Just because they claim it's helpful doesn't necessarily mean that it is?
What are your feelings about this?
The only thing that has helped me is fixing my gaze onto something to help me balance. Apparently I use my eyes a lot to help me balance (which I didn't know before I saw a physiotherapist). The exercise he gave me was to fix my gaze onto something whilst holding on e.g. the corner of kitchen worktops and then let go and turn my head to the left, then bring back to centre, then move head to the right and bring back to centre again. I found this very hard and it was like standing on tightrope at first. This exercise is supposed to help with balance.
Does everyone have balance problems or is it just me?
Hi PCM,
Thanks so much or responding! It's good to hear from you!
Balance seems to be a big problem from the Fibromyalgia patients through to autoimmune and neurological disorders. I have heard of others who tried everything else, and finally had a PT work with them and correct the balance or vertigo problems with the very same exercise!
Though there is no question that I was heavily genetically predisposed for autoimmune, I feel it was the last rear ended car accident that set all this into high gear. I had terrible problems with vertigo after this, I would have to grab onto my husband to keep from going down, a few times nearly ripping his clothes off! ha! We still laugh about that! My Chiropractor was able to get me through this. The first med that I was given for nerve pain, Neurontin, made me absolutely reel, so that was also a contributing factor, though stopping it did not totally aleviate the problem.
My mom is 6 months through a broken hip ordeal, the PTs that worked here at home with her worked on her regaining her balance, in several ways with great success! After she had mastered some of the exercises, they had her do them with her eyes closed to improve her balance, and I'll tell you, I could not do them! They were excellent, however there were a couple of times that they had to be reminded that she is 81 years old!
So please allow me to warn you all about prowling around in the dark! Had she turned the light on, she would not have fallen! I know it made me much more cautious! There is no doubt in my mind that we are breakable!
Thanks again, I look forward to getting to know you!
Wishing you well,
SK
Hi SK
My CMT was 'triggered' by a fall on my marble bathroom floor when I lived in Spain. Looking back I now realise there were signs even as a child. I could never ride a bike and had to hold someones hand walking on the sea wall etc....
I had a fall before Christmas and that was entirely due to turning off a light without having sufficient light to get me to the next room. I won't be doing that again!
Yes, looking back I see it too, PCM! I always needed more sleep than anyone else, took me much longer to get over a flu or injury than 'normal people', I loved dancing and gymnastics, but always had trouble with my lower back, and of course there was the big Rheumatic Fever diagnosis that scared my mother half to death! They said I grew out of it, and there's no sign of heart problems, but there it is just the same! I mean 5 years old and I had to be kept calm, no running allowed! I'll never forget it, even though I had no understanding of it. Now here's a thought on that, I lost BOTH of my grandfather's when I was 5 years old, now if that doesn't make your heart sick, what would?
yes, I wanted marble, or some kind of stone flooring, in our bathroom, my husband refused, said it would be like an ice rink! He is right, of course!
There are more lights on in our house at night, all night, than ever before! We don't need any repeat performances of that fall, it's a wonder she lived through it, as there is a huge Mahogany china cupboard that she just missed driving her head into! Ah, we're never too old to learn that we're breakable!
Good hearing from you!
Wishing you well,
SK
Take care SK :-)
Occupational Therapy: I have never used it, but I know people who have and have had good results.
Balance: That is a common problem with CMTers. There are many tales of falls, and many jokes about frequent gravity checks and that the ground looking so lonely that it needed a hug. But falling in some places, such as bathrooms, can be dangerous and is a danger even to people without any ailment. So grab bars in showers and above bathtubs are a very good idea for all people, particularly those with CMT or other ailment.
Hi John,
I agree with you on the grab bars, my husband installed a few for my mom, but you know, they are helpful to me as well! We were fortunate that the therapists helped us to decide the proper placement of those bars too!
When my mom came home from the nursing home, still unable to put any weight on her injured side, and not being able to bend her leg/torso more than a 90 degree angle, I could not get her feet over the tub. I met with each PT and OT and their superiors, the home nurse, and none could help me. They were putting her in a shower chair that sat low with no arms, so she could not get out of it. Now let me tell you, had it been summer rather than winter, I would have just put her on the deck and bathed her, but it's the dead of winter. So I finally got the idea to use the adjustable potty chair with arms, and sit it sideways in the tub, and wash her feet and legs in a bucket. Of course there was mopping involved, but hey, it worked!
LOL! I had to laugh at the humor of the gravity checks and especially of the floor needing a hug! Never heard that before! We just cannot lose our sense of humor! Thanks for the laugh! good to hear from you!
Wishing you well,
SK
l am at a point in my life where l must do exercises daily or risk deteriorating. l have always had back issues and they are not getting better by themselves. l had a car wreck which led me to my first hip surgery and then 16 months later had the other hip done. Now l am working with PT on my shoulders to possibly not have surgery on them. l have been doing water aerobics off and on for years but do notice it more and more than l feel terrible if l don't go regular. l guess this is more conditioning than therapy, but it must be done with stretches daily.
Hi tga,
I just went through my mom's tumble down the stairs, in the dark, and breaking a hip, 6 months later she's still on a cane. It's as close to understanding as I hope to get, though my right hip has been killing me for sometime! You've been through a lot, and I am sure the exercising is difficult, but the more I read, the more they swear exercise can prevent or drastically delay major joint replacement!
I know that too much sitting or laying around for me as an arthritic is bad news, it just locks me up, and weakens me! Every time I think I'm getting out the weather turns bad. Cold with pouring rain earlier, and it's actually SLEETING right now, so, of course I'm suffering! It's already been in the 80s and tonight it's to be in the teens! UGH!
I hope that your PT/OT is a huge success for you, I know they made a huge difference for the better with my mom!
So nice to converse with you! Hope to get to know you better!
Wishing you well,
SK