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Sad to hear of this Andy. I dont come on here much…havent since the paddling.net days…seems like time really does fly eh? I still think back to my 2 week vaca in Fla in 2003 and here we r in 2024!
Hope things can turn around for your health somehow… u have a great family at your side.May God help u!
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It sounds as if you already know much of what matters, friend. Folks here wish you nothing but good things. When a diagnosis is serious, if we are lucky, we are able to surround ourselves with the people and the places that give us pleasure and strength. We get a pass to narrow our focus to what is consequential to us, and ours, and to leave the static behind. It can be oddly liberating…
On the good days, we can live in the moment - as if that is all that exists. On the bad days, we can try to live for the “soon”. Having things to look forward to is simply a necessity, and it sounds as if you are already a master of the art.
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Thank you, that was well said and I am trying as much as I can.
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As I progress with this, somethings are evident to me. I can no longer do the things I did when I was healthy. Coping with this is tough, I compensate with everything I do. Sitting, I need to plan how I am going to stand. Walking is slow and my balance is way off. I try not to go backwards, recipe for a fall. And I have fallen a number of times. My fingers are not a deft as they used to be. My only solace is I have no pain.
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And you’ve got a lot of folks on your team, sir.
I hope you are getting physical therapy to help you through this, Andy.
And that your medical team is fighting to get you enrolled in that clinical trial.
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Physical therapy and occupational therapy. Not easy getting in on the trials. Have the doctors working on it and I am working on it as well.
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You are an important part of the experience here. I have enjoyed the many photos you have posted over the years. The adventure called aging can be challenging. This is a big one. Hold those close to you as they are in this with you. May hope and love help sustain you. The best to you and your family.
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Im glad u got out 4 a paddle with your son Andy! A cherished moment 4 u both!
Today I found a person that can help me with the trials. I emailed her today and as of yet have not heard back. This person is in NY and I am in NJ. I believe she is associated with Columbia Medical facility. And I have an appointment there.
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That’s good news, Andy. Praying it goes your way.
Not my wheelhouse but ask about progesterone. Some new science emerging about protective effect.
Inexpensive, good safety profile.
This coming Tuesday, I will start ALS treatment. Not the trials, but with my doctors. They will slow the progression. In the mean time I am going to try and get into the trials.
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Hi Andy, I wish you the best with your new treatment and I do hope you get accepted into the ALS trials.
Tomorrow I will have my first ALS clinic.It will.last about 5 hours with multiple doctors seeing me. No word yet on the trials.
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One of my doctors is going to try and get me into a trial.
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