alexwillson

Yes!! Sometimes my daughter gets mad at me for helping her, saying that I think she can’t do anything on her own, and sometimes she gets mad at me for not helping her enough!! I feel like I can’t win either way…. And, like you I am a 2 on the enneagram and helping is my love language but I also have a need to be appreciated which doesn’t happen…[Read more]

Coughing’s been annoying more and more lately. I suspect it has something to do with progressive loss of sensory nerve tissues that innervate the epiglottis. Basically, my brainstem or cerebellum is losing it’s ability to sense when the epiglottis should close (rapidly, like any other reflex).

I wonder if I should adopt some sort of swallowing…[Read more]

My family notices so they often help so I’m less stuck. Most times I just need to lay down.

As for the winded part, get your iron checked. Mine was critically low which made me exhaust faster h

I have photophobia, made worse with migraine. I can actually get my vehicles tinted illegally with a waiver. I’m not sure if it has anything to do with Freidreichs Ataxia Or not. But the photophobia is bad enough I tend to avoid going outside during the day.

@christina-logan honestly I never even looked tho I really need to! Thank you!!

Choking is common with ataxia. I did a swallow study and found that my esophagus is paralyzed. I was told a speech pathologist can teach you ways to avoid it, not curing it but teaching methods to reduce the risks. That said, I do not see a speech therapist due to the expense even with insurance (my sons medical issues are priority).

Christine, it’s a pain pump placed in the spine that delivers meds directly to the spine allowing them to use a much lower dose while coating the nerves in the spine, so it works much better. I’m going to be starting the process soon since oral meds work for a little bit before they need to increase doses.

I usually cannot sleep long or spasms wake me up. They begin in my neck and end in my toes. I use dilaudid and stretches ( sit on bed, feet touching & legs bent, then lean over til my nose touches the bed). But honestly, nothing has helped majorly. I’m going to see my pain doc at UNC for an intrathecal pain pump.

My caregiver knew me best but she is moving on so I pray I will find one just like her, after 7 years 😢 but I need to stay positive and keep looking, any suggestions where I could look, I am Canadian so my selection might be different then yours!

Hi Christina l to have leg cramps and during the night I just bring both my legs up against my chest for the count of 100 and every morning I grab of a ankle and pull it towards my head for the count of 50 I can hear little cracks so I must be stretching for the good of my legs🙏🏻

Hi Frankie, that is awesome you adopted a dog, I just recently adopted a cat way less maintenance and chasing a dog around seems to much for me, but best of luck, I have always been a cat man lol

My home is getting a young German Shepard before the year’s end. A costly one. Yay. We already have 3 ferrets, 2 tarantulas, and a snake. I don’t even actually like animals, but the wife and son do. So after some mental gymnastics, I found a reason for a dog.

The goal(s) is that my son (11 years old) gains more responsibility, the practice of…[Read more]

Hi Lichi
Download Telegram App to participate in ongoing chats …I have just joined recently myself
https://t.me/joinchat/J682xhFAMTiMpCo3Of5PXQ

Also Facebook
https://www.facebook.com/groups/2601479636546565/

Ok I have had high lipids for a very long time. I tried diet and weight loss yet it continued to climb. It’s genetic so if your parents have it, you’ll likely acquire it as well. I was put on Lipitor 20 mg at night and it has dropped my levels to normal. Good luck!!!

Hi can anyone give an update on how progressing with this drug

1. Exercise – I really focus on my legs and core. I do this about 5 days a week for about an hour.

2. Eat right – In addition, I intermittently fast for 12-18 hours per day.

3. Win hof method – cold showers and breathing exercises.

4. Learn another language – I spend 10 minutes a day on thus and am really just training my brain. I use duolingo…[Read more]

Yes iam 47 now but my right ankle has buckled since forever, I can still use my left to do a pivot transfer, blessed with that capability, use a wheelchair 24/7

Yeah, the degeneration is mostly among certain afferent nerves that have looong sensory axons reaching from certain nuclei just outside the cord (dorsal root ganglia — DRG). The axons innervate muscles and pass sensory data of when that muscle fiber is relaxed to itself (i.e., resulting in spinal reflexes) and up to the cerebellum, which rapidly…[Read more]