And to add as far as FA is concerned. My wife let me know right away That meeting in a neutral place(which usually is a good idea cause you likely don’t really know the person) is very difficult if not impossible for someone disabled and in a wheelchair. But if you want a, relationship you have to take the risk just like anything you want to…[Read more]
If you’ve read any of my posts you probably already know how, I feel about Dr’s.
Just cause you go through the motions and get that piece of paper to hang on the wall doesn’t make you anything including and especially a doctor. As yours just proved they are more interested in themselves and their big paychecks than they are their patients.
After learning the hard way. I’ve learned to trap my wife’s legs between my knees so I can then use my legs to move her bottom half as I need to. Surprisingly how few people I’ve come across knows how to do this, even in hospitals etc.. When I first met my wife the first time I took her somewhere I couldn’t get her in the car and I, at that time,…[Read more]
Oh. The ramp is spring loaded and folds up with one hand and to test its strength I had four of us for a total weight of just over 600pounds and we lightly bounced on it. Her with her big chair is just under 400pounds. And just for peace of mind I have an adjustable sizzor jack for under the center of it as well and same Jacks as well for under…[Read more]
Another point to me achieving what I have!
DO NOT even begin to try everything on your own. Ask for help. Get help. Find a way no matter what and don’t feel guilty about asking for help, Not even a little guilty. It’s your right and everyone else’s duty to help whether your disabled or not. It’s part of being a part of humanity.
Whether it be from…[Read more]
When I was young people would tell me why are you wasting your time, or you’ll never be able to do that, etc. I used that as inspiration just to prove them wrong and I did.
Have to do it because you want it. And I mean WANT it.
DO it. Don’t just talk about it. Get off your backside so to speak and do it. You can because you want to.
Failure is…[Read more]
I used to teach martial arts. I used to tell students)(from my own experience) that everyone goes through ups and downs, some find certain things, easier than others and vice versa. Just like school…. Elementary you start at the bottom and hit 6th grade and you are at the top, then middle school, high school, college, work/jobs etc. These ups…[Read more]
People and even close family have not even a tiny clue as to what it takes to take care of my wife all day every day, not even the slightest of a tiny clue. And worse yet no one even cares enough to find out.
Even her own daughter that”took care” of her for a few months while I was away doesn’t have a clue. Her idea was to keep her in her room,…[Read more]
It seems like you have a lot of weight to carry when it comes to family. I can tell how frustrated you are and it sounds extremely difficult. I hope things take a turn for the better for all of you very soon. Thank you for sharing with us.
For my wife its:
-Empty ostomy bag(thanks to Dr a few years ago)
Thanks to the Dr, none of which she can do herself anymore.
Sorry I keep coming down on the Dr on most postings but… You really have to pay attention and be careful with Dr’s. This one…[Read more]
I realize it’s not exactly on topic but…..
Something that has always been at the back of my mind whenever we go anywhere. What if we broke down? I’m handier than almost anyone,
but what if it’s something I don’t have the tools(I keep quite a big tool box in the van) with me to fix? I’ve even changed a fuel pump, wheel bearing, water pump, etc.…[Read more]
Odd to me that you mention that.
I have always tried my best to see through my wife’s eyes and put myself in her position.
It wasn’t till I had my stroke about 9 months ago that I truly saw a glimpse of what she has been living. The left side of my body just doesn’t want to cooperate including being able to talk right. Though it has gotten better…[Read more]
I mentioned something similar on a previous post. Through my wife I have met several FAers and I’ve noticed that the ones (as they have gotten older) that had their spine fused have gotten along much better than those who didn’t. Obviously that won’t be the case all the time. Just my observation.
I’ve noticed the ones (over 40)that had their spine…[Read more]
First time I took my wife to the beach in her power chair I had to have 3 guys help me get her out.
She loves the beach though. I was able to lower her chair and tilt it forward enough so she could get her feet in the sand.
I was hoping (before I lost my shop) to convert one of her old power chairs into a track chair that could have gotten her…[Read more]
We had a guy out of the blue last year come up to us while I was fastening my wife’s chair into our van at a Pep Boys auto parts store.handed us $1200. I couldn’t stop crying to thank him before he left. We used the money to pay some bills and took the rest and that night left to take my wife to gatlinburg/pigeon Forge for a week.
Very few people…[Read more]
What I’ve been through I can say that there is no comfort that can be given other than actual help and in my case has been almost none from anyone in any way. Except the love of my wife. For several months that I couldn’t be with her because of her family I was ready to end myself on several occasions. My wife brought me back each time. At least…[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.