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Learning to Take it SLOW

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Unread 11-11-2012, 03:34 PM   #21
hajile99
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Originally Posted by rogerm213 View Post
Glad to hear the race went well Adam. As for jumping out of a plane I think I will pass on that one for now!
Lol! Me too! I'll keep my feet firmly planted on the ground!
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Unread 11-11-2012, 03:35 PM   #22
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Originally Posted by SoftTalker View Post
I sincerely hope you will soon be able to find the doctor that is the best for you and your health needs. I am very grateful for my current neuro - and - I do believe that he is still learning about MG via verfiable medical information and my "subjective updates" regarding my health/life with myasthenia gravis. My neuro is a "generalist" neurologist (does not assert to be a specialist in any neurological area).

Before I became this doctor's patient, I was seeing a neurologist who lists MG as one of his "specialties". His rigid approach and expectations from his medical treatment was (to me) at times, perplexing. Upon leaving an appointment one day I was approached by another patient who expressed this same observation. An MG crisis (while under this specialist's care) and subsequent hospitalizaton in a hospital - which he did not have attending privileges to - is what generated my transition from one neurologist to another.

Hang in there, when the time is right, I believe you will find the right physician.
Oh! A surprise message of support just when I needed it most but least expected it! THANKS SoftTalker Sue

Thanks also for sharing your experiences with docs - Sounds like the second doc needs a class set of those books you mentioned about in the reading thread!
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Unread 11-12-2012, 09:13 AM   #23
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Originally Posted by SoftTalker View Post
Originally Posted by elinora

......it is the physician's responsibility to adjust his or her definition of normal health according to each patient

BRAVO elinora - to me, this is the sign of a good physician. I just don't know how many of these type of doctors are out there.


Originally Posted by Anacrusis

Hi elinora...thats a good point. In my own case it feels like that is almost impossible - But Im still working on finding one who does exactly that .....Anacrusis



Anacrusis

I sincerely hope you will soon be able to find the doctor that is the best for you and your health needs. I am very grateful for my current neuro - and - I do believe that he is still learning about MG via verfiable medical information and my "subjective updates" regarding my health/life with myasthenia gravis. My neuro is a "generalist" neurologist (does not assert to be a specialist in any neurological area).

Before I became this doctor's patient, I was seeing a neurologist who lists MG as one of his "specialties". His rigid approach and expectations from his medical treatment was (to me) at times, perplexing. Upon leaving an appointment one day I was approached by another patient who expressed this same observation. An MG crisis (while under this specialist's care) and subsequent hospitalizaton in a hospital - which he did not have attending privileges to - is what generated my transition from one neurologist to another.

Hang in there, when the time is right, I believe you will find the right physician.
Thanks! I'm trying. I hope I'm answering correctly here. It's new and confusing.
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Unread 11-12-2012, 12:40 PM   #24
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Thanks! I'm trying. I hope I'm answering correctly here. It's new and confusing.

You are doing great elinora.

Welcome to the "Group".

SoftTalker Sue
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Unread 11-13-2012, 07:41 AM   #25
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I have done loads of thinking on all of this and have decided after last nights 2 mile run (which turned into more walking than running) that I am going to defer my January marathon at Disney and instead put the credit for the entry fee toward the Disneyland Half Marathon in September. While I am seeing progress I have to think more long term and have to accept that progress will be slow in coming. Being stubborn and impatient will likely only lead me down a road to failure and risk undoing the progress I have made.

I apologize if I came off as a bit of a jerk here. My long term goal is still to get back to life as it was before MG and I think in time I can do that.

I will still make the trip to Disney in January as a spectator to cheer on my wife and daughter and spend time with all the friends that I have met through running over the years. There will be other races but first I need to try and heal at a slow and hopefully steady pace.

Thanks for all your advice. You all have helped me learn so much and it has been great to go to the Docs with knowledge in advance of my appointments.
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Unread 11-13-2012, 07:57 AM   #26
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You were not being a jerk. This is a really frustrating thing to be going through. We are in the same boat. I feel like my life is being stolen by this thing and I believe that the rest of us do as well. The treatments working to help us get our lives back.
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Unread 11-13-2012, 08:05 AM   #27
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I was good at taking it slow on Sunday and Monday. Well, sort of.

Saturday I sang and played a gig. I was the lead singer. I put a tremendous effort out and it went great. I was able to sing well. I sat on a stool rather than standing. The audience was receptive and enthusiastic. I was able to present several of my original songs as well as a few standards. I even had a nice chat with several people after the show.

I was glad that my husband drove me because on the way home, I ran out of gas. My tongue was paralyzed and I couldn't talk. If I had been pulled over, I would have been arrested for drunk driving. Then it because difficult to breath. I tried to relax and concentrate on breathing and it got easier in a few minutes.

By the time we got home I was a lot better. (It was an hour drive.) I have been a bit wobbly in my gait and my ptosis has been bad since, but I seem to be feeling ok this morning. I am going off to work here in a bit.

"You pays your money and you takes your chances."
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Unread 11-13-2012, 01:18 PM   #28
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Originally Posted by southblues View Post
I was good at taking it slow on Sunday and Monday. Well, sort of.

Saturday I sang and played a gig. I was the lead singer. I put a tremendous effort out and it went great. I was able to sing well. I sat on a stool rather than standing. The audience was receptive and enthusiastic. I was able to present several of my original songs as well as a few standards. I even had a nice chat with several people after the show.

I was glad that my husband drove me because on the way home, I ran out of gas. My tongue was paralyzed and I couldn't talk. If I had been pulled over, I would have been arrested for drunk driving. Then it because difficult to breath. I tried to relax and concentrate on breathing and it got easier in a few minutes.

By the time we got home I was a lot better. (It was an hour drive.) I have been a bit wobbly in my gait and my ptosis has been bad since, but I seem to be feeling ok this morning. I am going off to work here in a bit.

"You pays your money and you takes your chances."
I can really relate to this because I too used to sing. I can't sing anymore and it makes me sad. I can't play guitar anymore either. I want to soooo much, but anytime I sing I can't breathe. I used to have a very powerful voice and now there is no ability to even control where the notes go without a lot of effort. Once upon a time I was a music major in college and even had a once in a life time opportunity to sing in the 1000 voice choir at the 1984 Olympic Open Ceremonies. I would have continued into a music career but circumstances halted me, and now that I'm able to pursue something my body can't.

I've tried to find another way to use my creative abilities so later in life I became an art major with an emphasis in painting, but by the time I graduated the economy tanked and I have a bunch of abstract paintings that I can't sell, especially in Arizona where Southwestern style prevails. I haven't painted in a while because I'm just too tired and I feel it's pointless to continue in this economy.

Now, I've been trying to write a sci-fi/fantasy novel, and I'm about a third of the way done, but my mind is very dull lately. I try to write bits of the story here and there, but my memory of details are often obscured. I've made a calender of events in the story so that I don't get too far off track, and I'm writing bits out of sequence and will piece them together later.

It's like I'm evolving all the time; searching for a niche that my body can handle.
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Unread 11-13-2012, 06:48 PM   #29
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It's really difficult, and you had to sort through things in your own way. One reads a lot of information and draws up plans in one's mind based on that info, but then one finds out how little MG concerns itself with plans. I don't know one runner who would do well with dealing with this. I am not. Have hope, though. I was unable to run a mile this summer, but now on 40 mg of prednisone, running is coming back. I have done two long runs, albeit at an excruciatingly slow pace. Don't give up!

Quote:
Originally Posted by rogerm213 View Post
I have done loads of thinking on all of this and have decided after last nights 2 mile run (which turned into more walking than running) that I am going to defer my January marathon at Disney and instead put the credit for the entry fee toward the Disneyland Half Marathon in September. While I am seeing progress I have to think more long term and have to accept that progress will be slow in coming. Being stubborn and impatient will likely only lead me down a road to failure and risk undoing the progress I have made.

I apologize if I came off as a bit of a jerk here. My long term goal is still to get back to life as it was before MG and I think in time I can do that.

I will still make the trip to Disney in January as a spectator to cheer on my wife and daughter and spend time with all the friends that I have met through running over the years. There will be other races but first I need to try and heal at a slow and hopefully steady pace.

Thanks for all your advice. You all have helped me learn so much and it has been great to go to the Docs with knowledge in advance of my appointments.
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"Thanks for this!" says:
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