Afternoon all,
Well we are having a funny/bad day.
Graham is having trouble standing up, his feet don`t seem to want to touch the floor, they just flop about in mid air. What`s going on there?
Once he is up he is have a bad day balancing and walking too today.
Is it a case of the brain not connecting with the legs? Anyone else been there??
My balance and walking has been deteriorating since first MSA diagnosis (26/5/22). It's as expected for MSA but my physio therapist checks things out with me regularly, i.e. at least every 2-3 weeks. she referred me to wheelchair services in October so I have my power electric chair ready here in the house for the days when walking is too difficult. It takes some time to organise these wheelchairs and I have not got it yet but they sent me a manual chair for use now.
Has Graham been to see the physio yet ? Also don't forget with MSA a sudden deterioration of symptoms can be caused by a hidden infection e.g. UTI.
I am trying to delay the day we need a wheelchair indoors by keeping Graham as mobile as possible, he has physio which we pay for a couple of times a week, usually he does well with that, not so good today though. Tomorrow I have a visit from the OT as I think we need some more equipment. like you say deterioration is usually following some incident etc, but all seems ok. We will see what tomorrow brings!!
Other equipment to help minimise the risk of falling due to balance problem would be a good idea. e.g walking frame, rollator,one or two sticks. there is little point in trying to stay mobile when balance is very bad because ending up in A&E due to falling over and hitting one's head on the corner of the freezer buys no bonus points in wheelchair delay.
It's very easy to underestimate the accident risk in the home as it's familiar territory and you have lived there for years without problem.
I've had many falls, some with injury, and one thing I have noticed with MSA is that the instinctive fall protection such as putting an arm out doesn't happen so well. Reaction time and slower movements probably. Now when very wobbly I just sit in my riser recliner and only move to go to the loo !
I have to agree with Ken, avoidance of falls should be your first priority. The first sign of MSA for Jackie was an acute loss of balance. As a result she’s had to be reliant on wheelchairs since the start. The upside of that is, thankfully she hasn’t had the falls experienced by so many. So many people report that after a fall or hospitalisation, the symptoms appear to get worse.
The physio will help considerably, I assume you have found a Neuro-physiotherapist because that makes a big difference.
Take care, Ian
Thanks for your comments, we have rollators etc for in the house and all manner of other equipment to stop the falls, as we have had our fair share, as you say there is no reaction to put your hands out to help. Hoping OT can give me something to transfer Graham from one place to another, when his legs just wont work.
prepare for the worst and hope for the best!
Yes you do need equipment for helping him on the days you need it, and it needs to be practiced and in place on a better day so that it’s ready for the day it’s needed and you both know what to do. Embrace new equipment as a means to getting the best out of a more limited lifestyle.
yes, there are no brownie points for stoicism .Use a wheel chair as soon as it enables you to do anything you can't do without it, it does not follow that once you sit in a wheel chair it will never let you go. you can ride in a wheelchair to the park and get out and push it for a bit when you get there..much morefun than staggering to the kitchen and better for you....and your carer. All these things are aids not badges of shame. Just the opposite, they show you are not willing to give in without a fight
Hi
My husband who is approx 5 years into MSA diagnosis has started to have episodes when the legs just will not work, these are usually later in the day when he is tired. We have rollator and wheelchair. We had a visit from an OT last week and this week have taken delivery of an excellent piece of equipment called Sara Steady, it is a frame with seat which enables me to transfer him safely from one place to another. Hope this info is of some help to you.
Kind regards
Judith
having a bad day.
Back in hospital.
I don’t understand 
Rainy Day in Southern California
