[Trevor]

I was about 80 when the doctors finally ruled out all the other possibilities.\

Trevor Bower

[Trevor]

The biggest reason my diagnosis was delayed was none of the issues I was exhibiting paired up with any disease profile. As a result I was placed in the undiagnosed disease network.

[Trevor]

I use an electric wheelchair to get around the house. Most everything is reachable now. I miss going out in the neighborhood. The city won’t help me by reducing the curb height. Having a computer is really great for written communications.

[Trevor]

I just had my 4th booster shot yesterday. No adverse reaction. Also, got my influenza shot in the other arm at the same time. No adverse reaction.

[Trevor]

I never planned on ALS, I don’t know anyone that does unless they have familial ALS, fALS,  known in the family. Quite frankly I don’t what to plan for needs or life expectancy. For me, I’m glad I am a veteran and have support form the VA. My sporadic ALS is/has been, very slow in progressing. Because of this I think it took quite awhile (years) to assign my diagnosis. It would be a great assistance to have counseling regarding the future needs so one can try to plan future care requirements. I think more needs to be done through insurance and state/federal government partnership for additional in home care. On a slightly different issue, but still requiring long term in home care, is the burgeoning population of Alzheimers and dementia patients. I don’t have a medical opinion on this  but I think the isolation of patients with ALS increases the potential of Alzheimer’s and dementia.

[Trevor]

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.

 

[Trevor]

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

[Trevor]

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

[Trevor]

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.

 

[Trevor]

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

[Trevor]

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 feeling and could operate the artificial limb through use of alternative circuits in the brain. The engineer started on this quest because his mother had ALS. She died but gave him the idea and inspiration for using other nerve pathways to overcome ALS. Wouldn’t that be wonderful.

[Trevor]

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 bed. No coffee after breakfast is another new rule.

[Trevor]

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 December told me I have ALS. He said it is a variant of ALS because it doesn’t seem to show up in the tests for  ALS. The more I read the more I’m finding this is not just one disease, it is not just genetic or familial, and it doesn’t seem to fit into a nice little pattern. We talk about associations and possible connection with ALS. It isn’t fitting into a nice geographic association or just genetic, or what we eat or drink, whether we or young or old. The one correlation that has been made is that people that were in the US military are nearly twice as unlucky as the rest of the US population to come down with ALS. Well, that still didn’t get us any closer to the cause or the cure. But it is something to work with, maybe.

[Trevor]

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 organizations to help you both.

 

[Trevor]

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 Analysis with the conclusion that I do not have ALS. Finally,
I was given the diagnosis of having a new variant form of what appears to be ALS. So far it only affects me from the hips down. A plus.  I’m looking forward to your commentary Mark!

Trevor

[Trevor]

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?

 

 

 

 

[Trevor]

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 legs kept getting weaker. Finally last December I received the Diagnosis.  They believe I have a variant form of ALS. It doesn’t show up on the genetic tests.  Devastating!  Right away, I want to see what testing and research is on going?  What shows promise? Should I try to participate in a trial? Is it safe? Are there dietary modifications I could make, I have Celiac sprue,  to slow or reverse the progression of ALS?  So many questions.  I’m sure I’m not alone. Where do I go next.?

[Trevor]

Is there a definite correlation between insulin signaling and expressions of ALS? What if the ALS is not correlated with genetics? Is this possible?

[Trevor]

Trevor

• Where in the world are you from
• I’m currently in North Carolina, previously in central Iowa, Coon Rapids and Adel, Shawnee Kansas, Manteca CA, Lincoln, NE
• When were you diagnosed?
• I was diagnosed in 2000 at Duke University.
• Are you on any treatments?
• I am not on any special drug treatments, however I take lots of vitamins and other prescribed medications by my doctor.
• What are your favorite activities?
• Getting Outside the home
• Do you have a personal motto?
• Never Give Up
• What is the best place you’ve visited?
• Our National Parks

[Trevor]

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