Be extremely careful with the bowel problems. And what Dr you see. Almost cost my wife her life and we’ve paid dearly for it. She now has an ileostomy (it killed her large intestine and it had to be removed) due to incompetent Dr’s (plural) in two different hospital emergency rooms.
Since we have been traveling as much as possible, living in our little travel trailer,we have found very few places that aren’t accessible. The few, we’ve found are in older buildings that have yet to upgrade and I’ve mentioned it to nearly every place and they have all said it is in their plans for the near future. Even if that means going in the…[Read more]
I take care of my wife and occasionally, when time permits, in emergencies, another friend who has FA and I know one other person.
Not just eyes but hearing as well.
Which I agree with Karina. What’s the point of the study other than wasting time and money on a pointless, useless study that will not help anyone in any way except to line their…[Read more]
I could write a book on this subject…. If I had time. Stress relief is only a dream for me.
Being forced to live on less than minimum wage, for two,and caring for someone who is severely disabled,Someone who can’t do anything for herself.
Being 100% abandoned by All family and friends.
Eating healthy…. Not a chance.
Excercise…. Not a…[Read more]
Talk about bad timing. My first grandchild was born a couple days ago. She was a month premature. It will very likely be several months before any grandparents or aunts and uncles get to see her because of this virus.
I started drinking and going to bars with friends every weekend after high school.
I started in martial arts at 16. So, by the time I started going to the bars after high school I was a black belt and my so called friends would get drunk, start fights, and expect me to bail them out. So I stopped going with them.
That’s, when I focused on real…[Read more]
Problem is she isn’t ok . she went from doing most things for herself ….hair, brushing her teeth, most of the dressing , she had just started an business making jewelry , eating, going to the bathroom , getting in and out of the van , etc. Etc.
Now she is almost completely dependant on everything . it is a huge struggle for her to even get a…[Read more]
Since an ER Dr tried to kill my wife a few years ago, my wife is almost completely dependant on me for nearly everything. We have been basically been forced to live in a tiny travel trailer on less than minimum wage. So we travel a lot, as often as we can. Timing our travels between Dr appointments, which we schedule all at about the same…[Read more]
My wife takes oxybutynin. She still has the occasional accident, usually it’s when our schedule gets messed up. Her diabetes does influence it as well, if her sugar levels are too low in the morning she can’t go like she should and that usually makes the urgency in the afternoon come earlier.
My wife went from a regular fishing pole to a cane pole to an electric pole, with a big button that lays in her lap, that I made her. Of which I believe I posted a link to a picture of the pole in the fishing /outdoor activities (I believe it’s something like that).
On a side note along those lines. If you have a dog. I’ve seen people put blankets in the dog houses during the winter. Real bad idea. Absolutely can kill a dog and have seen it happen. Use straw, wool blanket or wool bedding material. you you can get it from a farmer or tractor supply company. Straw works like wool. Insulates and keeps moisture…[Read more]
There is a saying with outdoor type people, in cold weather …… “cotton kills”. Use as high a wool content sock as you can find. Preferably Marino wool. Or alpaca wool.
The oils from your body and the moisture in the air are absorbed by cotton and causes them to become cold. Wools naturally keep that from happening.
One time when I was a scout…[Read more]
Great way to relax, help with patience, self control, coordination and just enjoymemt. I even reload my own bullets….. Super relaxing. Lol
Glue a quarter on a stick and try to hit it. Lol indoor range probably won’t let you but most outdoor ranges should. Or on a calm day use a lit candle in a box. Or some clay trap shooting targets placed on…[Read more]
My wife tried to get herself out of the van by herself. I was carting in groceries that I had to get out of the way of moving her wheelchair. Just as I stepped out of the, house I saw it. She accidently hit her joystick and off she went off the lift before it was even half way down. Luckily she landed in grass on her side. That didn’t do any…[Read more]
I know I’m a different kind of a guy so I can’t speak for all guys, but I personally don’t like women with makeup(maybe a little lipstick or gloss). I much prefer to see you the way you are. To me it is extremely rare to find a woman that looks better with makeup and way more times than not I think it makes most women less attractive.
That and I…[Read more]
Made my wife into a peacock one year. Got some real peacock Feathers, used a styrofoam(craft/or florist) ring cut in half, poked really long ones in and glued them in place. Attached it to the back of her chair(still have it hanging on her daughter’s wall above the tv) . Attached smaller ones to her feet and various places on her chair. Got her…[Read more]
Made parts for and/or worked on literally everything from steam engines to the space shuttle. Designed and built a small car from scratch(over52mpg), small backhoe from an old garden tractor , electric fishing pole, and numerous(too many things to even remember) other things.
Had designed a track driven wheelchair (for off roading/hiking) for my…[Read more]
I made one for my wife that mounts on her armrest. It is solid aluminum and can flip down out of the way. Made it to fit the good tervis cups with the handles. No plastic. It has taken a beating for several years now. I wanted to make and sell them cheaply, until I lost my shop that is.
Since the Dr tried to kill my wife she isn’t even able to reposition herself anymore. So pressure sores are a very real threat and I have to keep an eye out at all times.
I keep a good $400 seat cushion under her, even when I put her in a manual chair. Best prevention is to make sure that clothing is not bunched up or that you are sitting on any…[Read more]
We had experience with concert venues before, how hard it is many times to get wheelchair accessible seating and it took a class action suit to at least somewhat fix it. So I didn’t even try.
With the seating it is with buying tickets it’s first come first serve and for wheelchair accessible seating they made you fill out forms and wait sometimes…[Read more]
Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
This site is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.