Does anyone else need to use a wheelchair???

Discussion in 'General Health & Wellness' started by moocow, Jun 5, 2004.

  1. moocow

    moocow New Member

    I'm new to this site and rather nervous. Only ever e mailed friend before. I've suffered from FM since I was 13 months old and have had CFS for the last 10 years. I was wondering if anyone else has to use a wheelchair, because of how bad their illness is?
  2. moocow

    moocow New Member

    Hi Brenda.
    Thanks for your reply. You are the only other person i have talked to with FM. My health has been so bad i have had to use a wheelchair for the past 11 years (I'm 38 now) I have two children 16 and 14, and life has been a struggle. I have read lots of stuff on the net about FM and have never come accross anyone needing to use a wheelchair all the time.
    Thanks again for the reply
    Regards Tina
    [This Message was Edited on 06/05/2004]
  3. WakeMeUp

    WakeMeUp New Member

    I'm ok walking around the house, but I cannot go anywhere else. I would like to get a wheelchair so I can get out more and see things. I would not be embarrased to use one because I just thank God that someone invented them for us to use to get around. So, wheelchairs are a blessing!!
  4. grapemnt

    grapemnt New Member

    Thank you for posting this. I have had fibro for three years and somedays I have had to use wheelchairs in the store and I feel foolish. I know people look at me like I am lazy. it makes me angry and not want to go anywhere even whan i am feeling only slighty bad "just in case" I have just ordered a walker with a seat to see if that works better for me, but just wanted to thank you for this posting. It feels good to hear from others who understand. Much love and understanding
  5. moocow

    moocow New Member

    Hi Tracey,
    I'm plesed you answered. I know the feeling that you get when people look at you, it really does not help that even on our worst day we look "normal" especially since (thankfully) our bodies have no deformatys, and most people only ever see you on a day when you are not feeling too bad. I use to be able to walk around with elbow cruthes but over the years have got much worse, but during that time there were many occations when (even during the same day) i would be walking then moments later would have to use my wheelchair,. I have even had people say to me "why are you using a wheelchair, you dont need it, I've seen you walking around!". Which really did not help me, especially when doctors and some friends are not sure if you are as bad as you really are. We have enough problems dealing with this disease, without having to deal with other people's scepisisim.
    Thanks again Tracey. I wish you well
  6. cookstove

    cookstove New Member

    Moocow, this is cookstove.

    8 years ago I could not stand or walk and had to give up my teaching career. I hoped that retiring would made an improvement in that condition.

    Instead it continued to get worse, and after three more years I could no longer walk for exercise, but could do water aerobics.

    Three years ago, my condition got much worse and I was also diagnosed with charcot' which is a form of arthritus where the bones develop hundreds of tiny stress fractures.

    So this past year has been a big reeducation for my husband and I. I started out with a manual wheelchair, but it is worthless outside in the country. I just received my power wheelchair a few months ago. I let Medicare buy the power wheelchair and I bought the manual one.

    I have also acquired a walker with a seat and basket. It is a very helpful tool in the kitchen. I can lock the hand brakes on it and sit on the seat and work at the counter preparing meals. Friends have given me plain walkers after their hip surgeries, and I keep one of them at each of my children's houses.

    We also acquired a commode-not for by the bed, but because it has the handles for balancing on one of our toilets. It sets over the toilet, you just leave the bucket part off like you would need if you used it for a commode. Then I bought a regular seat for the toilet that fits on the rim and raises it for convenience. We have been lucky to have a couple of those given to us by friends too, so now I can keep one of those at each of my children's houses for use when I am there.

    My doctor is encouraging me now to get a power lift chair. This is a trickier one for billing Medicare. Medicare wants you to buy it outright and then they will determine how much they will pay depending on your doctors description and prescription. They will pay a minimum of $250 for the lift mechanizm. Sometimes as high as $600-$900. We are getting ready to order that tomorrow.

    Who would have dreamed that someone so activie would end up this way so quickly. Thank goodness I have a wonderful husband to stand by me, encourage me and support me. Right on his heals are my wonderful children and parents, and many friends.

    My husbands favorite saying is that we just have to learn new ways to do the same old things.

    Take care--hope this helps. At least with these aids I do not worry about falling like I did with just my cane. When I am out in public and meet friends, they always want to give me a hug, and when I am standing with just my cane, I am almost paranoid for fear that I will fall.

  7. joyfully

    joyfully New Member

    Hi moocow. I've had RA for 55 1/2 years and FM for about 28 years now. I use an electric mobility scooter and love it.

    I can't tell you whick I use the scooter for---the two diseases are intertwined in this one body of mine.

    I love my scooter. I go anywhere and do anything on it. If you can walk a little, the best "lift" to get is by Bruno. Mine is called a "curbsider". It is idiot proof and has few moving parts. There aren't major overhauls to the vehicle for its installation. No cutting out the floor of the vehicle or ramps coming out the side of the vehicle.

    Personally, I'd go for the scooter over the wheelchair. If you have FM, who is going to push the wheelchair? If I had a wheelchair, I'd still be dependent upon someone else to push the darn thing. My FM and RA would go bonkers if I had to use my arms and shoulders like that.

    Also, I've noticed something else over the years. A wheelchair looks hospital-industrial. A scooter looks like a baby golf cart. People respond differently to the scooter. I don't know if this is important to you, but if it is---there is a difference in people's reactions between the two.

    Anyway, that is my observation. I've used scooters for 15 or 16 years now. When you go shopping at the grocery store, use their scooter. Yes, grocery store scooters are very cumbersome, but they don't tire us out like walking and standing in line. I can think so much better if I'm not having to concentrate on pain and balance.

    I also used to get frustrated if I was shopping, my joints and muscles hurt very badly, and I remembered something I forgot to buy that was waaaaaaaaaaaaaaaaay over on the other side of the store. I would go through this mental debate how badly I needed the item versus going home without it. That really drains your energy and spirits.

    So now I zoom around on my scooter in my home and outside of my home. It saves on what little energy reserves we have and makes us so much more pleasant to be around. I drive my scooter through the house and drag my laundry basket behind. How would you carry dirty laundry to the laundry room in a wheelchair? I'd have a trail of dropped pieces along the way. Maybe others have figured out how to function in a wheelchair, I couldn't. The foot rests were in the way to get to the countertops, My knuckles were a mess from trying to go through doorways. My body ached.

    Can you tell I like my scooter? I've got to zoom now. Bye. Joyfully
  8. cookstove

    cookstove New Member

    Moocow, the article from Joyfully is great.

    My power chair is not bulky and wheelchair like. I have a directional handle much like a joy stick on a game, and it fits between my pointer finger and thumb, do when I am stronger I can use my fingers, or when I am having a bad day I can use the whole hand by pushing my hand in either direction.

    I went with the power chair instead of the scooter for only one reason. I live in a manufactured home and the Pride power chair that I have, the passenger sits over the motor and it turns in very tight postions. I can ride it from room too room as well as out on my deck. My charcot' disease means that I need to keep as much weight bearing off of my feet as I can, but I do wear moon boots that allow me to walk awkwardly.

    Anyhow, the main use of your chair will determine if you need the power chair like I did, or the power scooter like Joyfully did.

    In my area you go to a seating clinic at the hospital and they help you decide on the model best for you as well as take care of the medicare paperwork. They were a great help to me.

    I went twice. Once for a beginning introduction. Then about 3 months later went back with the paper work that I had collected from my various doctors on the need for it. They measured me for fit, filed the paper work with medicare and we picked it up at Norco.

    I do like my manual one too--my doctor asked me to use it anytime that I feel like I can as he wants me to keep all the strength that I can in my upper body. I do agree with him for that. So I use it often when we go out in public where the streets and floors are smooth without carpet. That means less strain on your arms.

    I also always have my husband with me, as I am not able to drive anymore. I do not feel I am a safe enough driver with all of this going on.

    Take care and good luck to you on any of your choices.
  9. joyfully

    joyfully New Member

    I just thought of something else. There are special hinges that replace the existing hinges on your doors. They have several names, the name I remember the most is "swing away". I have a post on the arthritis board from awhile ago about them.

    They are GREAT! The specialized hinge is designed to literally give you an additional 1 1/2 inches of open space as it totally swings the door out of the usable door opening. I can't put it into words well how to describe how they work, but an additional 1 1/2 inches is ALOT if you are going through a door opening with a scooter, wheelchair, power chair, etc. If you need additional information. Just let me know. I'll get the other names that it is called. They come in polished brass, antique brass, and paintable. i get the paintable, they are slightly cheaper and blend in with after you paint them the color of your door trim.

    The important things to note before ordering them is whether your existing hinges have rounded corners or square corners on the plates that attach to the door jamb. The other thing that is important is the height of your EXISTING hinges. Are they 3 1/2 inch, 4 inch????

    That way you can take the old ones off and install the new ones without having to chisle out any wood to make the new ones fit. Joyfully
  10. cookstove

    cookstove New Member

    Thanks for that great news. Wouldn't you have thought that the seating clinic that I went to would have had that information? I will start checking into it.

    I could use them in this house and we are thinking of moving, so will be able to use them in the house we are looking at without remodeling all of the doorways as well as the walk in shower we will be needing.

    And I will have a raised toilet in the next house--I cannot wait to not have to deal with the seat on the toilet.

    Thanks again for the info.
  11. cookstove

    cookstove New Member


    I talked to my husband and he is fascinated with the door hinges you were talking about. He is actualy going around and trying to figure out just how they work and especially a door that is near the corner of a room.

    Also talked to my Norco representative today and she said she would look through her information and catalogues.

    When you find your article, would you please send me the information. I could use a set on the master bedroom door in this house and will definitely want to keep them in mind when we get to move.

    I appreciate it so much--this message board is wonderful--new ideas, shared ideas and finding out that I am not the only person in the world with all of these problems.

    Thanks again and take care.
  12. cookstove

    cookstove New Member

  13. joyfully

    joyfully New Member

    I'm so sorry. I've been very involved since my thyroid surgery. I'll get the information and get back to you. Again, sorry. I just noticed this request. Joyfully

    Edit-----Got it. The handicapped hinges are called by numerous names:
    Swing clear offset hinge
    offset door hinge
    swing clear hinges

    The best picture to show you a hinge installed is at adaptiveaccess. The door jamb is on the L. The door is on the R. The hinge wtaps around the front of the door trim so when the door is open the door literally is flush with the door jamb giving you additional inches to get through the door opening. I think on mine, I get almost an additional 1 5/8 or 1 3/4 inches. Doesn't sound like much until you navigate through with a wheelchair. What a difference!

    If you can't understand the picture, I can take a picture on one of my doors and replace the existing picture in my profile with the handicapped hinge picture. I can't remember what all was in my original post, so I may be repeating myself.

    I'd purchase PAINTABLE instead of the brass if your door trim is painted. It literally makes them "fade into the woodwork" so to speak.

    You need to measure how tall your EXISTING door hinges are. There is no sense in having to chisle out an additional 1/2 inch of wood and reposition the screws just because you ordered the incorrect size. They come in two heights (I believe). Also , look at the 2 corners of your existing hinge. If yours are rounded, then I'd order hinges with the same rounded corners to save you some tedious chiseling. The screw placement on the hinges are "standard" so as long as you order one that is the same height, you should only have to remove the old hinges and screw the new ones right into place.

    If the existing screw openings are too large, break off a piece of toothpick and insert it into each of the existing screw holes. When you drive in the new screw, it will be nice and tight.

    You don't have to order the heavy duty. They are really meant for metal oversized hospital doors. There are numerous sites on the internet that carry them. You will find a range of prices. Again, if you don't need brass, the hinges that are primed and that you paint yourself are less expensive. I just use a can of aerosol white paint on mine. My trim is white, so they just disappear.

    I love these hinges. It is soooooooo much easier than attempting to rip out and widen a door opening in an existing house. Joyfully[This Message was Edited on 10/16/2004]