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Trevor Bower

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@trevorbower

Working to get the city to reduce curb heights to allow people in wheelchairs access to and from the street View
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  • Profile picture of Trevor Bower

    Trevor Bower replied to the topic Is anyone getting the 4th shot/booster? in the forum Coronavirus (COVID-19) and ALS 2 months, 2 weeks ago

    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.

  • Profile picture of Trevor Bower

    Trevor Bower replied to the topic Did you plan ahead for long-term care, or were you in denial? in the forum Living With ALS 2 months, 3 weeks ago

    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)…[Read more]

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    Trevor Bower replied to the topic Would you seek out Albrioza treatment? in the forum Research Topics 5 months, 2 weeks ago

    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.

     

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    Trevor Bower replied to the topic Summer COVID Updates – – How are YOU doing? in the forum Coronavirus (COVID-19) and ALS 6 months ago

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

  • Profile picture of Trevor Bower

    Trevor Bower replied to the topic How Well Are You Sleeping? in the forum Living With ALS 6 months, 2 weeks ago

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

  • Profile picture of Trevor Bower

    Trevor Bower replied to the topic What is, or has been the biggest adjustment for you in living with ALS? in the forum Living With ALS 7 months, 3 weeks ago

    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.

     

  • Profile picture of Trevor Bower

    Trevor Bower posted an update 7 months, 3 weeks ago

    Working to get the city to reduce curb heights to allow people in wheelchairs access to and from the street

  • Profile picture of Trevor Bower

    Trevor Bower posted an update 7 months, 3 weeks ago

    Working to get the city to reduce curb heights to allow people in wheelchairs access to and from the street.

  • Profile picture of Trevor Bower

    Trevor Bower replied to the topic Long Journey in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 9 months, 1 week ago

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

  • Profile picture of Trevor Bower

    Trevor Bower replied to the topic CLENBUTEROL in the forum Research Topics 10 months, 4 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]

  • Profile picture of Trevor Bower

    Trevor Bower replied to the topic Has ALS changed your sleeping pattern? in the forum Living With ALS 1 year, 2 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]

  • Profile picture of Trevor Bower

    Trevor Bower replied to the topic Another theory! Causes of ALS in the forum ALS News 1 year, 3 months 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]

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      Amanda replied 1 year, 3 months 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 1 year, 3 months 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 1 year, 5 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 1 year, 5 months 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]

  • Profile picture of Trevor Bower

    Trevor Bower posted an update 1 year, 7 months 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]

  • Profile picture of Trevor Bower

    Trevor Bower posted a new activity comment 1 year, 7 months 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, 9 months ago

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    Trevor Bower replied to the topic Do you experience muscle twitching? in the forum Living With ALS 1 year, 9 months 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, 9 months 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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