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

Moderator: gloria

By Betty
#6381
Hi Mike,
Thanks for the update. When you get the measurements or amounts of oxygen you were given, and post them, I will most certainly consult with me doctor and try to have him give it to me to try.

If several of us do this, and have reasonable results, maybe neurologists may look closely into this. We don't know unless we try. We WILL find an answer to OT.

Keep smiling! :)

Betty
By MikeS
#6382
Latest update the head of neurology has just been to visit and said it was incredible He had never seen it before We chatted for bit ,not too much as it was done in Spanglish him trying to speak English and me trying to speak Spanish
The upshot I’m getting prescription for oxygen to be installed in my house! This is just first step He was amazing just went ok let’s try it
Hopefully it’s not just a one off let’s hope all the drs accept Use my video as proof Don’t take no for an answer It’s taken me 10 to get a dr to agree
Keep smiling 🙂
Mike
By Lake of the Woods
#6383
Hi Mike
This is wonderful! So is it up to you how often you use the oxygen at home?
I imagine you will have to experiment with this - ie. just using it at night?

I will definitely be talking to my doctor and hopefully get to try it also and will report back.

Best of luck always,

Peggy
By Betty
#6384
Hi Mike,

As Peggy said, this is wonderful. I, too, will try to get the "okay" from my doctor.

Keep us posted; is it pure oxygen or a mixture? Will wait for your next post. Are you still tremor free?

Betty
By rosemary
#6385
Hi Mike

Daud and I have watched your video with great interest and are pleased to see that your neurologist has not dismissed your experience out of hand and is prepared to give it a try. We would be very interested to hear more from you after you’ve had oxygen apparatus installed in your home and are using oxygen on a regular basis.

I remember that at our Houston meeting you mentioned that you had experienced a definite improvement for a couple of weeks after having had general anaesthetic. Although the doctor who was addressing us at that meeting dismissed this out of hand, I was wondering if your own neurologist had any views on the matter.

Keep up the good work and keep us posted with any further news.

Kind regards and all good wishes

Rosemary (from London)
By rglobe
#6386
Hi everyone ... I guess I would be know as a lurker in that I don’t post very often but I want everyone to know that I read your comments with interest. Mike ..... I have no problems consulting my Dr. But at the moment and for the next 6 months I am at my winter home in Texas ... it’s the only cure I know of for the cold winters in Canada ... I do wish you the very best of luck and like a lot of others will be following your posting. Many thanks for taking the vanguard position on this.
Regards
Ron
Mercedes, Texas
Burlington, Ontario, Canada
By pcw1941
#6387
HI Mike -- Please keep us posted on your progress with oxygen at home. If you continue to have significantly diminished tremor, I will be asking my doctor next month if I can try it. And I will certainly ask to have my oxygen saturation level tested. This is very exciting! I do remember you mentioning it in 2017. thank you, Pat
By MikeS
#6388
Hi everyone
I will keep everyone updated with oxygen experiment as soon as I get some more data
In the meantime time this is a post I put on Facebook.
As you know I’m in early stages of experimenting with oxygen
I was talking to my wife and she started to open up about living with someone that has OT The following are her thoughts and words she asked me to share them with you

LIVING WITH SOMEONE WITH O.T
With Michael currently testing oxygen therapy at home to see how it affects his OT we have spent a lot of time discussing his condition and, in turn, how that has affected me, his wife. We have been together 35 years so I have witnessed first-hand the onset and development of this weird and debilitating condition. When we met he was a strong, fit and healthy man – a man who did martial arts, played tennis, swam regularly and who was always the centre of gatherings entertaining people with his jokes for all occasions and never ending stories.
When he first began to struggle with the ‘weird’ feeling in his legs we were understandably confused about what was happening and no doctors we consulted could help us. One even suggested he was imagining the whole thing. In the beginning it was relatively easy to accommodate – he just sat down more. As time progressed it became clear that the problem was getting worse and finally in 2008 he was diagnosed by a neurologist here in Spain as having OT. Once it had a name we felt relieved but that was short lived when we realised there was no cure, only off label treatment and actually very little was known about OT.
Michael did try Neurontin for a period of time but the side effects for him were horrendous and the relief the tablets offered in terms of being able to stand for longer was minimal. By this stage to say OT ruled our lives would be an understatement. Everything had changed. Our home was now full of stools everywhere; we had redesigned our kitchen and one bathroom to make life easier for Michael. Everyday tasks like supermarket shopping were exhausting for both of us. For Michael, because if I stopped to look at something he would have to keep walking, and for me because I’d have to wait until he came past me again so I could show him something and ask him if he fancied that for dinner or not. Sometimes he didn’t have time to answer before he was off on another circuit and I’d have to wait until he got back to me again. Everything took far longer than ‘normal’ because he couldn’t stop. Some of you will be thinking I should have just shopped without him and, of course, that was an option and it would have been easier to just leave him at home but we want to share our life together so that means doing things together not separately.
OT does make me angry and sad. Of course I’m sad that Michael has to live with this horrible disorder every minute of every day but I’m sad for me too. And I’m angry with OT for impacting our lives in so many ways. I’m angry with OT for making me have to remember to keep out of his way every time we come in and out of places. If I get my timing or positioning wrong he bumps into me which he hates doing and I don’t enjoy much either. I’m angry that there are so many things he can’t now do. I’m angry that our life revolves around OT.


Things came to a head when we were in a local department store looking for a gift for some friends. We were in the china and glass department and my nerves were on edge as I tried to not only choose a gift but keep an eye on Michael as he stumbled about searching for a non-existent place to sit and becoming more and more panicky. I had visions of him wiping out whole displays of glassware with one stumble. We had to leave the store, gift not purchased. We had spoken about Michael using a wheelchair which he would not even consider. He was in total denial about the level of his disability. He was in denial about the impact it was having on not just his life but mine too. He was not ready to be seen as disabled. He’s a very proud man and he did not want to show any sign of weakness to anyone and, for him, being in a wheelchair would mean he was weak.
Of course I listened to all his objections about using a wheelchair and then ignored him and hired one. He was so angry with me – he refused to use it and told me that I would just look stupid pushing an empty wheelchair around. I told him I didn’t care what other people thought – if he didn’t want to use it I would just use it to put my shopping in BUT if he did want to use it, it was a chair for him to use. That’s all it was – a chair on wheels.
A few days later we returned to the department store and, sure enough, I was pushing an empty wheelchair around. Then I had an idea and suggested we have a look around the menswear department to see if there was anything Michael liked – he absolutely loves clothes shopping! It wasn’t long before he found a jacket he liked the look of and when he couldn’t stand long enough to check it out I gently suggested he sat in the ‘chair with wheels’. He gave me a look and then sat down. I then pushed him round so he could check out more things and he quickly realised that actually it made the whole experience more pleasant for him and for me. We then discussed how, if he were to start to use a wheelchair, maybe he could use it to his advantage and that’s exactly what happened. Travelling became easier – instead of it being a traumatic experience at an airport for example, it actually became a pleasant experience. We could shop together in the supermarket or anywhere. Life became less stressful.
Today has been an amazing day. Twelve hours of oxygen last night gave us six hours today with no tremor. We started the day with a slow dance together which filled us with joy. And then, guess where we went. Yep, we went back to the department store. Michael shopped in the menswear section and we met friends for lunch. We had the wheelchair with us, just in case, but most of the time it just had our shopping in it. Today I felt that, just for a few hours, I had my fit, strong husband back and no matter how many more hours or days we get like today I will be grateful.
By Lake of the Woods
#6389
Hello to Mike and his wonderful wife,

I have to admit, I have a lump in my throat when I read this - I am just so hopeful for you Mike!

Funny that I am feeling so much pleasure in fact that YOU are doing well - someone with OT - and a friend I know with OT is doing well and that means a lot to me.


You say that after 12 hours of oxygen you had 6 hrs. of tremor free experience.

Did the tremors start after that?

Thank you so much for all the posting,

Peggy
By Marianne
#6390
Hello Mike: I hope your success with the Oxygen therapy continues. I look forward to seeing your post with all particulars of your therapy ( liters per minute, how long you use the Oxygen before you gain time with no tremors) and anything else that would help me convince my neurologist to prescribe oxygen therapy for me. At the moment I am on 3mgs of Clonazepam and 1200mgs Gabapentin daily with not much result. I understand your resistance to a wheelchair. I was diagnosed back in 1996 and over this past year I’ve noticed drastic downward change to my standing time. Several years ago I caved and purchased a motorized scooter which can be folded up to a carryon suitcase which my husband is able to put in and take out of our car. This past year he has taken over my household chores because I cannot stand even to put clothes into the washer. I hope your new therapy continues and hope hear from you. Keep smiling 😊
By Betty
#6391
Hello Mike,

I want to thank you and your lovely wife for sharing HER experience of living with someone with OT. It made me aware of what my husband must experience. I want him to read what your wife wrote and ask how he feels.

Also, with OT friends like you, sharing your experience with oxygen therapy, gives all of us hope for the future. Like Peggy said, it makes me VERY happy to know someone with OT is doing well.

I'm also sure everyone is waiting for your next update, I know I am.

Good luck and keep posting!
Betty
Last edited by Betty on Thu Nov 21, 2019 9:32 pm, edited 1 time in total.
By Admiersash
#6392
British Columbia here. Really, really interesting to hear about and thank Mike for his experimenting with oxygen. My supportive partner shares the YouTube videos as he has Facebook. Please continue to post links here for non-Facebook users. Speaking of wheelchairs, I will use them in airports (o my gosh, Heathrow is a must for one!). I’m also thankful for my Nexus/Global Entry card when I rely solely on my cane (and supportive walls, my partner’s shoulder and helpful Security people - lately one brought me chair and then took caned me and my partner to the front of the screening line and explained to others we were by-passing).

Building on Mike’s wife’s comments, can we develop a Survey for/about our partners? What do they experience, what do they feel, what do they do to help and support, what do they see that helps the OT person bear it, reduce it. Just a few starting questions for such a Survey, I’m sure there are others. Our partners need support, too! :) to all.

Admiersash
By adrianoconnor
#6394
Hi Mike and Hi Mrs Mike. (sorry I don't have your name) When you talk about Mike going shopping and always on the move. You could easily be talking about me. You must be one of the few people without OT that has any idea what it is like. As far as the wheel chair goes, I can understand Mile's reluctance to use one. The problem with OT is the fact that it is so gradual. To start with you just need a little help to keep you steady. Then, suddenly you are disabled and need a lot more help. About two years ago I purchased a wheel chair and I use it to go shopping. I try not to let my wife push it. I feel it is a bit unfair on her. So what I do when we go to a large supermarket is, I push it through the door and jump aboard once inside. Because I removed the foot rest I am able to scoot along and also use may hand to propel the wheels. Once you get used to the idea it becomes more enjoyable to go shopping. Without the chair you are unable to stop and look at things. A bit like window shopping. Unfortunately we have to live with what we have got. I'm sure there are many worse off than us OT sufferers. Looking forward to hearing more about your oxygen experience.
Best wishes from Adrian O'Connor, Ireland
By Alibaba
#6395
Hi Mrs Mike,

You don't know me and I don't know you but I take off my hat for you.
Best wishes
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