Another new TQ motor: hpr40

[Catalyzt]

Thank you for sharing your perspective Catalyzt it is helpful to know how others have dealt with this situation. Fortunately my wife and I are relatively young, she being 68 and myself 69. She also was physically fit prior to the surgery which has helped in her recovery, unfortunately though it doesn’t speed up nerve regrowth. I appreciate your complimenting me for caring for her, it is the least that I can do as she has always been there for me in the past plus when we got married 41 years ago part of our vows included “in sickness and in health”.
The swallowing issues are all to familiar to me as I have a late onset form of muscular dystrophy (thanks mom) known as OPMD (oculopharyngeal muscular dystrophy). It affects the eyelid muscles, throat muscles, and the proximal muscles which are the glutes, hamstrings, biceps, quadriceps, etc. Offspring have a 50% chance of acquiring it from a parent with the genetic mutation, I drew the short straw as I have two brothers and a sister that are not affected. My swallowing has been getting increasingly more difficult, I have to chew things very well and it takes me about an hour to finish dinner. Your advice on protein is spot on as within the past year I have added about 20 grams a day and I have had an increase in energy. I’m sure there is a feeding tube in my future, my mom had one the last year of her life, not looking forward to it.
Getting old blows, I want my 35 year old body back! I guess the best we can do is just keep moving until we can’t.
Best to you Catalyzt, hoping your recovery continues well.

Whoa... Just looked it up. OPMD is pretty obscure, though it shouldn't be. I was lead writer on the New York MDA Jerry Lewis Telethon for 10 years. (I'm not credited anywhere, fortunately, except in the credit roll at the end of the show.) We should have done a spot on it. We did spots on Duchenne, ALS, and most of the others, the names escape me now. (I am your age, and this was back in my 30s and 40s.)

My take on rare diseases and some muscular diseases: Some of the diagnostic categories I do not trust that much, and I don't always trust the prognosis. I have seen, with my own eyes, patients recover from very severe multiple sclerosis that has recovery rates in the low single-digit percentages. I've seen ALS patients who lived FAR longer than the outside estimate for survival, and have good-to-decent quality of life until the very, very end.

My illness has the opposite problem. Conventional wisdom used to be that once your antibody was positive, you always had the illness. That, I think, was the correct way to think about it. But slowly, this has changed, so that now, if the antibody goes back down to normal levels, you are considered in remission. 30% of us supposedly go into remission by this new thinking. So... why have I only met TWO patients with my illness who are over 65? I have scoured every support group and every forum. My guess is that they died of the autoimmune disorder, but it was classified as something else. (One patient was really upbeat and rode motorcycles. The other was, like, 'I'm ready to die now.' Sheesh!)

Anyway, there may well be a feeding tube in your future, and if that's how it works out, doesn't mean you did anything 'wrong.' But maybe you can kick the can way down the road. Compensatory strategies can get you a long way.

Oh, BTW -- an hour to finish DINNER? You are a SPEED DEMON compared to me! (And I'm about your age.) I take an hour to eat a sandwich and about an hour and 20 minutes to eat dinner! (And I'm still gaining weight!) It we're including dessert? Make that an hour and 45 for me.

I don't know your illness, I don't want to be toxically positive, I'm just trying to cheer you guys up!

I got the Canyon GRIZL out of deep storage in the closet today. I'm going out this week-- probably just riding in circles around the cul-de-sac. I know eBiking helped keep me fit enough to survive my recent ordeal.

Dragging this post back vaguely on-topic, it really helps to have a lightweight bike when you're recovering from an illness... just to get it out the front door, if nothing else!

And I love these small motors. As I was telling our handyman today as we wrestled the bike to a more usable launching spot: My wife will insist on refurbishing her acoustic bike, no matter what the expense. Then she will try riding it around the Hollywood Hills.

Then, I think, we'll make an eBiker out of her yet!

 

[Rás Cnoic]

Phew! Prefer their perfect lightweight motors! You chaps get an (ever so small) shout-out in the next vid btw.

Tut tut Yako

Very comprehensive full review. You've got a real easy going knack for presenting.

Bet the edit was fun, all those little detail close up shots!

I'm going to have to rob the post office to get hold of that bike. It ticks every box.