I have not paddled in 8 months, the reason is, after seeing a bevy of doctors, I have ALS. I am slowly losing my mobility and my fingers are not as deft as they used to be. I have done a lot of research on this desease and there is no cure. But I came across something recently that gives me hope. SPG302 for ALS is a miracle drug that can cure ALS. It is still in the trial stage. So I need patience.
And I am going on my first paddle this weekend. My son is flying in from Arkansas and he will help me get in my boat and paddle along side of me. We will be in our Pocono house and my daughter and her two girls are coming. Something to look forward to.
Sorry to learn of your diagnosis. The new treatment sounds too good to be true.
“There is no cure for ALS; however, multiple medications and interventions can help reduce symptoms and improve their quality of life.”
If I had practiced oncology, I could never tell a patient anything other than the truth, though I realize some have the intention of giving hope. Others have the intention of making money or marketing their treatments.
You have a great attitude and wonderful family, and after reading this article I’m hopeful that this drug is effective and you won’t have to wait terribly long.
Wish you could get into clinical trials.
Enjoy the time with your son, and do what you really want to do that you are capable of in the coming months. A lot of us are at the age when our bodies have different plans than we would have chosen, part of life I guess, but it just plain sucks when it’s things like ALS.
Sorry to hear, Andy. I enjoyed paddling with you at Raystown and always appreciated your remarkable photos. Good luck dealing with your condition. I’ve hit a few health bumps, but nothing comparable. Puts things in perspective. Thanks for posting.
#1 fight! Enjoy the day with your son. God bless I’m 72 in December every day is different some good some bad. The new drug sounds promising. I’ve known a few (to many) who have been afflicted by this but much, much younger. Prayers for your future endeavors.
Thanks to all for the kind words. I feel I am in a comedy show! My son and daughter are hilarious when they get together. My son did a parody of past due stuff in our refrigerator… Tasting one item and immediately falling down.
There is no bond like family. That is your legacy. They are what we are about. You may not be able to do as much due to your condition, but you are fortunate to have yiur greatest asset, the skill and knowledge ofva lifetime. Enjoy the opportuntiy to share it, and your son is proof that a theraputic dose of expired product might shock him momentarily, but he adapted and compensated. Make the best of it.
I don’t know the details of how ALS impacts kayaking…I have worked with kids with disabilities for about 10 summers now, one adult camp and several First Paddle events. I have also attended and helped teach an ACA Adaptive Paddling Workshop (APW). At least in my area (Upper Michigan) they have problems finding people who the candidates can work with to learn the skills at the APW. And the practice students get a free exposure to options to adapt the equipment to their limitations. That might be applicable to your situation to get you on the water more (again). Just a thought…
Everyone has issues as they age.
I just had a conversation with my brother today. He took his girl friend out for a paddle. She capsized the canoe and wanted to go home. Now all of his canoes are for sale. I sold all of mine this year.