Fatigue limits my posting efforts but nothing can stop me altogether. This fact is supported by my post today, a post detailing the amazingly inadequate state of my medical care.
I was diagnosed with ALS on March 15, 2011, followed by a meeting with various caregiving agencies. The social worker, the breathing guy, the physical therapist, the occupational therapist, the mobility guy, the nutritionist and the neurologist all dropped by to offer their services as my need increased. This sucked more for Amy than for me. At that time I had few symptoms and had not yet accepted much of anything anybody said.
We were scheduled to meet with my neurologist three months later in a clinical setting. We did not go. I had no interest in sitting around with a bunch of ALSers. I didn't see much value in the company of misery. I still don't.
Here in Dallas, the place to be if you want state of the art ALS care, the system is the same as in Peoria. We have clinic every three months, where everybody sits around the room waiting to be assessed and documented. This would have more credibility as a system if we were REALLY EXAMINED, but we are not. Not once have I been measured for muscle loss/gain, making it impossible to determine whether I am diminishing or building muscle (which I believe I am, despite the claim that it is impossible). I can continue, so I will.
I have come to believe that the reasons we aren't individually measured and evaluated to determine our course and progress are several : we are considered terminal and false hope, along with wishful thinking, has no place in a doctor's office, there isn't time or money enough to test or evaluate every ALS patient, without a precedent, there is no reason to consider recovery is possible.
I would like to set a precedent. I am gaining muscle mass. I can now eat what I want. I can control my weight at will. I breathe better.
Something is going on. The breathing tests and others given at clinic support my recovery yet only scratch the surface. No additional testing has been suggested. I guess I've not yet shocked them from their habits. I need to become the Pink Elephant in the room.
Now you see that I must post, fatigued or not.
I was diagnosed with ALS on March 15, 2011, followed by a meeting with various caregiving agencies. The social worker, the breathing guy, the physical therapist, the occupational therapist, the mobility guy, the nutritionist and the neurologist all dropped by to offer their services as my need increased. This sucked more for Amy than for me. At that time I had few symptoms and had not yet accepted much of anything anybody said.
We were scheduled to meet with my neurologist three months later in a clinical setting. We did not go. I had no interest in sitting around with a bunch of ALSers. I didn't see much value in the company of misery. I still don't.
Here in Dallas, the place to be if you want state of the art ALS care, the system is the same as in Peoria. We have clinic every three months, where everybody sits around the room waiting to be assessed and documented. This would have more credibility as a system if we were REALLY EXAMINED, but we are not. Not once have I been measured for muscle loss/gain, making it impossible to determine whether I am diminishing or building muscle (which I believe I am, despite the claim that it is impossible). I can continue, so I will.
I have come to believe that the reasons we aren't individually measured and evaluated to determine our course and progress are several : we are considered terminal and false hope, along with wishful thinking, has no place in a doctor's office, there isn't time or money enough to test or evaluate every ALS patient, without a precedent, there is no reason to consider recovery is possible.
I would like to set a precedent. I am gaining muscle mass. I can now eat what I want. I can control my weight at will. I breathe better.
Something is going on. The breathing tests and others given at clinic support my recovery yet only scratch the surface. No additional testing has been suggested. I guess I've not yet shocked them from their habits. I need to become the Pink Elephant in the room.
Now you see that I must post, fatigued or not.
I find that really interesting. If they are wanting further evaluation/research in the area of ALS then they should be trending and documenting each patient. If not to follow the individual patient on their own progression, but as comparison to other people dealing with it. Maybe they could learn a few things about what you are doing to help yourself and use it for their own future use.
ReplyDeleteJanet- I had to check this post twice to make sure I wasn't the one writing it! This is SO ME and not Tracy that I am shocked by it! And Thrilled! About time you joined my soapy bitch box buddy!
ReplyDeleteThe truth is they do all sorts of research but none has anything to do with health at all. It's just to create a pill. They check weight and breathing capacity and test strength by manual means of picking and poking so as long as their memories and notes are really good they may be somewhat accurate. The fact that they see hundreds, perhaps thousands of people makes me a bit suspect.
I have tried and tried to tell them about our successes and no one has any real interest in hearing about it. They all nod and are polite and have the look of "oh, you poor desperate diluted dear". If your answer doesn't fit in their little check box they have nothing to do with it. They parade around the occasional person whose disease just never seemed to move forward but I have yet to see anyone who has improved their health and I think that is because they quit coming if they get well. Tracy doesn't want to go at all and never has. I DO!!! I want them to document every single bit of what we are going through so that when we beat this I can go back to their notes and say- you guys are so full of poop it's coming out of your mouth!!!
What a great post! It really gives us insight into the true mechanism (or lack of) for dealing with things like ALS.
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