Tools that REALLY work

    • Anonymous
      January 8, 2007 at 3:51 pm

      My fingers have not recovered completely and working with certain items with my hands is difficult. As many of us know our body just doesn’t work in the same manner as it used to. I have come across 3 tools that really work for me. One is a dough blender, a hand held tool which is used for blending shortening and flour. It has about 6 or 7 “blades”. It works so good to cut up boiled eggs for egg salad. My hand does not close sufficiantly to use a knife with much success and I have diminished strength in my fingers. One of my Christmas presents from family was a set of palm tools. One is a brush for cleaning vegetables and the other is a peeler for vegetables. They are called a Palmbrush and a Palmpeeler made by Chief’n although I’m sure there are other brands. I had given up on trying to peel cucumbers as I couldn’t manage a regular peeler or a knife. These palm tools have a ring that I push my finger into and the main part is then inside my palm where I have more strength.

      Hope this helps someone else. If anyone has any tools that they find work good I’d like to know about them.


    • Anonymous
      January 8, 2007 at 3:57 pm

      Hi Mari,

      I don’t have GBS – my brother does.

      It’s tips like these (yours) that I think are really helpful. My brother is still in the hospital, so we don’t yet know how much functionality he will regain, but it’s good to know about “tools” that might be helpful in the future.

      Best wishes…

    • Anonymous
      January 8, 2007 at 4:34 pm

      Thanks Jann. Best wishes and better health and a speedy recovery to your brother. It’s a long road back for some of us and we can use all the help we can get. I’m at 4 1/2 years from onset, using a power wheelchair and a walker and grateful as all get out for any improvement that comes along. I do what I can within my limits and am enjoying life anyway however I am able. Aside from the residuals of GBS I have very good health, not even a sniffle. I’m 66 years old so I’m not pining for a big social life and am okay with a trip out occasionally. I’m in a handicap apartment in a high rise building and there are many here much worse off than I am.

      Take care.


    • Anonymous
      January 9, 2007 at 3:46 pm

      Also handwriting is hard to do with a regular pen.
      When Nate was in the hospital someone found the biggest fattest pen I’ve ever seen.
      He could write his name after about 3 mos much easier than a regular pen.
      The fat tools are great for arthritic fingers also.

    • Anonymous
      January 9, 2007 at 10:40 pm

      Holding a pen was a long time coming. My handwriting is still terrible when I’m not relaxed.
      It seemed no one had time to help me brush my teeth in rehab. When I could finally close my hand far enough I got a hard sponge adaptor that slid onto my toothbrush. I could then hold the toothbrush with both hands but had to move my head to brush my teeth. I didn’t have the strength to pull on a Sock-ease device. I had to roll my short sock into a cup, throw it down on the floor, aim my toe into it, and then keep using the hook on my dressing stick on each side until I got the sock onto my foot. The hook tore holes in my socks. Whatever works I guess. You learn to be real inventive.


    • Anonymous
      January 10, 2007 at 12:00 am

      Nate had a hard time with a regular toothbrush too. I got him a battery operated one cause they’re fat and easier to hold onto. He could do that but it was really clutzy for awhile. He couldn’t get much brushed but at least he tried.
      Watching him try to use a fork though was painful. He didn’t even use one for awhile.
      He either picked up the food or someone fed him. His hands hurt so bad at first, until his doc upped his Neurontin enough to work. He would just sit with them face up so nothing touched them.
      When he finally was able to use a fork, he was really slow and had a real hard time aiming it at the food.
      I didn’t know what to do to help that problem so I just let him work at it til he got it.
      Sometimes us moms don’t know how far to help or not.

    • Anonymous
      January 10, 2007 at 12:14 am

      I had the same issue with my hands for almost 2 1/2 years, never thought I would get any improvement in them. My teeth were also badly neglected during that time, I remember my daughter bought me an electric toothbrush, but I could not even turn it on. I have paid dearly for that neglect. I did learn some things in rehab & on my own. I keep all of my button shirts buttoned, just pull them over my head. I also keep my bra done up & pull that over my head as well. I used to use a buttoner to help me, although I can do buttons now.
      I cut my fingernails & toenails now with a toenail clipper, but not using just the two fingers (they are not strong enough.) Instead I grip them with my palms & squeeze, it took until last spring for me to do that. I use one of those rubber sheets to open bottles or jars. I use a fatter pen to write with & make sure my elbow is resting on the table. I use a razor-edged letter opener to open my mail. We buy half gallons of milk instead of whole gallons. I went to Autopay for most of my bills, or pay them on-line. There are so many little changes I have had to make, but now I can’t even remember doing things the old way.

    • Anonymous
      January 10, 2007 at 1:59 am

      This is the most amazing thread about [B]courage[/B]. It reminds me of where I was and some things, of where I still am. You have all brought tears to my eyes as I picture your struggles and your [B]courage[/B]. I am really proud to be a part of this big, amazing and wonderful family.
      God bless you ~ every one ๐Ÿ™‚

    • Anonymous
      January 10, 2007 at 12:23 pm

      Oh, the bra! I started out with the sport bra but was so glad when I could wear a regular one again even though I have to fasten it and then turn it around to get it on. At first I didn’t have the strength to pull it around.

      I cannot reach to wash my back so my neice (what would we do without family and friends?) made me a back washer out of two terrycloth washcloths. She sewed two sides together, folded them the long way and stitched down the long side, turned it inside out, closed the ends with wide bias material and added a long looped handle to each end. Similar to those you can buy but cheaper and machine washable. Works great.

      For nearly 2 years I complained that my braces were uncomfortable as I couldn’t get a long sock on. My legs would sweat and stick to the braces. It wasn’t until I went in to have the braces adjusted that I found out they have tube knitted material to use for this. (I would think someone along the way could have told me about this.) Goes right on with the Sock-ease. I bought the whole roll for $15 and can cut off a new pair when I need them.

      I still have trouble reaching my toes to trim my nails. I, too, learned to use that clipper different. I turned it around, holding it upright with the cutter down, so I had more leverage with the palm of my hand.

      Until I came on this web site I was not aware that I must rest a lot. After spending a year mostly in bed I fought having to go to bed. I just couldn’t make myself stay there any length of time and fatigue was hitting me like a brick wall. So I got into reading true crime books, the kind I couldn’t put down. I bid on used books on Ebay, etc. Even with the postage its cheaper than buying new and bothering family to shop for them, and they come right in the mail. (I do read other kinds of books, also.) I go to Barnes and Noble web site and see what the book is about and read the reviews to decide first if I want the book. and find out what others have read and suggest. Don’t know what I’m going to do with all these books now though! I’d donate them but don’t know of any place that would take them. My apartment is starting to look like a library.

    • Anonymous
      January 10, 2007 at 7:17 pm

      Hi Mari

      What to do with all the books once you have read them? Sell them again on E-bay, if you can manage the post and packing end of things. Or give them to your local library.

      As to bras – well, they are the most awkward garment. I realise that I am fortunate because being small I can get away without wearing one. Though now I do wear one when going out to work – if only to make my clothes hang better. I don’t honestly think bras are particularly good healthwise.

      I know that I am fortunate and my comments are not meant to be flippant. I do realise that you may not be physically able to sell on E-bay but I only suggest it because you might be. And if you are, you do get a buzz when something sells.

      God bless

    • Anonymous
      January 10, 2007 at 10:27 pm

      Hi Teresa Anne
      No offense taken. I’ve never really investigated how to sell on Ebay. I don’t do well if I feel it’s complicated. Not sure I can handle that or the postage and mailing part. Just being obligated to do something goes hand in hand with my procrastination I acquired since I got GBS. I think I will check with the library as some of my books are like new. Someone told me the Salvation Army will not take books. I’ve practically got a crime library going here. I’m not so much into the gory kind, I just like to see how the detectives crack the cases. I love looking at stuff on Ebay, it’s like going to garage sales every day without having to leave the house. I can imagine the thrill of making a sale. Some day maybe.

      Take care.

    • Anonymous
      January 10, 2007 at 11:09 pm

      ah yes, the dreaded bra. unfortunately i’ve got some biiiiiiiiiiiiiiig hooters, so i really needed the bra or my woo woo’s would have a southern exposure. comes with age i guess. i found the front hook bras worked better. or as i called them the front loaders.
      i too needed the crest spinbrush to hold onto because in addition to having a problem holding on to a skinny toothbrush, my gums, tongue and throat are numb/asleep, so the battery toothbrush was a big help.
      also, i love to cook, so the mandolin or any kind of automatic chopper or slicer helps to save fingers in the kitchen.
      and last but not least i only wear shoes that have no ties. i can’t tie my shoes anymore, so slip ons are the way to go. i also have a tool to button things for me. fine motor skills are a thing of the past for me, but i’ve adapted very well, using my handicapped tools. they work great.
      hope i didn’t offend anyone with my hooters comment, but i’ve heard worse descriptions.
      good luck with our helpful hints.

    • Anonymous
      January 11, 2007 at 1:03 pm

      The sport bras I had were front fastening but I didn’t have the strength to pull the front together so had to crawl into them. I couldn’t go without (40B became a 40 Long!!!!. ๐Ÿ™ ) I remember my first attempt at getting dressed and I couldn’t even lift the edge of my tee shirt.

      One of my residuals is a sort of hot flash where I suddenly feel like 50 mosquitoes are attacking my back. One tool I can’t do without is a wooden back scratcher which helps relieve this biting feeling. Is also handy to slide the handle under my thigh where I’ll get an itch often that I cannot reach. Since the last joint in my fingers don’t curl normally it is difficult to scratch. A back scratcher would be a welcome gift. I consider it a personal care item but have had many ask to borrow it. I think I guarded that item more than anything else I had, and it was well marked with my name in permanent ink. By the way, those sticker address labels are great to mark your items while hospitalized; kleenes, toothpaste, books, etc. For some reason my rehab didn’t have many pillows. My daughter bought me some and used a permanent marker to put my name on them in big letters across the pillows., which could be read through the case. I still had to remind the aides to put them back on my bed. and not my roommate’s.

      Another problem I ran into was finding I may be sharing my bedpan with my roommates. None were marked and were thrown together on the bathroom floor. It took 3 trips to the DON to get that problem corrected. She understood my concern and had all bedpans labled with name and bed number. Although I could verify mine my roommate was not able to do so, so it was still a problem. I finally got permission to keep mine in my bedside drawer. Reason: Soon after this my roommate was discovered to have MRSA a contagious staff infection that I only was aware of due to my nursing aide background.

      I wear the hard plastic AFOs that wrap around my legs. Finding slacks with a leg opening large enough at the bottom to accomodate the wider top of the AFO is a real challenge. Hoping some day I can switch to the AFO with just the one piece up the back of the leg.

      I was not at ideal weight when I got GBS, nor did I lose a lot of weight during my hospital stay. After so long a time of inactivity I now have a lot of loose skin like a sharpei. But I figure if anyone wants to complain they can be grateful they haven’t had GBS. I have a doctor appt. next week and am hoping I don’t have a problem with getting up on the exam table. I’d never seen any in the doctor office that could be lowered (nor even thought about it before I got sick) and when I asked they acted like no one had ever brought it up before. Surely I can’t be the only one with this problem. Getting up on that little step and turning around is out of the question for me. My visits before were in my chair but this time I’m to have a Pap test.


    • Anonymous
      January 11, 2007 at 9:04 pm

      Dear Debs

      Sure why would anyone be offended about hooters? All females have them – to a greater or lesser extent. Anyone that is offended is in denial.

      Mari, it definitely sounds like you are about to improve your doctor’s understanding and experience with regard to females, GBS and Pap tests. Personally, I can only say – go for it! The doctors learn from their clients and yours is about to learn. I have read before about people having problems with gettng up on he exam table and it is past time that doctors became aware of it.

      With regard to the bedpan – you sooo did the right thing. Believe in yourself – because doing so helps you and others.

      By the way Mari, I compleely understand about selling on E-bay. I’ve done it and it can get confusing, to say the least. But I wouldn’t mind betting that sooner or later you will do it.

      God bless

    • Anonymous
      January 11, 2007 at 11:47 pm

      AHHHHHHHHHHH, those “hooters”. I still haven’t solved my problem. Sports bra’s I’ve tried, they don’t work. My arms just can’t reach up or down to pull it down in the back. Same problem with a back hook, even though I can shift it around and hook it in the front, then shift it around to the back, I can’t pull it up or down so it ends up around my shoulder blades. I don’t have to twist a front hook around, but it’s the same for the third time, I can’t pull it down in the back. I’m a very modest woman, I hate cleavage to show and I don’t like my big hooters to hang all the way south, but I had to become a liberated woman. Luckly, I live in sweatshirts and prefer loose non-transparent tee’s. I haven’t given up on finding just the right bra.

      BACK SCRATCHERS, I can’t hold the wooden ones and reach down my back, so this works great for me. I use an old tee shirt and cut it in a wide strip, then I tie a double knot on both ends and rub it up and down my back like you do when drying off with towel.

    • Anonymous
      January 12, 2007 at 10:37 am

      Mari ~ you mentioned “obligation and procrastination”. I have always wondered what happened during the active disease process?? There has got to be some physiology thingy that happens with the thinking. I find that it goes along with the foggy brain. Before GBS I was “the getter done Kid” ~ now I can have an idea/plan and 5 minutes later I’ve totally forgotten. Yes, I’ve tried writing post-it-note reminders but I don’t remember where they are! I try to have one place for them [I]but[/I] I often don’t remember that I have a place. [U]Or[/U] I’ll look there and literally not see it. Having been a perfectionist in my former life has completely unravelled in this life ๐Ÿ˜ฎ

      One of my biggest frustrations is knowing that I have change in the bottom of my hand bag and can’t find it! One time on returning home I dumped everything out on the table and lo & behold there was over $4.00 in changed and I couldn’t feel a thing!!!! Yup, I suppose that’s pretty simple compared to the “bra issue” :p

      I have always propossed that doctors and other medical persons should experience each disease, for 1 week, so that they develope a compassionate understanding but, I wouldn’t wish this disease on anyone!

      ๐Ÿ˜€ 3 cheers for the continuing courage we all share in common ๐Ÿ˜€

    • Anonymous
      January 12, 2007 at 11:09 am

      Oh I was like a kid at Christmas when Rehab started to give me tools to help me be independent. My first, they gave me a [B]sippy cup[/B], with DOUBLE handles!! When I was strong enough to control it and get it to my lips I thought I was SO COOL! The end of dribbling water down my chin after each sip to take a pill arrived! Signaling the Nurse to tip the cup back and getting splashed in the face was GONE! I had went to a different level and had a big brag! I no longer had to ask for a sip of water, I could hold my own cup and drink when I wanted. OK so they still had to fill it but they were good about that and happy for me and how excited I was to be independent.

      The most personal and liberating tool was the one that holds your toilet paper for you! That brought back my privacy that you loose when you are in a hospital. Also saved my caregivers at home from that duty.

      To recieve my own [B]walker[/B] was great! They gave me the [B]pocket[/B] to attach to the front so I could put personal items in there too! I received a [B]long handle sponge[/B] for in the shower. They also gave me my own [B]cane[/B] later on before I come home.

      But the best stuff was the things that helped put on my socks and the [B]metal long handled shoe horn[/B]. The tool that saved my caregivers lots of time was the spring loaded thing that was like fingers to pick things up that I dropped.

      I did not know most of this stuff was available. They gave me a catalog with all the available things that would make my life easier. I went thru that and seen things that turned out to be some of the best inventions. Spoon, fork and knife with huge easy grip handles. Tooth brush with the same handle. Some had a loop for the thumb to help with the grip too. I also had a long handle with two different kinds of hooks at the end….they helped with getting dressed or picking up things or holding clothes as I got in them like my slacks.

      After I got home then I received a [B]porta potty[/B] that made a good chair for in the bedroom as I got dressed too. More stable than the edge of the bed. The [B]transfer chair[/B] with a back that helped me get in and out of the tub and I could use it in the shower.

      Kudos to the people that invented all these things for people that need independence with living.

      I am sure you have other needs just mention them and one of us has had a tool to help aid us in that problem.

      Have a GREAT Day!

    • Anonymous
      January 12, 2007 at 5:19 pm

      Liz: I wonder whose idea it was to put the bra closure in the back! I can’t stand a “living” bra that likes to climb either. I do have more strength in my thumbs so I have to gouge into the sides and wiggle to bring it back down. I wonder if the so-called sleeping bras work any better for daytime. Who the heck wants to wear a bra to bed?!!

      Judi: I, too, have short term memory at times. Sometimes so short I forget why I was doing something while I’m doing it. I get all excited about going some place and as the time nears I feel like I really don’t want to do that afterall. At times I think I may have Post Tramatic Stress Syndrome from the abuse I got whiile in rehab. I also think some of these people should get a dose of temporary paralysis so they know what we are dealing with.

      Kit: I have and have had many of the tools you mention. The long handled sponge didn’t work for me. I recently saw an ad for a narrow long cloth with loop handles for dragging between the toes. Will have to make one of those.

      I have trouble holding food down with a fork in my left hand and trying to cut it with a knife in my right hand. I have to hold it in an awkward way and sometimes think I might accidently catapult the fork across the room.

      I just received a clipping that was in my hometown newspaper (Eagle River, WI) telling of a 25 year old young fellow who was hospitalized Nov. 19 and diagnosed with GBS. Just a week later he was also diagnosed with Cancer and is undergoing radiation. Anyone know if I’m allowed to put his name and the nursing home he is in on this site so he might receive cards? I do not know him personally but I will be sending him a card and letter. There was a local benefit held for him and that is why it was in the newspaper.


    • Anonymous
      January 12, 2007 at 10:34 pm

      Mari I would wait and contact his parents about getting permission to make that post here. It would be traveling around the world and due to the privacy act and idenity theft I would not do it until them. The newspaper also had to get permission.

      It is amazing how many tools are out there to help people. Depending on their needs there are variations too!

      Get out a childs coloring box and crayons and use that. It works great for coordinating the eyes and the muscles and the messages over the nerves inbetween. Depending on the amount of damage that might be an area that needs to heal better too! Keep up the great work!

    • Anonymous
      January 12, 2007 at 11:19 pm

      Thanks Kit. I was concerned about that privacy thing myself. I really feel for the young man. I don’t know to what degree his GBS has affected him but having another illness on top of it is just so unfair.

      I will try the coloring book. I had gotten into painting (trying anyway) with water colors and also was getting fairly good at sketching. I now have a tremor in my good hand so that has really discouraged my little hobby. But my handwriting has improved, readable now anyway, so maybe some day I’ll have enough control to resume where I left off. Grandma Moses would have nothing to worry about but its fun to see what I can do with a little color.