My health as of late

Paddlers' Place
#61

I plan on paddling again. Just need assistance getting in and out of the boat.

4 Likes
#62

I have the same problem getting in and out of my boat. Thankfully, I have paddlers that help and I hope you have the same.

3 Likes
#63

Then you got what you need. Your playing the cards you were delt. That’s the best we can do. It’s great to have a backup plan.

1 Like
#64

I’m truly sorry to hear about your ALS diagnosis. It’s incredibly brave of you to share your journey with us. It must be difficult, but your determination and optimism are inspiring. SPG302 sounds promising, and I hope it brings the breakthrough you and many others are hoping for.

I’m so glad to hear that you’ll be paddling again this weekend, especially with your son there to support you. It sounds like a beautiful way to reconnect with something you love, surrounded by your family in such a special place. Wishing you a wonderful time and many more moments like this to cherish. You’re showing immense strength and courage—keep holding onto that hope!

2 Likes
#65

Thanks for the kind words. This disease has taken a lot from me. Walking is hard, so I use a walker. Paddling with my son happened a few months ago. I had to helped into the boat and out the boat. This spring, I will do it again, if I can.

3 Likes
#66

Your determination, and your honesty about the challenges can truly be a help to others. It IS HARD to say that there are losses; but it is admirable to persist. And you - and others here, I suspect - are doing just that: persisting, and with the grace to share it with others. Thank you.

4 Likes
#67

Thankyou!

#68

An explanation of ALS.

What ALS does is separate nuerons from the muscles. Parts of the body that it effects first are the hands and legs. At this point to my walking is suspect, I use a walker and a transport chair is coming. Also my balance is way off… I walk with my feet spread apart and take small steps. The walker helps s great deal. My hands are not as deft as they used to be. Fine motor skill are gone.

#69

The main thing that matters right now is getting into the trial. Has there been any progress.?

#70

Not yet

#71

Good luck with it.

You have to pull out all of the stops, make as many connections as you can, even political.

#72

Thats what I am doing.

#73

My how times change…would you have ever thought that you’d be in this situation 3 years ago… I’m only saying this cause I know how you looked forward to your gentleman’s campouts… I have camped with ScottB and others many years ago. Long time ago, we had meetups at Allegheny Reservoir

#74

Maybe at Raystown…

#75

A blast from the past! Never thought i would be in this situation, but I am. And I have to deal with it… Raystown was amazing, so many people and boats.
My “gentlemen” trips to Umbagog were many, and each trip different. Something I can’t do anymore…
You mention Scottb, I am a solo paddler, butbon trips, I probably paddled mire bc with Scott, than anybody else.

#76

For a number of years, when pnet was young, we had a good group of people that got together… Ness, Dave(her better half) Pyker, N.T., triplehexx. Ed (night swimmer), Scott, McCrea, just to name a few…

#77

Some have passed, but none come to this site anymore

#78

I will ask @MohaveFlyer if she knows anyone.

#79

Mjac, I have an appointment with Columbia Med Center in NY. They are one of the centers that isc dispensing spg302. There are a slew of trials, but all they is slow the disease down. Spg302 will reverse the disease.

4 Likes
#80

Does that mean you are in? This SPG302 sounds good.