My very good friend has been in the hospital with Miller Fisher Syndrome/GBS since the beginning of September, only a few days after delivering her first baby and moving into a new house. After almost four months, she finally opened her eyes, then a few weeks later, she is now able to speak, But the rest of her progress has been agonizingly slow -- no movement of her limbs, a little ability to sit up, but that's it. Her husband visits every day with their baby boy -- but they are both getting pretty discouraged by the very slow recovery progress. I asked if she'd like some books on tape but she apparently spends much of the day in physical therapy -- and is just too exhausted to focus on books on tape.
I am desperately trying to figure out how to help, how to bolster their spirits, what to do to keep them going. She is being treated at Spaulding Rehab in Cambridge, MA and the hospital has been wonderful. She has many visitors, her mother has moved up from North Carolina and sleeps in the room most nights, then the baby and husband arrive to relieve her mother.
Any suggestions as to how to boost their morale? This is a woman who did three triathlons in 2013 before her pregnancy. So this is all so horribly discouraging for her. I believe they all thought she'd recover more quickly because she was in such good shape to begin with -- but that has not turned out to be the case.
Unfortunately, that's just not working right now -- they know they have to keep trying -- she knows she has to remain positive -- but she's really struggling with depression right now -- I was looking for creative ways to bolster her spirits.
bring personal items from home,perfume helps,music,cloths.i am still struggling with depression.stay strong.good luck.
AMA said:
Unfortunately, that's just not working right now -- they know they have to keep trying -- she knows she has to remain positive -- but she's really struggling with depression right now -- I was looking for creative ways to bolster her spirits.
Thank you Rick21 -- will try that -- but since she still can't use her arms, music might be tough -- I'm seeing her later today -- will definitely ask her.
rick21 said:
bring personal items from home,perfume helps,music,cloths.i am still struggling with depression.stay strong.good luck.
AMA said:
Unfortunately, that's just not working right now -- they know they have to keep trying -- she knows she has to remain positive -- but she's really struggling with depression right now -- I was looking for creative ways to bolster her spirits.
Thank you Rick21 -- will try that -- but since she still can't use her arms, music might be tough -- I'm seeing her later today -- will definitely ask her.
rick21 said:
bring personal items from home,perfume helps,music,cloths.i am still struggling with depression.stay strong.good luck.
perfume triggers the brain. AMA said:
Unfortunately, that's just not working right now -- they know they have to keep trying -- she knows she has to remain positive -- but she's really struggling with depression right now -- I was looking for creative ways to bolster her spirits.
In 2011 I also had Miller Fisher variant of Guillain Barre I was completely paralyzed and spent 12months in icu 6 months on a ventilator then breathing as now with a trachy in place due to paralized vocal cords.I spend another 12months in a general ward
Now almost 4 yrs later I have full movement of my arms and legs although I have foot drop and no control over moving my ankles up or down.I was discharged from hospital in an electric wheelchair to a nursing home.At first I could not feed myself but now I can .This year I am planning on buying a second step gait harness walking system from oregon America as you dont need to be able to fully stand to use it.This will enable me to strengthen my legs to enable me to at first stand and then walk.I am also waiting on surgery to my vocal cords so I can have my trachy removed.It has been a hard road but I never have given up.Recovery in my first 6-8 months was painfully slow I was 48 yrs old when GBS struck .It can be a long road and my journey to recovery is still continuing,it is excruciatingly difficult emotionally but hang in there 90% of people make a full recovery.I was very severely affected by GBS and not expected to live-but I have survived and fully intend to continue my journey everyone's recovery is different and it can take up to 7yrs but stay strong persistent determination with small stepped goals has helped me remain positive.
WOW -- what a long road you have traveled -- I am so afraid that my friend faces the same long road -- hopefully not. I didn't get to see her this week -- she wasn't up for visits -- but I intend to continue visiting and encouraging as best I can. Was there anything that worked to lift your spirits as you went through it all?
LJ said:
In 2011 I also had Miller Fisher variant of Guillain Barre I was completely paralyzed and spent 12months in icu 6 months on a ventilator then breathing as now with a trachy in place due to paralized vocal cords.I spend another 12months in a general ward
Now almost 4 yrs later I have full movement of my arms and legs although I have foot drop and no control over moving my ankles up or down.I was discharged from hospital in an electric wheelchair to a nursing home.At first I could not feed myself but now I can .This year I am planning on buying a second step gait harness walking system from oregon America as you dont need to be able to fully stand to use it.This will enable me to strengthen my legs to enable me to at first stand and then walk.I am also waiting on surgery to my vocal cords so I can have my trachy removed.It has been a hard road but I never have given up.Recovery in my first 6-8 months was painfully slow I was 48 yrs old when GBS struck .It can be a long road and my journey to recovery is still continuing,it is excruciatingly difficult emotionally but hang in there 90% of people make a full recovery.I was very severely affected by GBS and not expected to live-but I have survived and fully intend to continue my journey everyone's recovery is different and it can take up to 7yrs but stay strong persistent determination with small stepped goals has helped me remain positive.
I enjoyed looking at photos of happier times and thinking of all the things I could do then and how I would never take them for granted, reminiscing over pictures allows you escape your bodily restrictions for a while traveling back in time in your mind.In your mind you are still the same person but temporarily trapped in an uncooperative body.Looking at old pictures of happier times inspired me to fight on and continue working on therapy.Music also allowed me to escape my body mentally.Talk to her also about how she is feeling I found that people were not really prepared to talk about my feelings how I was so angry about this happening to me.If I had been able to talk it over it would have released a lot of frustrations and tears.Also consider some mental relaxation tapes to imagine yourself in more pleasant surroundings
There is a general acceptance that is needed that you generally can't make it go faster. It is not her fault, she did not do anything wrong. It is just something rare that happened to her and us. In many ways I wished I had done something stupid like slipped and broke my leg, because I would have something to blame for what I went through.
I hope she continues on the path of recovery and that we hear of her clapping her hands in joy and holding her baby soon.
I had Miller Fischer too, though not as severe. It will be a year in April and I’m almost completely back to where I was pre-GBS. This video may give her some hope. http://m.youtube.com/watch?v=VwQzjj9aQnQ
This is the same video about a GBS survivor that got sick after having her baby… Very inspiring. (the other link doesn’t seem to be working). http://vimeo.com/63976901
You are such an amazing friend! I thought I was going to die when this first hit me and had a couple of friends by my side through it all. It really made a huge difference in my recovery. Hope she feels better soon!
I was taken from the stroke ward to the ICU after they figured out what was ailing me. My brother showed up with the hospital priest for last rights. I didn't think I was really in trouble until that moment.
Tarhealing said:
Hi AMA!
You are such an amazing friend! I thought I was going to die when this first hit me and had a couple of friends by my side through it all. It really made a huge difference in my recovery. Hope she feels better soon!
You sound like a great friend!! I just got out of the hospital a month ago (with a much less severe case of GBS), so it’s very fresh in my mind!
The best advice I can give you is to keep visiting as much as possible…and some days, DONT even acknowledge that she’s in the hospital!! One visit that I specifically remember, was when 2 work friends brought a pizza and we talked about sports for a few hours! I don’t even think they asked how I was feeling, which was nice bc I was sick of talking about it!!
Obviously, you’re there for support and to help and you take it very seriously if you’ve joined this site! But go to the hospital once in a while and talk about her favorite tv show or tell her some gossip about friends!!
I’ve learned that this condition occupies your mind 24 hrs a day / 7 days a week. It’s constant and its torture!! If you can get her mind off of it for 10 minutes, it’ll be the best 10 min of her day!!
Great advice -- I just had back surgery so I haven't visited for a week or so -- will be at least another week before I can get there -- but once I do, great advice -- which I will try to do -- and all the best. You were lucky -- thank goodness.
Anne-Marie
ah1979 said:
Hi Ama!
You sound like a great friend!! I just got out of the hospital a month ago (with a much less severe case of GBS), so it's very fresh in my mind!
The best advice I can give you is to keep visiting as much as possible....and some days, DONT even acknowledge that she's in the hospital!! One visit that I specifically remember, was when 2 work friends brought a pizza and we talked about sports for a few hours! I don't even think they asked how I was feeling, which was nice bc I was sick of talking about it!!
Obviously, you're there for support and to help and you take it very seriously if you've joined this site! But go to the hospital once in a while and talk about her favorite tv show or tell her some gossip about friends!!
I've learned that this condition occupies your mind 24 hrs a day / 7 days a week. It's constant and its torture!! If you can get her mind off of it for 10 minutes, it'll be the best 10 min of her day!!