ANYONE EXPERIENCING GBS (patient or caregiver)

Where are you located?

A few years ago, this organization published a pamphlet for therapists to help them understand the disorder. You should start by getting a copy of that. I’ll see if I can find a reference for it, but the headquarters might know what it is anyway.

Here it is:

https://www.gbs-cidp.org/wp-content/uploads/2012/01/PTOTGuidelines.pdf

Before submitting answers, let me just make one observation. GBS and CIDP can cause great disability, but recovery is possible and progressive over a period of years. So an important parameter is the length of time since becoming afflicted, or since being discharged from hospital. For your questions pertaining to limitations, then, I would answer nearly all of them “yes” or “no” depending on when they were asked. The survey does not account for this aspect.

I had a milder case that was believed to be the Miller Fisher Variant of GBS. I agree that the length of time since becoming afflicted is very important. There was a bottom point (nadir) for me and it was just under 4 weeks but I think that is because my case was milder. More severe cases may be much shorter than that. I would be glad to help if you need it.

1. At my lowest point, I was almost completely confined to the couch since my bedroom was upstairs. I had to have someone hold onto me while I walked to the bathroom. I had so much numbness in my legs that I don’t even know how I could move them. I also had double vision which made it difficult to see clearly. It would take me half a day to rest up for someone to help pull me up the stairs to my shower and I could barely stand upright. If I was able to get shampoo in my hair, I had to take a break and rest on the bed for about 10 minutes (water running the whole time) before I could make it back to rinse the shampoo out. I could not brush, dry or fix my hair. I just pulled on something easy (running shorts & t-shirt) because my hands were not working well. It was a while before I could put on makeup or even cared to (much bigger concerns). I had difficulty eating because I had trouble even sitting up to eat.
2. My neighbor loaned me her mother’s cane but I really needed a walker because both legs were affected. I ended up not using it because I just kept fighting to walk with other’s help in my house. I didn’t get out. Just trips to the ER and other Dr and PT appointments.
3. I had trouble chewing and swallowing. My jaws would get so tired. I started drinking Boost because I couldn’t chew and lost more than 15 pounds.
4. I was out of commission. My kids had to help me.
5. I could not drive because of the double vision and I could barely walk. When I finally could drive again it was so hard to keep the clutch in and my hands would get tired holding the wheel.
6. I didn’t plan anything. In too much pain.
7. I didn’t shop for months.
8. I did find a way to wash laundry eventually but I didn’t fold anything.
9. I am lucky I had a spouse taking care of all of that. (Took 2 years to pay off my bills but done!)
10. I never slept. Completely sleep deprived. So many nerves firing and so much numbness and pain.
11. Laid around all day long except for couple of laps I tried to make around the dining room table and shower then I was done for the day. So exhausted and in pain.
12. Employed.
13. Had to go out on FMLA leave because of double vision and inability to stand.
14. Could not type on computer or see to do job. Eventually had awesome PT and able to work again.
15. Never had devices. But did use a yoga ball and walked in a pool to strengthen my core again and putty to regain my finger strength.
16. I didn’t participate in anything for months. Could not even see the tv clearly.
17. I do notice that my endurance is lower but I am lucky to be able to run and work out again. Races take a toll now and I can do a 5k at a slower pace (I ran marathons before). My grip strength has never been the same since.
18. I had great friend and family support. Terrible medical support at the time. But great doctors eventually.
19. I lost my speech at my lowest point and only my closest friends and family were around for that. I was so closed off except I found this site and it was the help I needed so desperately.
20. I dropped off from social media at that time because I felt I was fighting for my life and I didn’t know what was happening to me. I thought I was going to die. I had my family with me, my mom stayed nights and days with me, and a couple of close friends called and visited. I fought through the blurred vision to find this site and got to meet others with similar problems as me. It was the greatest! I still keep up because no one should be alone with this.

I hope this helps. I had a milder case but it didn’t seem so mild to me at the time. I am over 2 & 1/2 years out and am basically recovered. I am glad that you are getting awareness out there on GBS. I was lucky to get therapy early on and I think it made a huge difference in my recovery. Good luck to you in your studies and career!

@tallison I think it’s also important to remind those in your program that textbook knowledge =/= real first-hand experience with the disorder. I’ve had people say that recovering from it and walking again is not a miracle because it’s the natural progression of the disorder and that we are not considered survivors because it’s not a serious disorder in which death occurs. I’d like for those people to walk a day in our shoes because I think they’d think otherwise if they had to go through the hell we went through and back. Some people are afflicted to a greater extent than others. I had days where it didn’t look so promising because I was a short-term quadriplegic that went down to 90 lbs. and kept getting infections. Yes, most people don’t die and yes, most people walk again, but most people also experience residual side effects for the rest of their lives and some people have to rely on assistive devices for the rest of their lives as well. Some of these responses have come from people in PT and OT school, so that’s a pretty scary mindset to have coming from someone who is supposed to have more empathy and compassion than such negative responses. That was off on a tangent, but I think it’s a really important message to relay. 🙂

1. Does individual have difficulty or require assistance performing self-care tasks? If so, how? (personal hygiene, bathing, toileting, dressing, feeding)
The initial onset occurred at the end of January 2016 and I lost the ability to walk a couple of weeks later so I had to start using a diaper and needed help with bathing. By February 26, I became paralyzed from the neck down, so I required full assistance for performing all self-care tasks you mentioned.

2. Does individual require the use of adaptive equipment for functional mobility/transfer? If so, what kind? (cane, walker, wheelchair, scooter)
In the beginning, I used a walker for a couple of weeks before my legs became too weak. When I became paralyzed from the neck down, they would use a hoyer lift to transfer or a sliding board. I had a power wheelchair for a short period of time in April 2016 that I could control with my head. I now walk without much assistance, but for longer distances, I do bring a wheelchair with me as I fatigue easily.

3. Does individual have difficulty or require assistance feeding self? If so, how? Is feeding tube required? (utilizing utensils, chewing, swallowing)
Towards the end of February 2016, I had to rely on others to help feed me since I had no use of my hands, with no food restrictions. In the beginning of March 2016, it started affecting my respiratory system and I was eventually trached on March 10, after being on a ventilator for a week prior to that. I also had a feeding tube at this point.

4. Does individual have difficulty maintaining prior role function at home, work, school, and within the community? If so, how? (parenting, spouse, child, sibling, boss, co-worker, coach, choir member, teacher, student, secretary, etc.)
I was in hospitals and lower level of care facilities for 11 months, so my social life was completely put on hold. I couldn’t work and I still can’t work now due to fatigue.

5. Does individual have difficulty managing medication/health care independently? If so, how? (distributes own medication, schedules doctor appointments, drives self to doctor, etc.)
I was completely dependent on others to help me out until June/July 2016. When I regained mobility in my hands and the trach was removed, it became easier to handle everything myself. Now that I am back home, I can do everything on my own.

6. Does individual have difficulty planning or preparing meals? If so, how?
No.

7. Does individual have difficulty shopping independently? If so, how? (grocery store, gas, clothing, supplies, etc.)
No.

8. Does individual have difficulty maintaining housework, laundry, yardwork? If so, how?
No.

9. Does individual have difficulty managing finances independently? If so, how? (writing checks, balancing checking account, paying bills by check/online)
No, not now. When I was still in the care of facilities, my family would help me with paying for bills that were due.

10. Does individual have difficulty falling asleep and/or remaining asleep throughout the night due to symptoms? If so, why? (pain, sensations, etc.)
GBS causes insomnia due to the tingling sensation and numbness. Paralysis makes it hard to get comfortable. Also, when I was ventilated, it was very noisy, so that was another issue.

11. Does individual have difficulty or notice an increased demand to rest due to symptoms? (nodding off, napping, relaxing, short of breath, etc.)
Not when I was paralyzed. When I started using my arms again and could use a wheelchair to get around, my arm strength was weak, so I could only wheel myself around for short distances. When I was learning how to walk again in December 2016, there was shortness of breath and I could only walk a few steps before getting tired.

12. Is individual currently employed, retired, or attending school?
None.

13. If formerly employed, did the condition/symptoms require a surrender of position, early retirement, or leave of absence from work/school?
I stopped working one day before being admitted to the hospital, which had nothing to do with my sympmtoms.

14. If currently employed/attending school, does the individual have difficulty fulfilling job/student requirements? If yes, how?
N/A

15. Does the individual require assistive devices or modifications to complete tasks or activities at work, school, home, or within the community? (Assistive devices include a reacher, dressing stick, button hook, sock aide, toilet seat riser, etc.) (Modifications include grippers for knobs, grab bars, ramp, handrail, hand held shower head, etc.)
I still use a wheelchair if I know I’m going somewhere that would require a lot of walking, like Disneyland.

16. Does individual continue to participate in leisure activities? If so, what kind?
In December 2016, I was able to start going out to eat, to the movies, etc. for 4 hours at a time. That’s how long the facility allows you to leave for.

17. Has the individual noticed a decline in their ability or endurance during leisure participation? Yes, endurance is definitely affected. It gets better with time though.

18. Does the individual feel they have a strong personal support system? (family, friends, co-workers, church members, etc.)
Yes, I am very lucky to have very supportive family and friends who have helped me every step of the way and continue to now.

19. Does the individual participate in activities requiring social interaction? If so, what kind? (family/friend gatherings, church social, support group, etc.)
Yes. I attended holiday events even when I was at a subacute facility during the holidays. I also went out for my birthday. I think I make more of an effort now to go out with family and friends.

20. Does the individual attempt to maintain social relationships/contacts? If so, how? (phone call, text, email, in-person, social media, etc.)
During the time I was away from home, I would have many visitors. I also kept in contact with people through text and social media with the help of others. Video calls were made once I was further along during my recovery.

See GH above. Answers vary widely depending on length of time… Since you are a student, I’ll answer with what a student might need to know, including motivation for patients still in OT, if I can keep that organized in my brain.
1. Hospital/Nursing Facility wouldn’t allow me to go home until I could transfer myself from wheelchair to toilet/bed and brush my teeth. Back home, caretaker Mom wasn’t any more comfortable with the idea of bathing me than I was. She stayed in the next room with bathroom door open so we could communicate without yelling. No one has helped with toenail clipping…and it is still difficult and painful for me to do myself 5 years after onset. The orthotics I had to wear made that worse because my feet slid enough in them, but my toes were numb and I couldn’t feel my toes getting smashed until the pain arrived all-of-a-sudden. I couldn’t brush my hair for a couple of months. I didn’t bother with clothes that needed buttons. Forget zipping up my winter coat- even on the days it was snowing or -15 degrees outside. Home Health person tried to teach me to hold an electric toothbrush. I’m pretty sure she had to reapply her makeup…
2. Started out back at home confined to the wheelchair unless I transferred. Canes and walkers were useless to me due to previous disability. Spent about 2 months slowly and painfully walking and using wheelchair when exhausted. PT wasn’t happy about that, but it wasn’t her legs/back. Now I don’t use anything, although I kinda miss the chair when I’m over-tired/the electric scooter at the grocery when I need to save energy for later in the day.
3. Utensils were interesting until I got my aim back.
4. I had quit my job not long after initial symptoms started. It was very physical, and the increasing tripping (foot drop) made people think I was “on something”. I miss the $ and parts of the job. Thank goodness I had a decent savings built up. I could do most of the job, but I would need to rest/do sit-down work more, and I have no love lost for the company or my co-workers. I really need to change careers-not sure about what else I can do w/out more education.
5. At first I had to rely on Mom to drive me around, help get meds ready.
6. Also had a meal service, but that was gross. Then I got meals-on-wheels. Better, but I really didn’t like some of the foods (finicky), and others bothered my increasing food intolerances/allergies.
7. N/A
8. I get overwhelmed with some chores. Standing to do dishes doesn’t last long. Mopping is aggravating. I gained so much weight from meds that I had to buy new clothes. (Used wouldn’t work because of skin issues-missing tags with materials…) So laundry makes me sad. And annoyed trying to find room for everything. I’ve donated some clothes, but not my old favorites.
9. My savings are long gone. I appreciate the help I’ve gotten, but it isn’t enough to even think about moving out on my own plus doing all of the chores/cooking.
10. I’ve always had insomnia. Now I fall asleep easier due to exhaustion. Laying down too long hurts my back. Having to lay down extra (when I have a cold) sucks. (Sorry!)
11. The weight gain is hard on my self image. I’m strong for surviving GBS so well, but I look like I’m lazy.
12. I want a job, but completely having to change careers is hard to keep in mind, not knowing what else I can do as well as I’d like to. And can do. The stress is too time-consuming.
13.
14. I want to go to school, but 1. $ 2. This exhaustion makes my ADD worse.
15. I still have a shower chair and grab bar. Standing is too risky.
I have a reacher that I forget to use, larger knob on a favorite lamp, and I installed an extra handrail on
most frequently used stairs.
16. Not much to do out here in the boonies. Don’t have enough extra $ or energy to go very far for very long. I
read a lot, but that makes me drowsy. I want to exercise more.
17. Endurance is way down. Crowds, especially rowdy kids, make me uncomfortable. They always did, but now I worry about being knocked down.
18. No support system except GBS group.
19. I want to do stuff, but $ concerns and being kinda shy make it hard.
20. I’ve been trying to do so, but it is more work to maintain, explain…and I get tired so early, even with naps.

Speaking of naps, I’m going night-night now.