Blog

Getting used to a BiPAP

For anyone who is struggling to get used to using a BiPAP. Persevere.....it does get better!

Bathroom & Shower

Here are some pictures of what we did for our bathroom. The bathroom inside dimensions are 15 feet by 7 feet. The shower is 7’ by 7’. It works perfectly. We will be putting in a ceiling lift and track that will take me right from the bed to the toilet and into the shower. You can see the toilet has been lifted with a toilevator and has a ToTo Washlet. [ATTACH]10[/ATTACH] [ATTACH]11[/ATTACH]

Weird Idea (Of Having Fun)

This is one of the 20 songs that I wrote last year, but didn't make it on to my CD Weird Idea (Of Having Fun) Playin' on the phone Get another girl to loan Now there's emptiness the call is done Sure is a weird idea of having fun Scrubbing down the floor Like a thousand times before Always smokin' jib until yer spun Sure is a weird idea of having fun You have ignored friendly advice They say you try it once you'll try it twice You have been misled by yer stubborn head As thick as bricks Ev'ry day a tragic way To get your kicks

My Trache Tube

Here is the closest I could get to an actual picture of my trache tube, I have the cuffless one - ref# 100/811/080.

I DO NOT have ALS!

Last Thursday (April 23) I went to the MDA Clinic in Oklahoma City. My neurologist told me, 'I am not completely sure that you have Myasthenia Gravis, I now know that you do not have ALS.'

New appointment date

I found out yesterday afternoon that they are having to move up my appointment at the MDA Clinic because the doctor will be out of town next week. So I am going tomorrow (Thursday the 23rd) to OKC and will know something earlier than I thought.

Nine days until my appointment

My appointment with the neurologist at the MDA Clinic in OKC is finally around the corner. It is Thursday, April 30. I would love it if he is able to give me a definitive diagnosis of MG and totally throw out the ALS one.

My neurologist thinks I have MG instead of ALS

Yesterday I went back to see Dr. Beson at the MDA Neuromuscular Center in Oklahoma City. I told him that my speech was almost normal, and I only occasionally have a day where it is worse. Also my energy is better than it has been in over a year. He said he loves it when doctors are wrong about an ALS diagnosis. All the tests showed either the same level or improvement of strength, etc. So he said that he believes that I will live a long, normal life. He wants to see me in six months, when time will tell if this is really Myasthenia Gravis, and he put that down as a tentative diagnosis.

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