Brother newly diagnosed – still in hospital

hi jann & welcome,

probably. take care. be well.

gene gbs 8-99
in numbers there is strength

[QUOTE=Jerimy][COLOR=Blue]aan.com/professionals/practice/pdfs/gbs_guide_aan_mem.pdf
[/COLOR][COLOR=Blue][COLOR=Black](cut and paste in browser)[/COLOR][/COLOR]

[COLOR=Blue]
qjmed.oxfordjournals.org/cgi/content/full/95/11/717 [COLOR=Black]
(cut and paste in browser)

[/COLOR][/COLOR]This second link has some really good information and also links to other articles/papers that may help you prove your need. I didn’t have time to read through all of them but I hope something in there will be of help to you.

Jerimy[/QUOTE]

You can find some information at these links. Also the GBS Foundation has some excellent material about GBS. You get the information mailed [snail mail] when you regester.

Hi Jan, this website [B]madgc.org[/B] (cut and paste the link into a broswer) when it’s up (website is down atm) is a great resource. It’s the Multiple Autoimmune Disease Genetics Consortium, lots of great information on there. I have several Autoimmune Diseases as you can see from my signature here. The links in the post above are great too. If there is anything I can help with feel free to email me anytime.

Jerimy

Janz,
You are looking for sense in a disorder that is a “syndrome” which means that doctors are not sure how to prove what it is….no germ that they can label as causing it. I am still trying to make sense why I got it TWICE…20 years apart. Mine was from stress….no flu shots, no flu, etc.
There is a book by Joseph Heller called NO LAUGHING MATTER who wrote about his experience with GBS.
I am in my third month of waiting for my body to regenerate the myelin sheath. RIght now I still cannot walk and do not have a family to be there for me. I think that makes a BIG difference. I also wonder if it won’t scar me emotionally. Many of my friends dropped out of site when they knew I was alone at home. I wonder what the lesson is that I am to learn from this.
Your brother is lucky to have a brother like you. Mine hasn’t helped one bit. Just keep what you are doing and be there for him.

jann,

be sure the rehab place knows that gbsers can NOT be over exercised. it may help the muscles, but plays havoc with the nerves. the balance is all pt/ot must be recovered from in 12 to 18 hours or it is too much & will hurt/slo his recovery [or do much worse – this is a serious item not to be taken lightly]. take care. be well.

gene gbs 8-99
in numbers there is strength

jann,

yes. good ques #2. i guess yes until he can tell the sessions as a whole are not draining him. even during pt/ot if he should feel major fatigue coming on the pt/ot should stop. take care. be well.

gene gbs 8-99
in numbers there is strength

Jann,
I think you might be right about cortisol. I am currently reading a book on that and will let you know. I have had a passion for reseaching health issues. I have also had some incorrect diagnoses from doctors which lead me to do this. I had gotten shingles when I got home from backpacking through 10 countries ALONE in Europe. The dermatologist called it “FLEAS” and gave me a prescription for flea powder! I paid 60 bucks for that diagnosis!! My cousin diagnosed it over the phone. I took vitamin C and they were gone in 2 days. I just read an article that said the Third leading cause of death in the US is medical mistakes. So, I am one who questions how much some doctors really know. That is why I chose to take my many supplements in getting over this GBS. I like how the doctors said we don’t get this twice. Wish they would have told my body that! But I think 20 years between is a long time. I do not think that most GBS patients need to worry about getting it again. The stress that I was under most definitely brought it on a second time and a lot worse. I took care of my mother for almost six years and taught at the same time. Then she died so that year was a mess with PTSD. Then I moved. I had enought points for three breakdowns! Gee, that might have been preferable to GBS!! Jann, I have no resentment about the lack of help being offered by my brother and my so-called friends. I am more amazed. I have read that alot of MS patients have anger that brings it on. I know 2 people with MS and both have unresolved anger. MS is like GBS only stretched out over many years. My first GBS occurred when a close friend had MS. We learned that each of us needed to sleep with our feet sticking out of the covers or they would get numb. Anyone else find this?

Hi Carolyn ~ you stated that “MS is like GBS only stretched out over many years”. Would you please reference the resource from which this is quoted? We are (the GBS family) always looking for credible sources for our files. Thanks much!

My understanding is that MS is like GBS except that it affects the CNS versus the Peripheral Nervous System in GBS/CIDP. MS has several subtypes just like GBS does, such as Relapse/Remitting, Chronic Progressive etc. The primary difference being the area affected, beyond that there are many similarities.

Jann, best wishes to your brother.

Do you know the background of the therapists and doctors treating him? Mine were familiar with neurological injuries — mainly because stroke patients deal with a similar kind of recovery. (My experience says it’s not necessary for therapists to work exclusively with GBS patients.) My intensive rehab consisted of 3hrs/day for six days, much of it centered around real life: learning how to bathe and shave with hands that barely functioned, and limbs that were severely weakened. Occasionally, while in hospital, my therapists did push me. I’m glad they did: I never felt the disease got the better of me.

I moved back to my two story house a week after getting out of hospital. (I had friends move a bed onto the main floor since I live alone.) A week later I was walking unassisted, awkwardly — but like a real person. Three weeks out of the hospital I requested a handicapped placard so that I could resume driving and not worry people around me with running my errands.

Skilled and knowledgable therapists are truly motivating. There were some people around me who wanted to see me as an invalid and do everything for me. I’m glad I didn’t let them have their way.

Just as everyone here has a unique experience with GBS, your brother’s experience will be unique. Would he need a ramp built? Well, it depends on [I]his[/I] recovery doesn’t it?

Truth to tell, nothing is going to speed up the regeneration of myelin: not his therapists, not his doctors, not any medication.

My therapists started out teaching me how to swing my weight around with what muscles I had so that I could get out of bed. Seems silly now, but “nose over toes” should’ve earned someone a Nobel prize. I used it again when I was having difficulty with stairs. Worked like a charm.

I remember being totally exhausted when I arrived in rehab Saturday at noon. They didn’t evaluate me until Monday morning. After just a week in the ICU, I’d forgotten that people take weekends off. It was strangely comforting to know that I was getting back to normal life so soon.

Jann,

Here is a site with some handsfree type headsets, maybe something on there would work [B][SIZE=1]headsets.com (cut and paste into a browser)

[/SIZE][/B]

Judi Z,
Unfortunately, the relationship that I saw between MS and GBS was not a study but a close friend who had MS at the same time I had GBS. That was the first time I got GBS 20 years ago and she has since died. But another friend with MS kept hers away with the Gershon died and lived much longer.

Janz,
I seem to be allergic to fish oil/Omegas. I took them years ago and they built up in my system since they are not water soluable. I had a migraine equivalent which means no pain but it hit my vision center instead of my pain center of the brain and for a split second I saw a hot dog suspended on the ceiling. Not kidding. Try and explain that to a doctor! Luckily my wholistic doctor diagnosed it perfectly. I also got ice cream headaches for the first time in my life. So, as a teacher, I ask students who have problems concentrating, if they get ice cream headaches. MOst of them do.This tells me that their learning disabilities might be that they are hyperallergic. Once the fish oil was out of my system, the ice cream headaches went away.
I let my body tell me what is wrong and what it needs. I found that when my eyes were sensitive to light and dry, I needed B2. There are lots of other simple ways to give the body what it needs but too many to type here. Glad that you are interested.

[QUOTE=janz]Thank you ‘olav’ for such a kind and thoughtful reply.

However, unfortunately (?) he hasn’t had any therapy since being transferred to this rehab facility on Friday — seems the therapists don’t work weekends or holidays??? !!! Is this typical? My sister-in-law just told me this and I’m at a loss for words. ???? I understand the need to go slow, but isn’t time of essence too?

Jann[/QUOTE]

As you may have already learned, there is a whole routine when entering a rehab hospital. You must meet with several people, be evaluated as to the specific therapy you will receive, and to what extent you will receive it. A care plan has to be developed and then followed.

Weekends are usually laid back at rehab. Saturdays usually consist of ‘half day’ sessions. Sundays, just like God, are your day to rest for the following week. Later in recovery Sundays are also used for home visit days.

Rehab can be demanding, disheartening, and fullfilling depending on which day of the week you ask the patient. I hated Mondays and lived for Sundays.

REST can never be stressed enough. I would nap between therapy sessions ever day and hit the bed right after dinner.

I wish your brother the best.

Angela

Janz,

If your brother still needs something so he can use the telephone without holding it in his hand, I have a headset that he is welcome to have.

It consists of a unit that plugs into the telephone (where the handset usually plugs in), and an earphone that hooks over the ear with a tiny microphone attached. It looks like the kind of headset you often see receptionists use.

I used it when I wanted to talk on the phone, and have my hands free to do other things. I no longer use it, but if you think it would help your brother , I’d be glad to send it to him.

If he doesn’t need it, and if anyone else on the forums think it would help them, please PM me and give me your name and address. I’ll gladly send it.

A company called Hello sells them. It’s made by Plantronics.

Best wishes,

Suzanne