Eager to learn specifics on GBS

Tina,

Thanks so much for sharing with me. I went to the local bookstore here and i was just dumbfounded by the lack of books on GBS. Everything they had was in the reference section and those sources contradicted each other tremendously. Basically what I am gathering from the few willing to talk to me is that Aquatic therapy is the BEST! (what exactly about it) I mean are you walking in the shallow end? the deep end? Are you swimming? How many times as far as repetitions and weekly?Ok so basic ROM? and stretching. Hmm im wondering if you sitting in a wheelchair trying to simulate feeding yourself was to get a certain nerve C6 to get a tenodesis grip to function(that is the hand to whip back thats why the utensils strapped to your hand came into play.the volleyball with the hand was probably to get you to move and reach?Concentrating on pushing against a therapist’s hands is contract relax probably one of THE BEST forms of resistance exercise. Speech therapy so you had the valgus nerve affected or was it just the facial nerve VII or X? I just want to do my part and make more people aware as it seems that my town Asheville NC isnt very knowledgeable. I thought they had a support group but im having trouble finding one here..

Thanks Tina. for your help! Hopefully we can keep in contact i strongly believe I can make a difference in educating those in my profession way beyond my presentation.
Maria T.[QUOTE=Tina]Hi Maria,
It’s wonderful that you are trying to compile as much information as possible regarding the PT/OT/Speech therapy that is required for GBS patients. Often times, people “assume” that GBS patients can “jump” into intense therapy and that this will help with recovery. That’s not so!! I used to be so tired after therapy, I cried and would be a bit discouraged as I couldn’t perform simple exerices that usually required no thought, pre-GBS. I believe the best therapy would be where the therapist works on range of motion and stretching as these initial movements are probably all that a GBS patient can handle. As the days go on, other exercises can be added. I would sit in my wheelchair with eating utensils strapped to my hand to try to simulate feeding myself. Once this was accomplished with very litte “mess”, we moved on to playing volleyball with a balloon. As far as the strengthening for the legs, we basically did a lot of resistance exerices where I would concentrate on trying to push against the therapist hands. Also, aquatic therapy was the best!! It’s amazing how much confidence you can gain by walking across the pool holding the sides of a parallel bar. It’s a wonderful experience. I had aquatic therapy at least 3 times a week. I attended speech therapy, both group and individual. It was embarrasing (to say the least) when the whole group had to attempt exerices by making loud, impolite sounds, however, it worked. The right side of my face drooped, so it was hard for me to pronouce words. Also, my voice was very low (although I didn’t have a trach) so it was hard for anyone to hear me speech. I attended speech therapy at least 3X per week and also practiced on my own. As you can see, I love to talk (lol). I know I’m a bit long winded, but I really hope you can glean info from this site. Good luck and remember; it’s the little things in life that really count.

Tina
GBS 1991[/QUOTE]

Hi Jeff,

thank you SO MUCH for the good book references. so you do walking in the water is that shallow or the deeper end? (i know silly question but I wanted to know as far as resistance goes) Are you using a vest or water gloves? What sort of upper body exercises are you doing? Wheelchairs is a good way to get around if ya need to just make sure as you know..to provide yourself with pressure relief for sores..UGH those can be the worst and probably one of the main reasons I see alot of people in the hospital.Im very interested way beyond my presentation allows I get 20 min. for it…and I strongly think as soon as my mouth opens it will be in HYPER mode just to get as much info out as I can.

Thanks Jeff!

I too am trying to inform my profession and people around me…[QUOTE=jeff]Hi Maria: There are a number of books by patients recounting their experiences, such as Learning to Walk Again but the best all over book is Guillain-Barre Dyndrome by Drs. Parry and Steinberg and should be available on Amazon. The only real exercise I can get now is water walking which I like very much. My legs are too weak for swimming, but I can walk for 20-25 minutes and I feel really good. I lift 5 lb weights for upper body and getting around in a wheelchair is good arobics as well.:rolleyes: I am glad you are interested in this disease as the more who know about it the better. Good luck. Jeff[/QUOTE]

Thank you so much for sharing with me. I am trying to do the best research and be well informed before I go sharing any sort of information. The books I have encountered are contradicting and Im trying to just take them and compile as much info as i can. Thank you for sharing your therapy with me. What did you mean by smashing a blue ball? Was this with your arms hands what exactly?

I might have some more questions if thats ok? I am headed over to our medical reference library to find some more research. I am bound and determined to help as much as i can. If not only that I like to educate those around me. This is something I think my profession needs to know about if we dare to make a difference.

Thanks alot everyone for sharing with me. Presentation is Sept. 11th and I hope i get all the important info out in 20 minutes. (yikes)

Maria T.~bxrgrl27[QUOTE=angel2ndclass22699]Hi Maria, I did aqua therapy earlier this year. I have relapsing/remitting type. Pt/ot started for me the 2nd day I was in the hospital, just having the therapists move my limbs. That was the best thing that they could do, everyday 2x am and pm. I was up with help by the 7th day, and ever since my first paralysis event all my events have turned out close to the same time frame-mostly because I had my family work my limbs while I was paralyzed-no other pt/ot was perscribed, not by my choice. With aqua therapy walking was done with no resistance at all. In my situation, my core is weak, among other parts, just walking in water was more then enough resistance to accomplish measureable results. Sitting and doing arm curls, again with no resistance, was beneficial, and a few other exercises, all but one was done with no resistance. the only tool i used was a small blue ball, while sitting i had to push the ball down, and had to control its raise to the surface-harder then it sounds for someone with a weak core and arm muscles. A GBS/CIDP patient isn’t working towards more muscle, just muscle use, nothing more. Less is best, pain means over worked, not gain. If a patient is overworked in the recovery early stages, it could result in a relapse, which isn’t pleasant at all. Walking in water should be in minimum of hip deep water, anything deeper or shallower would change the outcome. Deep water can used if the patient is supported by noodles, and is wearing a lifevest. Remember the arms cannot support the body for long, that is work and a constant strain at that. I think the water jets that I had in my therapy, worked wonders to help relax and rest my muscles after my therapy session, they were on for 5 to 11 mins after every session. I was fatigued, but I feel I recovered alittle quicker with the use of jets vs just in and out after the therapy. At the end of my time in aqua therapy, my pt added the nustep to the beginning of my session, this was very tiring and I didn’t do well afterwards, relapsed. I only did my therapy 2 days a week, more then that and I couldn’t do my daily living. I think the pts need to do their homework into the daily lives of their patients and then work around their schedules to best suit the patient. I taught several pt/ots in my area, because so far I was their only GBS/CIDP patient. They All graduated from my school with honors:D Good Luck and Keep Up The Good Work!:)[/QUOTE]

Whats messed up about the books that everyone is telling me about is that Barnes and Nobles and Booksamillion will not order the books without a committment to buy them. GRRR…now I know since i am doing research that those of you with GBS are truly frustrated as the literature out there is VERY limited. I am joining in on the frustration and I am trying to learn as much as i can so i can make a difference…theres only so much a college student can do..but im trying so anyone willing to share and chat back and forth with me…I appreciate it SO MUCH.

thanks so much to everyone for the warm welcome.

Maria T.[QUOTE=oneluckygirl9106]Hi Maria! Nice to see someone doing some reading! The book by Dr. Parry, as mentioned before, is the best you can read. And if you’re curious about something, just come to the forums, and I bet you’ll get the answers you need. Welcome!:D[/QUOTE]

LOL about the faces you made. Gotcha I know exactly what kind of ball you are talking about. so you are in shallow water? Water resistance and bouyancy are a mean competitor to deal with..regardless of being weak or strong. There are things that I thought I was strong in..and when tested..I scored poorly. So have no fear…the good news is..you can work and improve it! thanks again..for takin the time to answer my questions…research is frustrating me simply because the books are VERY limited and without ordering them and committing to buy one…theres no option of using them.BLAH to the bookstores.

thanks again.

Maria T.[QUOTE=angel2ndclass22699]Maria, The ball is one that pt use-looks like the playground type, its the small blue one. While sitting in the water, the water line comes up to my shoulders, grab the ball with both hands, elbows at sides right against the body, push the ball down in the water slowly, until it hits the thighs and let it come back up under control-not rocketing out of the pool:D it works the core, hand, wrist, arms and shoulders. when I first started aqua therapy, every movement and ripple in the water felt like a tidal wave to me, my core strength was nil, I actually had to hold on for dear life when the jets were turned on:eek: 😀 Good Luck with your research.[/QUOTE]

Kit,

Thank you so much for the tips on exercising a person living with GBS. I wish it was as easy as finding a book that outlined PT for GBS patients.. with any patient I deal with I try to make the therapy session both a functional one, and most important a fun one. You gain more when you like what youre doing. Functional and fun is what I thrive on. I will keep in mind the diaphragm as yes so many have poor core muscles and breathing muscles. I will be doing some more research and hopefully the medical library at my work will have something concrete that I can use in my presentation.

thanks Kit.

Maria T.[QUOTE=LadyKITUSA]Maria T. ~ bxrgrl27 First this illness effects everyone different, so make sure you work the GBS patient carefully and don’t get ahead of their needs. They have to listen to their bodies and you have to listen to them. With all the variants your program has to be able to accommodate someone that is completely paralized to someone that only is effected from the waist down. I think most of us started out with movements done in our beds, until they could evaluate the needs of that patient. Tempature of the water is very important since most of us are not able to take real hot water like a hot tub (104 degrees) or a regular aerobics pool that might be kept at (84 degrees) for those that are really working cardio. A cardio workout would send the GBS patient back to bed for days. I was worked in a rehab pool that went from 2.5 or three feet to 5 feet deep. Depending on the patients height and use of arms to maintain balance. Most rehab pools have a lift or crane if the steps are not an option. Just waves and those nasty jets can knock a unsteady or weak GBS person into deeper water. There should also be a seat around the pool for resting or working leg exercises. All flotation devices come in handy at one time or another as needed. Noodles are great for stretching and balance. Agua weights are too much for most of the beginners that need are weak they come in 5lb, 10lb, and 15lbs. At first anything that provides resistance should be added carefully. Those muscles, tendons and ligaments are very easy to injure with just light twisting caused by the water. Ankle weights are not necessary, just move to shallower water. Swimming with full arm movement is usuallly way down the road. Kicking behind a surf board or kick board works too many muscles at once and will wear out your GBS person quickly. Avoid those kinds of things at all cost. The muscles don’t need strenght as much as they need movement. Work on range of motion and balance. Breathing is another thing to consider. Some have had lungs colapse or have had pneumonia and need to build up lung capacity, but more important the diaphram is a muscle and probably needs strenghtened too. Some of the things I did in bed and while sitting in a chair can be done in the pool. As well as some of the other movements that strenghten the legs, back and abs. Walking forward, backward and side to side is alot easier in the water holding on to the wall of the pool with your shoulders covered. To increase the challenge then try to do the same exercises with the person is shallower water. Gravity then starts to add a real challenge. If a lift is not available, under work the patient because they will feel good and want to experience freedom and weightlessness, NOT realizing that they have to fight gravity getting out. That will be the hardest exercise of the day, so save extra energy for that. Knee bends and other exercises can be done in the pool by just using the different levels of water. Remember that every movement is being challenged by the resistance of the water! Writing your alphabet with your toes under water and playing the piano with your hands under the water can help also and make sure you use some things that are different and fun. Keep your routine interesting and doing things to music that is slow and relaxing like Tai Chi or Yoga can also be of benifit. Extending the leg to the front and next to the back will help work the hips and make sure you tell them to watch their posture to avoid injury. Lifting the leg out to the side and back or on an angle will help with strenght for walking. A balanced routine that works upper body one day and lower body the next or a combo each day but use different exercises make it interesting. Watching for fatigue is so important. Make sure you stop before they are tired, don’t push and remind them not to push their limit they will gain more that way. Exhausting is their worst enemy. Depending on the patience ability it might be easier for them to straddle the noodle and get in the deeper water and peddle with their feet and legs like you would on a bike. OK so I have not posted for a few days and I like to talk too. I think that is one of the side effects of the GBS person. Keeping things possitive and allowing them to use humor to laugh at themselves will take some of the stress away! Remember GBS also means [B]G[/B]etting [B]B[/B]etter [B]S[/B]lowly! Hope this helps you see the differences between the illnesses and their needs. They differ so greatly from what a stroke victim or car accident patient needs.[/QUOTE]