Art Deco
Well-Known Member
- Region
- USA
- City
- Selinsgrove Pennsylvania
That's the way it is supposed to be ... /singing/
Another new TQ motor: hpr40
- Thread starter Calcoaster
- Start date
Watana Bob
Well-Known Member
- Region
- USA
Holy cow Catalyzt sorry to hear of your troubles and wishing you a speedy recovery. I can relate to the issue of trying to learn how to eat again, my wife went in for an MRI this past April to try and find out why she was experiencing hearing loss in her right ear, well they discovered a very large tumor (meningioma) wrapped around the brain stem and right side of the brain. Long story short, we ended up in Seattle the end of May for an 8 hour surgery, and let me tell you when they open up your head and mess with your brain it is serious business. Lots of nerves that control a lot of things located there and they do not like to be messed with, result was right side facial paralysis along with vocal cord and throat paralysis, so she could not swallow causing aspiration and insertion of a PEG tube. It has been almost four months now and she is just now beginning to eat small quantities of very soft foods, with lots of coughing involved. I have been tube feeding her since we returned from Seattle and it is very time consuming to try to get 1800 calories of liquid nutrition (I call it soylent green as it comes in a green carton) into her over the course of a day. Things are starting to look up though as she can get down about 300 calories of soft food now. The doctors said that it can take a year or longer for nerve connections to regain function, so it is a long road to recovery.
This was going to be my summer to ride, I bought that new Creo 2 SL last fall three weeks before freeze up and was only able to ride it then and about a month this spring, starting about two weeks ago I was able to start finding a small window of time here and there (1/2 hour to an hour) that I could get away and go for a short ride. And now we are three weeks until freeze up and icy roads, another summer shot. Such is life, you never know what is coming at you, ride while you can because you never know when it will be your last time.
Wishing you well and a full recovery Catalyzt.
Stefan Mikes
Gravel e-biker
- Region
- Europe
- City
- Mazovia, PL
Saw that. The main guy (the son) seemed a bit of a dick. Like he'd never heard of all the lightweight motor developments in the last 4 years. I thought we had got past this looking down on e bikes attitude. Or the way he never told his mum that there are 3 assist settings not just eco so he could catch up to her.
stompandgo
Well-Known Member
- Region
- USA
Mum smoked him in the end. Justice was served.
Jeremy McCreary
Bought it anyway
- Region
- USA
- City
- Carlsbad, CA
Yes, odd that a professional cycling journalist would be so behind the times in his thinking on ebikes. From his accompanying Cycling Weekly feature article — interesting and well-written, I thought — sounds like he tried a simple all-or-nothing cadence-sensing ebike years ago and wrote off all ebikes at that point, never to revisit them till he got the Canyon e-road bike for mum.
This from a guy who knows full well how fast cycling technology progresses. However, he fully admitted that in the article that the Canyon had changed his entire outlook on ebikes. So I'm counting the whole episode as progress.
BTW, I just became aware of Cycling Weekly last week. Read a dozen or so articles and plan to follow it now for a while.
Catalyzt
Well-Known Member
- Region
- USA
Thank you for sharing your wife's story; I can't (and don't intend to) offer any medical advice, though I can offer my own experience, hope, and encouragement. I hope she has a speedy recovery, and IMHO, you are a total badass for supporting her in the way that you do.
They wanted to fit me with a PEG tube, which became a source of great conflict between surgery and speech pathology; for your wife, I'm sure neurology is in the mix as well.
Every kind of swallowing disorder is different. I think it is great that they are allowing your wife to eat some soft foods, and it's great that she can cough up food if it starts to go down the wrong way, so long as the aspiration risk is well managed-- and that's fiendishly complicated depending on the type of dysphasia one has.
I've had a slow, progressive dysphasia for at least 30 years, and as bad as that it is, it's given me time to develop compensatory strategies. Once I fired the speech pathologists at my hospital, and started with a better team at another hospital, I explained this: "Look, for me, food can penetrate my windpipe without aspiration. Food will linger in my esophagus for 40 minutes without clearing; that's not a problem, because it always goes down the right way. I've never had pneumonia. I often wipe out body boarding, and have my whole sinus cavity, throat and esophagus fill with salt water, and expel it successfully. Please evaluate my swallow test based on aspiration, not penetration." That worked, and I'm eating about 1800+ calories a day now, and slowly gaining weight-- four pounds in five days.
My problem was that based on my swallow tests, speech pathology felt my odds of ever being able to eat again (I was intubated due to cardiac arrest during hemorrhage) were low to moderate. However, I knew they were wrong-- that was totally crazy, backwards. In fact, I was losing weight AND my swallowing muscles were atrophying while I was on nasal feeding! (Just one reason it's great your wife is restarting!) I was very, very lucky my tube fell out on its own; now I am eating solid food and progressing much more rapidly in my recovery.
A bad speech pathologist will believe that the swallow test radiography tells the whole story-- what I call working the checklist and not the case. This is not true; the literature I said supports the idea that the decision to restart solid food (and how, and at what speed to progress) should be made based on the swallow test AND an overall, holistic assessment of the patient's health.
The PEG tube food, as disgusting as I'm sure it is... I get the sense that it's better than the nasal tube food. Still, if your wife is feeling weak, or has other issues with other parts of her recovery, sometimes you can work with the surgeons or GP or other specialists to figure out if there are nutritional deficits-- and compensate for those, either by adding something (with medical permission) to the feeding tube or by including it in those 300 calories. For me, I was lucky; my GP said, "You are anemic, put bone broth in the tube" and then when I ate solid food, I increased the protein as much as I could. It was like being shot out of a cannon-- I went from 600 steps with a walker dragging an oxygen bottle to half a mile, with hills, no walker and no oxygen, just a cane, in about 10 days!
You probably know this, but it is totally normal to have setbacks-- both you and your wife-- bad days when things get worse, even times when you feel you can't go on. Face the thought, let it happen, and move on.
I have never known fear like what I've felt in the last two months, or had to train as hard for any physical challenge. I'm very lucky my wife, and friends, were so supportive, though of course conflicts happen, too-- friends may disagree with medical advice, or each other, or you. My attitude was, so what? If you showed up for me, if you cared, it doesn't matter if you said or did exactly the right thing. We're all pulling in the same direction.
Sorry for the long rant! Hang in there! Including you and your wife in my evening prayers and secular positive thoughts, sending all the strength, courage, and hope I can!
Watana Bob
Well-Known Member
- Region
- USA
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.
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.
