How to improve home for illness/easier living

Discussion in 'Fibromyalgia Main Forum' started by sues1, Oct 7, 2006.

  1. sues1

    sues1 New Member

    I was just DX for probable Parkinson's Disease. I am optimistic about it.

    I got to thinking of things that would make it easier if I do have it. Also things I should take care of while I can,as it could get worse.

    My bed is a little tall for me and already on a low profile box springs with a hollywood type frame (metal with wheels). So I need to lower it. I wonder on best way. I already have a slight problem getting in and out of bed, because I am 5ft. tall.

    I wonder what type of a bedside set up would help for clock radio and lamp and kleenex. (My staples). I could knock such over easily. I love listening to the radio.

    My mother had PD. She and my step dad had moved in with her mother. Grandmother was told by Dr. that she would have to go to a nursing home if no one stayed with her. So with Mom's illness it was a win-win situation. Bless my step dad that babied them both. Plus worked.

    Mom did not have a side table that she used. But I know that she did not have much control in moving steady.

    Any ideas appreciated. Not being negative but I want a positive set up if needed.

    Yes, I have CFIDS/FIBRO. Thanks.........Susan
  2. 69mach1

    69mach1 New Member

    i was thinking that maybe an occupational therapist maybe of help for you...

    i knew of a man here in novato...they called him the judge....cause he was one...and darn it all he had pd...
    but he had his pookie to take care of him...he loved to come down to this local bar and have a few drinks...

    he would ask me out for a picnic...on the beach..i said i don't think your wife would like that...he said who cares at my age...he was well into his 80'

    anyways///i just don't have any other ideas...

    i know my aunt would forget she already peeled potatoes to mash...but crap i do that now...

    i think there is a board here you could hit up..on the message board maybe they may have some answers...

    i know my aunt has to use one of those monday-sunday pill box to help her...but she is also she has him to watch her and help her some...

    are you living alone completely?

  3. sues1

    sues1 New Member

    I did not think of a occupational therapist. Long time ago one was at a Cfids support group meeting. I am also tracking down nearest PD support group.

    Forgetting some things is normal. Some that I do here and there I know if Fibro Fog. We know the difference.

    I am a lone part of the time. DH has a semi and goes all over. He has asked me many times if I want him to work close to home and be here every night.

    He understands when I tell him that he wears me out when he is home all the time. I work harder and also on keeping a happy face all the time, etc. I feel guilty when I nap and such. He loves to go go go. I just can not. He is very good to me and will do lots around here. I enjoy him, but aloness also has its perks. LOL.

    But anything that helps me to keep some independence and control is important.

    My children all have homes of their own. I can call them, but I am stubborn about asking for help unless realy needed.

    Thanks again.........Love, Susan

    PS....Wamps I have been on boards for PD but not much luck with responses.
    I was on the phone with a man about a support group in a near by town. His wife was listening and said that there is several new promising drugs out for PD. Great news!
    [This Message was Edited on 10/08/2006]
  4. butterfly8

    butterfly8 New Member

    I am very impressed with your post and the attitude you have to your illness. I'm sure that such a positive outlook, even when you have down days, is going to help.

    Is there a support group, either from a govt. agency or church, or whatever, that could come and check out your house and provide suggestions - and sometimes conversions/ equipment that will make your like easier?
  5. sues1

    sues1 New Member

    Thanks for your ideas. They are good ones. There is no board like this one. Everyone is so helpful.

    Today has been a good one. No real tremors and jerking. So meds must be helping? That is good. I feel pretty good also.

    My right hand and foot will fly out somedays, nvoluntary.I told my DH that if I hit or kick him some day to know it was not on purpose. <grin>.

    In reflection. I've had FIBRO/CFIDS going on 20 yrs. I have been in training...LOL. There is not much to take way anymore. But I also am able to accept easier because of that. There is people out there a lot worse off than I am.

    I am blessed. Blessings to you................Susan
  6. hugs4evry1

    hugs4evry1 New Member

    I'm so sorry for your new dx, you can always stick with us here too. I know it's not the same, but many of us are a bundle of bungling fingers too so we may be able to help.

    One thing I was thinking about your bedside table is to add a serving tray underneath the lamp, tissues and alarm clock. I did this on hubby's side just because the tray was pretty and it works.

    But it would also help those items not to fall off or roll behind your bedside table. (I keep chapstick, lotion and a few other things too so I never want them to roll off.

    The other thing I was thinking about with your bed (if hubby doesn't mind) is to just do away with your bed frame altogether.

    When my dear friend was bedridden with her 4 bad disks, (they had also dx her for the MS but didn't translate and tell her) I went to her house and redid much of her room to help make her comfortable. (She's also about 5' tall)

    It really helped her to get into and out of bed when it was just the boxspring and mattress right on the floor. Just right for her height. (Her hubby didn't like it but poo on him, it's not his back in pain)

    Or you could get a nice sturdy set of wood/carpeted pet stairs to match what you have in your bedroom. That way you could just step up, turn around and get into bed much easier.

    If you haven't already thought about one, look into the Roomba vacuum cleaners. They are a wonder for me as you just push two buttons and watch them work. Mine even works well with my long haired cat, and small dog.

    Try to learn that it's OK to ask for help. We all need it sometimes and I'm guessing that it might help your husband to know that he doesn't have to just watch your struggles. Let him feel like he can help you, we all like that feeling.

    I'm glad you're feeling optimistic....and TG for Michael J Fox and his raising both awareness and funds for research.


    Nancy B

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