Eric Jensen

https://www.alzforum.org/news/research-news/crispr-screen-pulls-down-fresh-targets-c9orf72-als

The test is abbreviated NFLC and is being used by the Mayo Clinic.

An EMG is a user subjective test. The experience of the neurologist/neuromuscular specialist is how it is subjective. I had an EMG done a month ago showing little issue. This month, when I went to Mayo, the experience of the provider found radicle denervation. Schedule another test. Get a second opinion. This is your life and you live your…[Read more]

Visited a Georgia State park to see a waterfall. They said it is handicap assessable. Joke 1. Started up the incline in my PWC and was quickly going sideways and into a fence(luckily it was there). Joke 2. Back down the handicap assessable decline. Sideways. Joke 3. Pretty view where I was able to access lol.

Thank you. They need to do just a day in our life, I agree. I wouldn’t wish this disease on anyone. I am glad that there are forums for us to vent our frustrations. Thank you for the idea to print them. Many times, the providers don’t want to hear me give scientific fact or an intellectual opinion. My first visit to the ALS department, the phy…[Read more]

Head looking down, is the best esophageal position. I make a tight lip seal and swallow.

Speech Therapist

My ST noticed that my lip seal and head positioning, were the cause of my bloating. Since I adjusted my eating and drinking, I have little bloating. I also eat smaller, more frequent meals.

Gabapentin’s side effect of sedation, goes away. Max dose here is 2700mg, usually given at 900mg three times daily. It is a first-line neuropathic medication. Lyrica is the other option. Good luck. God bless.

What’s next? 😂. I’ve had a myriad of possible disease/conditions. Many of them are, “life adaptable,” but ALS has been the king of them.
My wife and I thought there should be a database with, “how to go about opting for a peg tube or BiPap,” as examples.
A list of support groups, locally, for pALS and caregivers.

thanks

I am “fitted,” soon and I will let you know. Thank you

Love it!!!! We definitely are twins. I mowed my neighbor’s property for years because he was sick. Now, I had to put my pride aside as my neighbors came together and mow my property and built me a ADA ramp. Love others!!!!

eric-

Chris,

Thank you for sharing your experiences. As believers, I am told to believe that people will fail me. I have and always had, “unknown expectations,” in concern to others and how they treat me. It is hard because we are human and want to be appreciated and given equal respect.

Heide,

Thank you for sharing what you go through. I attend a, “large church.” The way my days go, because I do have a few muscle fibers left in my legs, lol, I may be using a walker in the morning but soon I can I longer walk because of weakness and exhaustion. I say all that to paint the picture. Some church people see me during my “be…[Read more]

I agree. I avoid them as well. I don’t need a reminder. Plus, it puts the, “what if’s,” in my head. Many of those what ifs won’t happen to me in any degree.