I HAVE BEEN TO PHYSICAL THERAPY SEVERAL TIMES FOR BALANCE AND AFTERWARDS,THE FATIGUE WAS OVERWHELMING.PLUS THE INDUCED SPACTICITY.
I USE A CANE FOR BALANCE,ON A BAD DAY MY WALKER AND I HAVE TO USE A WHEEL CHAIR FOR DISTANCE.
I SEEN MY NEURO-OTOTOLOGIST AND WE DISCUSSED MY BALANCE ISSUES,HE STATED,VISUAL,HEARING AND LEGS ALL NEED TO WORK AS A UNITY.
I START PT NEXT WEEK,NOT FOR BALANCE BUT MUSCLE STENGTHENING AS I HAVE DEVELOPED ATROPHY IN MY LEGD,NOT FROM DISUSE,BUT NEEDING THE LEG BRACES.
THE SCRIPT TO PT STATES TO BE CAUTIOUS ABOUT ELICITING SPASMS AND NO BALANCE TRAINING.
I JUST HOPE IT DOESN'T EXHAUST ME
Craig can still walk without assistance. He doesn't walk far though and then his legs get spasms which force him to stop and rest. About two blocks is his limit. He could not easily make it through a store without pain in his legs and soles of his feet. He will hold on to a shopping cart at times too.
I do remember that Craig had worse spasms in his calves and front of his calves after the balance exercises.
Is there a college near you that may have a student who is available to help you in the evenings? I'm glad that your mom can help during the day. Craig's brother comes to help us.
Craig is very fatigued now that he is off the LDN. Provigil makes his blood pressure go too high. He has hypertension controlled by meds. The LDN was making his spasticity worse so he is off.
Keep in touch.
Thank you for your post. You said some things that sound like me. I am so fatigued after doing these seemingly very easy exercises.
I have developed spasms or tremors after doing very few of these exercises. These are fairly new, within the past couple of months.
My balance was a tiny bit better today but I am feeling better today than I was at the last appointment. I got a goodnites sleep last night and I think that helps. I told the PT I had rested well last night, which is rare.
I can not stand in one spot. I hold onto whatever is available. I have my rollator in the house and using it now. I am wondering if I will feel less tired if I use it for support.
It takes a lot of energy to stay balanced. I am a strong person. My upper body strength is not what it used to be but I am still pretty strong.
I used to be very active. Volley ball, swimming, soft ball, horse back riding, track, climbing trees, riding bikes.......constant motion. I told the PT today now I can't get off of the floor easily and I am not very overweight.
My mom has started coming in to help me. I am trying to figure out how I can get someone else in here to help during the dinner bedtime period of the day.
My husband works second shift so I am on my own during those hours. If I don't take my Provigil I am sleeping so much. Not good.
Can Craig still walk without a wheel chair? That is my big fear. We live in a quad level house and the walker is not really realistic either.
Well, Craig went to PT for most of the summer and each time they tried to work on balance, but he never really improved. I think it is because the poor balance is coming from damage to the brain, and how can they actually correct that?? I'm not sure they can.
He also complained that his legs hurt after they tried to work on balance. They tried to make his legs work harder at keeping him up when trying to balance, so it ended up hurting his leg muscles.
I am so sorry that you are having troubles. I know it can be very frustrating. How are you able to keep up with your dear children??
To answer your question about walking, the same goes for Craig. The center had several therapists watch him walk unassisted at a good pace, yet he has horrible balance and gets spasms if he stands or walks at a slower pace. The general opinion at the center for this was that you use different muscles and nerve pathways to walk quickly, walk slowly, and stand. And different parts of the spine too. So you may be able to walk fine, but have very poor balance.
I hope this helped. Take care of yourself!