Reply To: ANYONE EXPERIENCING GBS (patient or caregiver)

@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.