2009 4:26 am
Location: Blenheim, New Zealand

Re: How is everyone?

Post by owen-lynettepickles »

Hello Mike

I too wish my husband and I could have attended next month's meeting, but a trip to the States for us is a 'major' requiring plenty of planning. Work commitments this year unfortunately do not allow time away in October. I do feel isolated living in New Zealand with this condition, more so because we live on an Island 800 kilometres from Mainland NZ with only 600 people. Has its benefits as I don't have to try avoiding people walking along the street, nor stand in long queues, but we are so far away from medical expertise!!

We have just returned from ten days off the Island, the first part catching up with friends and family, some of whom we haven't seen for a couple of years. One friend, not having seen me with "teddy bear" legs kept wanting to reach out and grab me every time I wobbled. I had to keep reassuring her that I would not fall but would just find the first thing to grab a hold of. I then accompanied my husband to a Conference, but found the social functions very trying, especially standing around during the cocktail function. Had to find something to lean on away from the crowd and just stay there. This also happened during the pre-dinner drinks where there was nowhere to sit. Just left me feeling worn out to the point that I'm seriously thinking about not going to any more of these functions. We then flew to Melbourne, Australia, for four nights. We do enjoy the city and walking round it, despite the hills, but the crowded streets were a problem.

I wondered if anyone notices the "wobbles" being worse after flying. We have had several plane trips over the last ten days, two of four hours and four of two hours. I'm wondering if all the confined sitting had affected the condition as my husband and I, and my sister also, noticed I was affected more by the OT - or could it be that excitement and anxiety was the cause?

Enjoy the Meeting and I look forward to reading about it.
Regards, Lynette
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