New format & Moving on.....

My wife finally got a chance to look at my blog, yesterday and she suggested that I would need to change the format of my postings to avoid sounding too preachy AND to included some info on how I am feeling & such so I can give a well rounded report to friends and family. So here goes something.......

I just got a call from the ALS nurse at the Mayo clinic about my clinic visit next week. She did a FRS test (Functionality Rating System) on me over the Phone and it was 32 out of 48 possible. I have taken one previously, but I don't remember what it was, but I know it was higher. Just another confirmation that this damn disease has taken a little more from me since the last test which was in March or April. I will find out next week, what my breathing ability is now vs. what it was in mid-April which was 74%. In Feb/2010 it was 84%.

I would like to make a comment about Doctors and playing it safe. In the MDA research articles published yesterday for there May/June magazine; the first two articles dealt with the recent discovery by ALS researchers that our immune system may play a greater role in ALS that first thought. There was a seperate article that I read back in March on how some MD/ALS patients are taking Low Dose Naraxon (LDN) to jump start there immune system with promising results with there MD/ALS. Since there is not an official drug trial with LDN; my Doctor WON'T prescribe it for me. The nurse stated he gets questions all the time about stuff like this. He's afraid of doing more harm. Well what more harm could he do? The LDN has been researched to the point that It has no side effects at the 3-5 mg range that is used for this. While I can understand his position; I don't think he understands mine. This is not my fight. I don't have energy for it.

All this week I am battling increased fatigue and stiffness. It's like I have lead in my butt and I am sooo stiff, it's takes me more than normal (my normal) to get up and moving. I know this is the way this #$@%^& disease is BUT I still don't like it! My challange today is shaving and showering. I am down to once a week or once every two weeks. I might do a clothes change in there if I start smelling myself.

AS for my posting yesterday; I am going to let it stand on it's own for a while before re-visiting it. It feels right in my heart BUT it's only part of the answer. For some reason (the Holy Spirit maybe) the story of Job pops into my mind. Specifiably, the part about where Satan goes to God about what Job will and will not do if he is afflicted or his situation changes for the worse. Father put boundaries on what the enemy of my soul could do to Job. Is this the same case for me, all of us, outside what we bring upon ourselves? Please, everyone consider this spiritual position and give me feedback.

One Doctor visit with my GP doctor and my first ALS group meeting today. I hope a nice diner out with my wife is in there somewhere. I am getting a Hoyer lift from the ALS loan closet in Jax after the group meeting tonight. Now, if I could only get the $600.00 from the ALS Guardian Angels group for the wheelchair lift! That is what my friends and family need to pray about, for me.

That's all for now. Look, more followers; we are up to 11+1!!!! Love Hugs & Blessings to all, Gene