Trevor Bower

Sometimes I feel like I am a single explorer looking for the magic mushroom that is reportedly growing the forest but nobody has seen it or has any idea it’s appearance or form. As my health deteriorates I might be much more apt to throw caution to the wind and try any mushroom growing under a bush.

Had all the shots, including a booster. Going for booster #2 soon.  Mask up!

I think ALS has reduced my ability to sleep through the night. I feel fortunate if I only make one trip to the bathroom.

My biggest adjustment is not being able to continue to be self sufficient. I need to depend on others to even do simple things like changing a light bulb in the ceiling. Mowing the lawn and planting and taking care of a garden.

I don’t know where you live. You need to keep looking. Find a recognized ALS doctor. Never give up looking for help.

We all want the silver bullet the shot of D5W to solve the problem. It is going to be tough since we really don’t know the cause.  I too am a patient of Dr Bedlack. I’m hoping it will be found or an alternative may be found. On a program last week they were showing remarkable microcircuitry to enable people with lost or severely damaged limbs get…[Read more]

Since being diagnosed I have started to keep track of changes. As I progressed my sleep seems to be in two hour bursts. Leg cramps and need to empty my bladder. Needless to say, I am exhausted all the time. I can’t “catch up on sleep” no matter what I’ve tried. One item that seems to help the bladder issue is eating a bowl of popcorn before…[Read more]

So many ideas are floating around tonight. I was told by a prominent ALS doctor that I didn’t have one of the “S” diseases years ago. He said that was the good news. Years later after going through lots of tests and enrolling me in the Undiagnosed Disease Network I came through without an answer.  I still struggled on. That same doctor this past…[Read more]

My ALS team at Duke told me to slow down.” If you keep doing what you’re doing now you  will go down faster.”  It’s hard to quit doing what you have been used to doing all your life, but you have to listen to their wisdom. You can be there for your daughter but you need to get some additional assistance from friends, neighbors and professional o…[Read more]

Mark,

Thanks for your insight and thoughtful comments about ALS. I can echo what you said. I’ve been through three medical systems here in North Carolina. They couldn’t figure it out, so the Duke doctors enrolled me in the Undiagnosed Disease Network. So many lab tests, exams, MRI’s and on and on  including two different universities  DNA A…[Read more]

Dagmar, most of my muscle twitching occurs when I’m in bed and lying ng flat on my back. If the twitching continues  I roll on my side and it seems to stop. Is this problem a positional issue with the alignment of my spine?

I would be interested if I knew more details about the study.

I can completely understand the struggle to keep positive. I’ve struggled for eight years with an “unknown issue” that slowly decreased my ability to walk. I’ve had every neurological test known to the best neurologists at Duke.  Dr. Bedlack finally enrolled me in the Undiagnosed Network, UDN. The UDN group could not come up with a reason why my…[Read more]