I would greatly appreciate any insights [personal or medical] re Guillan Barre. Mr Kiffa is in clinic waiting for a possible medivac in a couple of hours. possible diagnosis is GB. I’ve been online. I’ve listened to a bunch of docs [I’m in public health and have dealt with these guys all my working life]. I know that the mortality rate is lower than SARS. I want to know about family support, what the person goes thru, recovery and how long does it take. Mr Kiffa is in excellent physical shape [he’s a real exercise junkie, doesn’t smoke/drink and eats much healthier than I].
Any insights to share? What can I do to be supportive. I might not be able to accompany him to South Africa but I’ll get to him sooner than later. Your help is greatly appreciated.
I work as a psychologist in a physical rehabilitation hospital that gets a fair number of GB patients. Patients differ, but your husband being in good shape before this is very good. I have seen patients who were so weak that they were on a ventilator for a time, but then recover totally. Your husband will take weeks to even months to recover fully, so you will both have to be very patient. The tricky part is to build stamina, which means when he starts to recover, he needs to push himself, but not so much that he is exhausted. Our physical therapists and occupational therapists teach lots of pacing and adaptive strategies that conserve energy.
On the emotional side, I haven’t seen many GB patients who become clinically depressed. Most are frustrated and sad, but true clinical depression is fairly rare unless there is a history. Watch out for the classic symptoms, though: Thoughts of death, giving up, no interest in other people or usual activities (obviously many usual stuff is out, but we look at interest, not participation), apathy. If these go on for an extended period (defined as three weeks or more), he might be becoming depressed and you will need to talk to him and his MD about this. In any case, though, family support, having someone to talk to, and having things to do to relieve boredom go a long way. Being an exercise junkie might go either way–he might be really sad/frustrated by his weakness or he might see this as a challenge to be overcome. If he can see it as a challenge (try to encourage him along those lines), he will be fine. Challenges are stimulating. I had success once with a patient by making a chart for him so that he could see his progress and also see his goal graphically. One huge part of this is to not compare to how he was pre-GB, but how he was at his worst, so he can see his progress.
Best of luck to both of you. GB is very frightening, but like I said, I have seen lots of people recover fully. I hope you can be with him soon.
I’ve never suffered from GBS but I have been medevaced from within 1000 meters of the river Congo to South Africa because of a temporary partial paralysis and can make some comments that may still be relevant 20 years later. The medical care I received was excellent but strictly no frills. I was in a non-motorized bed in a small private room with a black and white TV with 1 channel. There was no stream of dieticians, therapists, social workers, phlebotomists, etc. coming and going so it was peaceful. But it was also boring. The nurses came by when they had to, a physical therapist visited daily, and I think the chaplain visited once during the month I was there. The food was bland and monotonous. I lost a lot of weight. My spouse couldn’t come with me when I was evacuated but came a few days later, rented a room in someone’s house (something of a boarding house) and spent nearly every day with me reading Michener’s The Covenant to me. My spouse did take one break, at my insistence, to visit Kruger Park. All in all, I’d say that it’s really tedious to be paralyzed and that Pretoria/Jo’burg is an exceptionally boring place. But as long as you can look forward to full recovery you should both do just fine.
I just spoke with my sister kiffa who is now in Pretoria. mr kiffa is in the intensive care unit, going through what the doctor told my sister is “the descent.” He is getting weaker and they expect this to go on for about a week. But, they also expect that he will recover from this. This is an excellent hospital (The Unitas) and apparently has had a lot of experience with this as they tell kiffa what will happen next, and it does. I have emailed your responses to her and she says thank you very much for your information. She says your experience, Yeah, sounds eerily familiar.
I also want to thank you. It’s frightening to read about demyelinating peripheral nerves and months-long recovery, especially being so far away. But mr kiffa is a strong, amazing man. I’m hoping his excellent health will result in a short recovery. (He’s been through long convalescences before. He was run over by a cement truck when he was 13. He’s a tough one.)
Many thanks for the information re GB. mr Kiffa has been transferred to Riverfield Lodge [nice words for a rehab center]. I had to return back home to check on the kids.
Brynda: Many thanks for your information. The Lodge works on the FIM method developed by SUNY [New York]. Its a team effort with the client being the center of action in developing goals etc.
Yeah: 1000 meters from the Congo River? What a coincidence!
You would be amazed at the changes in Pretoria and Jo’berg; cable tv, cellphones all over, Jo’berg reminds me of Southern Calif. The housing program is a real success altho limited. Health is another issue [I’m in public health and have only dreamed of working in S Africa with real lab slides rather than shards of glass].
I have nothing to add about the Guillain-Barre but, I would love to recommend a good book. The author Joseph Heller had Guillain-Barre and he and his friend Speed Vogel wrote *No Laughing Matter[/], which chronicles his illness and recovery. It’s an excellent (and humorous) book that may give you some insight into what you and your husband can expect.