Good morning Ken. Welcome to the group. IBM is quite a desease to put up with but if you have the equipment to make things easier life will be a lot better. In my case there is no pain just disconfort. You say you are a planner. I don't want to discourage you but there is a lot you can do to make your situation better. I went into the archive and dug up two old post i had posted a while back. It describe a little how I am coping with this. IBM is a slow deterioration but the years have a way to fly by. Email if you have any questions. Good luck Every one has their own way of coping. Leo #1 Good afternoon I posted the list a while ago but it didn't show on the site... Here is another try
Get a cane or two....
Install toilet safety frame lift support rails
Install garage door opener
Get a cell phone
Install hands rails where needed
Install half steps on the stair steps
Install spacer to raise the toilets
Rework the desk for the computer
Rework the bathroom
Adjust the high limit on the valves for the water temperature so that you don't get scalded by home care workers
Move things so that you can reach them
Get a shower chair
Get a sliding seat for the shower
Get some kind of communicating device so that you can call for help at any time.
Keep a list of phone numbers you can call (the more the better)
Get a scooter
Get some saddle bag for the scooter
Install a cane holder or get a folding cane
Rework the entrance to make it level
When company moves things around make sure they put everything back before they leave
Install lift to get inside the house with the scooter or a wheelchair
Get an adjustable electric bed (A good one)
Get a wheelchair
get a modified van
Get a six way support for the seat in the van
Get a safety post by the bed
Arrange for home care
Change door handle to lever type (specially the entry door to the house)
get an electric seat lift for the toilet
Install ceiling lift (Got a four post system installed in the bedroom and a single rail for the toilet and shower)
Move light switches and plugs to make them accessible
install remote door locks
install door opener on the entrance to the house.
Get a 911 phone
Check for later need for residence (nursing home)
Get papers in order
clean up... Get rid of unneeded stuff as soon as possible
get house ready for sale. Leo
#2 Good morning. I haven't heard of remission either... Some stages makes us realize that things are deteriorating. When we go through them we think that maybe it is getting worse almost all of a sudden... But then the time from that to the next hurdle gives us the impression that it has stabilize.
The first one is when we start using a cane...
The next one is using a rollator.
Then we start avoiding all public washrooms... (The seats are too low)
Then we start installing grab bars wherever we need them...
Then a modified van, make life easier for some of us...
The next one is a spacer under the toilet. That is only the first step...Soon after we start using a high seat... then an electric seat
Then a lift to get in and out of the house...
The next one is we avoid stairs at all costs
Then we start using a scooter
Then we don’t go visit anymore as very few houses can handle wheelchairs and scooters.
Then a hospital bed
Then we quit walking all together (Too dangerous)
Then we start using lift for some transfer
Then disphalgia start causing serious problems Eventually a "PEG" will be necessary (That is way down the road)
Dressing by now is almost impossible
Driving ability has to be reassessed all the time.
Transfer from scooter to bed to driving seat becomes more and more difficult making the change from scooter to wheelchair necessary.
Modify the van to allow driving from wheelchair
eventually moving to a nursing start looking like a good option
all troughs this typing gets more difficult
You see there is a lot of adaptation required to this disease. I am not one to stay home and stare at the wall. Everybody have their own way to cope. I guess doing all those things is my way of not giving up. I get up in the morning pushing buttons and it goes on till I return to my bed... I wonder what the next hurdle will be... Leo
Leo