Sorry for my absence for a while but we seem to have been really busy coping with the day to day.
Not a happy week here as we are waiting to find out if our daughter's housemate has Covid - also if my brother, coming back from Italy tomorrow, will be in any fit state to join us.
Concerning my MND, we have 4 issues at the moment including a wheelchair that hurts me when I sit in it, a shower chair that is supposed to go over the Closomat but does not, a problem with getting out of bed despite our new profiling bed which raises me up to vertical to sitting but still needs my wife to pull me up a bit which hurts her back and finally a need to really sort out my technology because it's not working for me at the moment.
Don't get me wrong, we have some support for all of this but it is frustrating having to deal with so many different people and it being a real management job which I really should not have to do.
As to my development of MND, I'm still walking with some help and am seeing the respiratory team for one of my 6 monthly visits on Weds to check out my breathing, where I do seem to be getting short of breath as I become more and more unfit. Blood oxygen level still good.
Hope you are all doing as well as you can?
Not a happy week here as we are waiting to find out if our daughter's housemate has Covid - also if my brother, coming back from Italy tomorrow, will be in any fit state to join us.
Concerning my MND, we have 4 issues at the moment including a wheelchair that hurts me when I sit in it, a shower chair that is supposed to go over the Closomat but does not, a problem with getting out of bed despite our new profiling bed which raises me up to vertical to sitting but still needs my wife to pull me up a bit which hurts her back and finally a need to really sort out my technology because it's not working for me at the moment.
Don't get me wrong, we have some support for all of this but it is frustrating having to deal with so many different people and it being a real management job which I really should not have to do.
As to my development of MND, I'm still walking with some help and am seeing the respiratory team for one of my 6 monthly visits on Weds to check out my breathing, where I do seem to be getting short of breath as I become more and more unfit. Blood oxygen level still good.
Hope you are all doing as well as you can?
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