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Trevor Bower

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@trevorbower

After reading some of the recent emails I seem to remember that it wasn’t too long, six months, after they closed the pool at Duke because of the pandemic that I started going down hill at a faster rate. I think the walking and other exercises we did twice a week were helpful in keeping my legs more functional. I cannot be sure if this is a f […] View
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  • Profile picture of Trevor Bower

    Trevor Bower replied to the topic Long Journey in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 3 weeks, 4 days ago

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

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    Trevor Bower replied to the topic CLENBUTEROL in the forum Research Topics 2 months, 2 weeks ago

    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]

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    Trevor Bower replied to the topic Has ALS changed your sleeping pattern? in the forum Living With ALS 6 months ago

    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]

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    Trevor Bower replied to the topic Another theory! Causes of ALS in the forum ALS News 7 months, 2 weeks ago

    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]

    • Profile picture of Amanda
      Amanda replied 7 months, 2 weeks ago

      Trevor, you are exactly right!! Here is my take on it ….It’s a cluster disease 🙂 meaning that many of the diseases that end up causing the muscles to atrophy and lose function get grouped together and called MND or ALS… because so little is known — they manifest similarly. To get an ALS diagnoses, they basically rule out all other…[Read more]

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    Trevor Bower replied to the topic Is this more progression? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 7 months, 2 weeks ago

    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]

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    Trevor Bower posted an update 9 months ago

    After reading some of the recent emails I seem to remember that it wasn’t too long, six months, after they closed the pool at Duke because of the pandemic that I started going down hill at a faster rate. I think the walking and other exercises we did twice a week were helpful in keeping my legs more functional. I cannot be sure if this is a f…[Read more]

  • Profile picture of Trevor Bower

    Trevor Bower replied to the topic Alternative Medicine and ALS in the forum Living With ALS 9 months, 1 week ago

    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]

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    Trevor Bower posted an update 10 months, 2 weeks ago

    Search results for: Is there an online clearing house for the reliability and safety of these supplements or curse? I worry that this will be a carnival broker industry with the magic elixir around every corner. If Dr. Bedlack doesn’t approve it I am doubting the advocacy. Home Search results for “Is there an online clearing house for the r…[Read more]

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    Trevor Bower posted a new activity comment 10 months, 2 weeks ago

    Thanks Amanda, The past few nights I’ve noticed promotion of new drugs, film etc to either slow or reverse ALS. Is there a clearing house to prevent a bunch of hucksters, carnival barkers and their ilk from selling us something that is worthless or worse the would do us harm?

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    Amanda and Profile picture of Trevor BowerTrevor Bower are now friends 1 year ago

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    Trevor Bower replied to the topic Do you experience muscle twitching? in the forum Living With ALS 1 year ago

    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?

     

     

     

     

  • Profile picture of Trevor Bower

    Trevor Bower posted an update 1 year ago

    Muscle twitching seems to be mostly at night when I am in bed, lying flat on my back. If I roll to one side or the other the twitching stops. The other night I experienced a twitch that went from the middle of my back all the way down to the bottom of my heel. My heel felt like it was burning up or I had stepped onto a hot stove.

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    Trevor Bower replied to the topic What are your opinions and thoughts on volunteering for ALS clinical trials in the forum Research Topics 1 year ago

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

  • Profile picture of Trevor Bower

    Trevor Bower replied to the topic Keeping a positive Attitude in the forum Living With ALS 1 year, 1 month ago

    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]

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    Trevor Bower replied to the topic Enhanced insulin signalling ameliorates C9orf72 ALS in a fly model in the forum Research Topics 1 year, 1 month ago

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

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    Trevor Bower posted an update 1 year, 1 month ago

    I have just finished reading about the stem cell trial that I believe is in stage 3 of R&D. Where can I find out if I am a good subject for this research? Should I go through my physician?

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    Trevor Bower became a registered member 1 year, 1 month ago

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 1 year, 1 month ago

      Hello Trevor,

      Welcome to the forum! I am one of the forum moderators, as well as a person who is living with ALS: I was diagnosed in 2010.

      If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or…[Read more]

    • Profile picture of Amanda
      Amanda replied 1 year, 1 month ago

      Hello Trevor, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I l…[Read more]

      • Profile picture of Trevor Bower
        Trevor Bower replied 10 months, 2 weeks ago

        Thanks Amanda, The past few nights I’ve noticed promotion of new drugs, film etc to either slow or reverse ALS. Is there a clearing house to prevent a bunch of hucksters, carnival barkers and their ilk from selling us something that is worthless or worse the would do us harm?

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