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Guillain-Barre Syndrome

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The decision to leave the hospital and go home is one that should be carefully considered, especially for those who are going to need lots of assistance with daily living.  When you leave the hospital you will loose the prepared meals, the cleaning services, and the nursing staff.  I will share with you my experience of going home from the hospital and hopefully you can learn from my experiences.

When I left the rehab unit of the Minneapolis, MN Veterans Hospital I was unable to cook for myself, get dressed, get to the toilet, or get myself to any of my appointments or daily therapy.  While I was very excited to be home and out of that hospital I realize now that I was putting quite the strain on my parents.

I was also dependant on my wheel chair to get around and didn't find out that the bathroom door wasn't wide enough to get through while in my wheel chair until I was at home and tried to make it to the bathroom.  We ended up wheeling the chair right up to the door and placing a walker inside the bathroom door.  Once there some one had to help me out of the chair and into an upright position with the walker supporting my weight.  Then I was able to navigate to my shower chair or the raised toilet seat.

Turning around and sitting (plopping) down on the shower chair was easy enough, as was getting onto the raised the toilet seat.  The only problem I really had was with the raised toilet seat.  It was not open in the front and made clean up difficult because I didn't have the strength to raise up off the seat.  If you are going to get a toilet seat I would encourage you to look for one that was open in the front or one that allowed for easy clean up.

I was fortunate that my parents house had a bathroom and bedroom down stairs I could use.  They also had hardwood floors which made my wheeling myself around much easier.  As I was still building strength in my arms pushing my chair around on carpet would VERY quickly wear me out.

My Physical and Occupational Therapy had to be conducted every day still and because we lived in a small town we had to make about an hours drive to get there.  I was unable to drive so I had to depend on someone to get me to my many appointments.  By the time we made the drive there, had two hours of therapy, then made the drive back home there wasn't much left of the day to take care of other things with.  It was quite the burden on my parents.

 

Bathing

Bathing proved to be a major undertaking and we experienced a few hurdles that we weren't prepared for but were able to over come.  The first problem we ran into was the door wasn't wide enough to allow the wheel chair through. (Bathroom doors, I am told, are often narrower in older homes.)  Because I still couldn't walk without an assistive device we placed my walker inside the door and my parents would help me stand and get to my walker to wheel the rest of the way to the bath tub.  Then all I had to do was plop down onto the shower chair that extended outside of the tub and slide over under the running water.

I really wanted to soak in a hot tub, but I just didn't have the strength in my arms to push my body weight up and out of the tub.  I spoke with an Occupational Therapist and she suggested we buy a small plastic foot stool in the toy department and place it inside the tub.  She felt that I might be able to go from the edge of the tub to the stool, then from the stool to the bottom of the tub.  She was right, not having to move my body weight so far was much easier and I was finally able to soak in a tub of water!  We bought my step stool at Wal-Mart for less than $10.

When I first arrived home I didn't have enough function in my hands to hold a bar of soap, making it impossible to bathe myself.  My mother found a wash mitt with a Velcro closure that, when tightened, held the mitt on my hand.  On the outside of the mitt was a little pocket that a bar of soap slid into and was held in place.  They can be bought, but I am sure they would also be any easy thing to make for anyone with any skill on a sewing machine or some good old fashioned determination.  That mitt was another item that helped me to regain a little independence.

Sleeping

My sleep at night was never sound, I often awoke to pain and was unable to get back to sleep.  I had pain in my feet, mostly.  Neuropathy pain was a big part of the problem, but I also experienced pain from my foot drop.  There are boots you can buy to wear at night that I bought.  These boots (actually they look more like an AFO than a boot) helped prevent the foot drop pain I was experiencing.  For the Neuropathy pain I spoke with my Dr.  She OK'ed me to take some extra Neurontin at bedtime, which ended up helping me to make it through the night sleeping soundly.  On therapy days where I worked hard and had a good stretch I also took some Motrin before bedtime.

Because of the sensitivity in my feet I experienced a lot of pain if I got into bed with my sheets tucked in at the foot of the bed, I couldn't sleep! Un-tucking the sheets from the bed and and pulling the covers back from right over my feet eased the pain and allowed me to fall asleep.

I was recently told by another GBS'er that he had hot and swollen feet when he went home that would be a cherry red.  Until he was able to stand touching his feet to put a wet washcloth on them to help cool them down he used a spritzer bottle to spray them.

Beds that are low to the ground (and chairs, too!!) can be a challenge to get up and out of. I did not have to difficulty with my bed, but I would imagine placing big blocks or something else similar under each place where the bed touches the floor would help with that problem.  There are chairs on the market that push you upwards to aid in getting you to a standing position, I am unsure of the cost, though.

A woman told me that she had purchased a baby monitor to leave in her daughter room after she returned home from the hospital so that her and her husband  would know if their daughter needed any thing during the night.  I thought that was a great idea, there were a few nights I could have used that!

 

Wheel Chairs     

Wheel chairs must be fitted to the individual who will be using the chair, they don't come in a one size fits all variety.  For a website on wheel chair standards. visit the University of Pittsburg via their website.  Another good site for good info on wheel chairs is WheelchairNet, check it out.  The Helen Hayes Hospital has a Rehab Department with lots of good information on mobility and assistive technology.  To better arm yourself with knowledge, read from the article provided at Paraplegia News For a list of wheel chair resources, visit the Life on Wheels Center.  For those who are looking to keep an active life style, to include sports such as basketball and even skiing, check out the Paralyzed Veterans of America's website, Sports N'Spokes.

Comfort in my chair was one of the biggest problems at first.  After finding an air cushion for my chair, the amount of time I could spend sitting in it.  A few other problems I faced were getting into and out of the house, and just getting around inside the home.  The sidewalk leading to the house had cracked and an uneven sidewalk, which made the going difficult.  Once I got inside the house I found that there weren't many things that were accessible to me from the chair, and I was often running into stuff with my wheels.  With a little help we were able to make the items I needed frequently accessible from my chair, and to rearrange furniture to allow me to get around inside the house with the least amount of "uh-oh's".

Getting into the house with a wheel chair will require the use of a wheel chair ramp.  Here are the Gov't directions for building a ramp to their standards.  They can be viewed at ADA Accessibility Guidelines.

Vitamins

Vitamin B-Complex (normally has all DRA of B vitamins)
Vitamin *B-12 Methylcobalamin type - lozenges
Vitamin C
Vitamin E
Lecithin
Omega-3 Fatty Acids Salmon, Tuna - dark green and leafy vegetables - flax seed oil - fish oils

*B-6 toxicity: Side effects are usually tingling and numbness.

*B-12 is especially beneficial for neurological patients and nerve maintenance. B-12 is hard to digest and Methylcobalamin is recommended because it goes directly into the blood circulation.  Cyanocobalamin type must be digested, broken down by the digestive system before entering the blood circulation...as much as 30% or more could be lost in the stool.

 

vitamins list submitted by Jethro
May 28, 2003

Feet

Throughout my ordeal, my feet have been by far the largest source of pain for me.  I have learned a few things along the way that have helped to make my qualify of life much easier; I will share those things with you here.

The old socks of mine that used to fit comfortably were too tight and hurt my feet after  GBS.  My feet hadn't gotten any larger, just the socks fitting snuggly over my foot caused me pain.  Going to a larger sock worked, unfortunately for me I have a size 13 foot so finding larger socks for me was a challenge.  If you do have a foot the same size as me or larger type "men's big and tall" into your favorite web browser and you will find several stores that offer products for you.

Depending on what I have planned for the day is often the deciding factor in what socks I will wear.  (keep in mind that I have to wear AFO's)  If I am going to be staying in the house or doing limited amounts of walking I wear ankle socks.  They are easy for my weak fingers to get on and off.  If my day is going to consist of lots of time on my feet and walking I wear a pair of socks I got from Cabela'sŪ called Ultimax that  goes well beyond the top of my AFO's and prevents it from rubbing against my skin.  There is enough sock left above my AFO that I can fold it down and cover up the biggest part of it that rests against the back of my calf.

For those of you who do wear AFO's and have a custom set made for you, I am sure you have had the same experience where the metal grommet rubs against your skin causing all kinds of havoc.  I picked up a package of padding from Wal-Mart that helps tremendously.  The stuff is called MoleFoamŪ Padding by Dr Scholl'sŪ, but there are numerous companies out there that make similar products often referred to as mole skin.  Type "mole skin" into your favorite web browser to learn more about this great product!  There are thick pieces and thin ones, I like the thin stuff for covering spots that rub and the thick if you need to "fill" in an area that doesn't fit exactly right.

Getting your feet and AFO's into a pair of shoes can often be a very frustrating challenge, if not nearly impossible.  I found it easier to get my feet and AFO's into a pair of shoes after buying a pair one full size larger that what I normally wear.  Now that the summer months are upon me, I have found that a pair of sandals that Velcro in two places  (I bought mine at Wal-Mart for $7) are the most comfortable and easiest and  to wear with my AFO's.  I can honestly see myself wearing sandals this winter after investing in a pair of water proof socks for those days I have to tromp in the snow!  Once again, I found it necessary to buy a size bigger than normal to accommodate my AFO's and keep my toes from hanging off the end of the sandal.

Other Suggestions and Safety Inputs

I have had several ideas suggested to me by others on some different ideas on how to make the return trip home easier and safer.  I am going to try and list them here; thanks to everyone for all the great ideas!

  • try moving a wheel chair through the house before going home with someone in it to see what needs to be moved.  A passenger takes up more room than an empty chair.

  • plan to accommodate the home for your CURRENT condition.  when you improve you can remove what you no longer require.

  • visit your local fire and police departments and see if they have a program where they can record the nature of the disability of those residing in the house so they are aware of the assistance needed incase of an emergency.  I was told some fire departments provide handicapped stickers to place on the windows of the residence so anyone responding to an emergency is aware assistance will be needed!  Big safety issue I never considered, a big thanks to Dawn and her husband for pointing it out!

  • attach a bag to wheel chairs/walkers that can be reached from the ground incase of a fall that includes a telephone.  The bag can hold other frequently used items.

  • If you don't want to sign a contract for a cell phone for service, any cell phone will work if you dial 9-1-1 in case of an emergency. Ask around and see if a friend or relative has an old phone. You pay for the service every month on your phone bill.  Another alternative is to get a prepaid phone such as those at Wal-mart or Radio shack.

  • use Styrofoam or plastic cups instead of glass for those who have weak grip strength.  I used an insulated cup with a handle on it like you can buy in any gas station that sells fountain drinks.

  • arrange items in cabinets, closets, shelves and other places to make items frequently used more easily accessible.

  • replace doors with hanging curtains

 

Grocery Delivery


Recently someone pointed out another little something that might be of great help to those who have difficulty getting around... grocery delivery!  Several big stores now offer grocery delivery directly to your home.  Here are some that people have shared with me.

Schwan's have that big yellow truck you see in your neighborhood, their website is www.schwans.com

In Manhattan I am told that www.freshdirect.com has great products, especially their veggies.

Albertson's is available in your area and down the west coast. Online shopping with pickup ($4.95) or delivery ($9.95).

Peapod is available in the Chicago area and parts of the northeast from D.C. to Mass.

Netgrocer will deliver nationwide but it is limited to primarily non-perishables.


In Canada folks can try GroceryGateway.

 

 

 

This page was last modified: July 16, 2005