Honest input needed from long-term GBS’rs and caregivers please

Hi Erin ~ we have a new gal, Shirley, from CA and she was vented for 14 months! Go to the “seach” box and type in Shirley. It will bring up her post about vent dependence. She has an amazing story and I have messaged her asking her to return and tell us more.

She would be the first to say “never give up”! And I will second that. Just keep meeting your dad’s needs, one step at a time. Don’t think about the months or years, just the day that is at hand ~ then it becomes “do-able”.

I will keep your dad and the family in my prayers.

Welcome Erin – here’s a big cyber hug for your dad, you, and other family members. You are all in our thoughts and prayers. Good luck and good health!

I was one of the lucky ones. I got “diagnosed” quickly because I was good friends with my primary physician. I say diagnosed because they kept looking at MS but finally decided to go with GBS. Within a week of symptoms I was placed in Columbia-Presbyterian in NYC because I was having extreme difficulty catching my breathe and they thought it was spreading to my lungs. I truly believe the rapid response to my symptoms kept me off the ventilator. Through my recovery, I met several people who had it extremely worse than me. I was released from rehab at the same time as someone who had been on the ventilator and was still worse physically than I was, but she had been in rehab for many months and was able to start functioning at home. You want brutally honest and I can respect that. GBS is obviously scary, we don’t want our immune system to be compromised or taxed any more than it has been but the sanitary and unhomey environment of hospitals and rehab facilities drain our emotions. I for one fought to go home from rehab because of my rapid response to phs/ocu therapy. I still deal with numbness and an inner pain in my hands and feet. I still have trouble with words sometimes. No one sees this and of course no one understands this. April is my 6 month mark and I know I am one of the lucky ones. I remember the others I saw and the determination on their faces to get through this. All I can say is keep the faith. 🙂

Erin,

I have been thinking how to answer your question since you posted. Honest answer is that I dont think any of us can know what the outcome will be 6months, 1 year or 3 years from now, 😮 So frustrating to say that, I can imagine what it must be like to hear that. All I can do is go back and tell you of people who I have spoken to that have been in a similar situation. Frank, who’s sister posted as Rose, is a very good example. Frank unfortunately coded a few times during his stay in hospital, and went through an absolutely horrible time, spent months and months with a trach. What makes me think of Frank when I hear your dads story, is that when I initially started speaking to Frank over the phone, he would only be off the respirator for a few hours at a time. Frank also, if I remember correctly was able to move his shoulders before gaining the use of his hands and feet. His recovery was very, very slow, and often he had setbacks which, at the time made him, and his family feel so despondent. Frank has been at home now for a number of months, I havent spoken to him lately, but last time we spoke he was recovering slowly, but doing very well.

One thing you mention is that he has had 3 cases of pneumonia. This in itself is something that takes a huge toll on the body, add to it the loss and damage to nerves, and you have a body that takes all the more longer to heal. Your dad in essence has had beating upon beating upon beating without allowing the body time to heal. It has always been said that if there are complications with GBS or CIDP, things take far longer.

It is often so difficult to see that anything is improving, but already by you saying how he is able to be off the respirator for a few hours, he can move his shoulders which he wasnt able to do at a certain point. Also, at least he can mumble now, even though he may look like a stroke victim. Maybe you should start a diary without telling him, and just mark off the subtle little changes as they happen i.e if his little finger starts to move etc. You may be able to brighten his day a few months from now when you tell him what changes you have seen. Each and every tiny little thing is an improvement, but it’s so difficult to see these as such when living with it everyday.

As for residuals down the line, they may very well be long lasting e.g. the face may sag, eyes may droop when tired etc. Also, depending on the damage to the nerves there are different scenarios too. May need a wheelchair, or a cane or maybe only his legs drag a little sometimes. This is the most frustrating thing about GBS, nobody knows, and that includes the doctors.

It is easy for me to tell you to try and keep his mind active, but not so easy to try and find something that could do that. At this point he is probably so tired he doesnt care and possibly just wants to sleep. If there was only a way to allow patients minds to be occupied in something that means a lot to them, I think it will help in a big way to heal their minds, because unfortunately this doesnt only afffect our bodies, it does our minds too. By this I mean that it is so devastating, it is horrible to see ourselves the way we are now as opposed to what we used to be. When we dont feel we can contribute anything anymore, we become depressed, hopeless, angry, and I can probably go on forever – but I wont waffle anymore 😮 .

Sorry about the long post with no definitive answer.

Dear Friend Erin ~ how my heart hurts for all of you 🙁 This has been so difficult for you and your family and your dad. I don’t have answers but I can tell you, I care. Please stop, take a deep breath and feel my cyber hugs around you. This “family” wants to support you any way we can. Please come here as often as you need for advice, questions, and a “safe place” to feel whatever emotions you need to. Hugs, hugs, hugs.

Erin ~ I forgot to mention the “steel sheet” thing. When I was first stricken I couldn’t have anything touching my legs as it [I]hurt so bad [/I]and [I]felt so heavy! [/I] I actually slept with a stool over my legs to hold the blankets up. (I had no idea that there were assistive devices ~ I had no quality medical care). The pain with GBS can be totally excruciating ~ narcotics didn’t touch it for me. If only I had know about neurontin . . . So, that may be what your dad is trying to tell you. You also mentioned his “perception”. It is so difficult to tell others what this disease process feels like. What he tells you it is like [I]is for real [/I]at that time.

Keep coming back with your questions. Hugs 🙂

First of all, I am one of the lucky ones who has made a fairly quick recovery, so it is easy for me to say dont give up hope … but there were days when i did want to give up and if someone had given me the opportunity i have no doubt that during my lowest moments i would have taken it. But then i wouldnt be where I am today.
GBS is frustrating and one of the worst things is even if you accept you WILL get better, there is no knowing WHEN or how long that will take.
I agree that you need to focus on the little things … I can remember the first time i could lift my hand, i felt like i had moved mountains. they might seem like little things but when you have had no movement whatsoever they take on new significance.
You say you feel sad about yout dad maybe not being able to live the life he used to … I can honestly say after being in a coma, on life support and totally paralysed, I was so grateful to be alive. A lot of people have said they become a better person for the GBS experience … you learn to appreciate the little things and you truly understand what people with disabilities go through. I can rememebr the day i took my first steps witha full support walking frame. I was so proud of myself and all i kept thinking was if you had told me a few months earlier i would have to walk with a frame i would have been devastated, and here i was celebrating! To me that was reaching the point where if things didnt get any better, well i could live with that. easy to say now that i am living a normal life, but believe me your perception of things changes after GBS and you reasses your goals and priorities.
As for the confusion, that comes with the territory – the drugs, long term stay in ICU and also lack of movement (i couldnt turn my head or eyes so couldnt see what was around me so imagined my surroundings were totally different to what they were) I hated having anything on my hands or feet and had to have them uncovered at all times and i am normally the type whop likes to be completely covered in bed. Go figure!
Hang in there and we are all thinking of you

Erin, you and your mom are doing great, keep up the positive attitude. moving the shoulders first is good news, that was the first thing, along with my upper thighs, that moved for me also. with pt working his muscles he should be improving slowly down to the hands. my pt put rectangle soft sponges in my hands from the 2nd day on, to keep my hands from closing tightly. i use these same sponges everytime i go into a paralysis event. when i was finally able to move my hands i would squeeze those sponges everyday, i attribute that to my hands not being in bad shape now. you say your dad is an outdoorsman, he will always be an outdoorsman. there are ways to hunt, fish, hike, bike, camp and do almost everything he did before gbs. maybe he is depressed about not getting out in the fresh air-i know that was my biggest obstackle to get over-being stuck inside, against my will. i’m an outdoors person also, i know how trapped he feels, it is hard to put into words. when i was down i had to have the curtains opened all the time, it helped alittle with the confinement issues one goes through. is your dad the magazine type? does he like to read about fishing trips, hunting or camping vacations? if he does take magazines with you and read him an article or two every visit. it will get his mind going on the future, thinking of things he can work towards, goals he can set for himself. my goal was fishing with my kids and hubby, even though i’m the only one who takes the fish off the hook and put the bait on the hooks, i still needed to go. until i had accomplished my goal i didn’t feel i had come all that far, even though i had. you keeping a journal for your dad is a great idea, he will appreciate it. keep in mind, every minute your dad is breathing on his own is a milestone, one step closer to getting off the vent totally. it may take a month, a year or even a few days, no one knows not even your dad. gbs takes time, healing will come-it might be complete or it might not be, only time will tell. there will be peaks and valleys, but with a positive atmosphere and good support nothing is impossible. hang in there, give your mom and dad a BIG HUG for me and please take good care of yourself-that is the important thing you and your mom can do to help your dad. take care.

Erin~

One of the things that I had problems with was the sensation of there being a metal rod underneath my shoulders. Turns out it was the seam of the pull pad that the staff uses to help move someone who’s paralyzed.

Unfortunately, I didn’t figure it out til I was out of rehab. I still have issues with sensation on my upper back. Most of the time I feel like I have a not-quite-sever sunburn.

I also had the problem with sheets and blankets on my feet and legs. Made me crazy!!

One of the things that made me more comfortable was a neck pillow – one that kinda looks like a horseshoe. I really wish I’d had it when I was hospitalized. Since the pillows that the hospital used had waterproof protectors on them, they would slip and slide and not stay where I needed them to be to provide support.

Maybe some of these things will help your dad.

With regards,
kate

Hi Erin. I’m Katy, and a daughter/caregiver for my mom, Barbara, who was stricken with severe GBS in Oct 2002 – 2.5 years ago. I was touched by your post – I felt like I was reading my own words. I remember asking those very same things about my mom at about the very same time you are now asking about your dad. I was so frustrated at the time and felt like people were avoiding my questions, that they didn’t want to give me “the bad news” that my mom was different than all of them and that she wouldn’t ever get better. But now, at a different time and place, I know that the respones, “everyone is different” and “hang in there” and “don’t give up” are so honest and accurate.

There are so many ways I could answers your response. First as a daughter/caregiver. I’m a bit scared to tell you, because at 8 months you may see my mom’s progress rate as overwhelming and feel hopeless about your dad’s progress and outlook. My mom’s progress rate was so similar to your dad’s. At 8 months she could hardly move anything. We used a letter board to communicate for almost a year. She had to re-learn how to swallow – but did with speech therapy. Now she eats normally. STill has her feeding tube for easy access for big pills and supplemental nutrition (weighs 30 pounds less than she did pre GBS) because she still can’t eat everything. Some textures are too hard to manage. Still has her trach and up until the last week went on the vent every night, mostly to recuperate from fatigue. But this last week she’s been off vent completely. We’re hoping to continue using the vent only sporadically if not at all. She can almost turn over one direction in bed now – can lift her right leg over her left then reach over and grab the rail and pull herself onto her side. She can kick, and move her arms. Her facial expressions are pretty normal – but her mouth doesn’t close the way it used to. When she’s tired her speech getss muddy and slurred and her voice doesn’t sound as strong as it once was. She can’t stand up on her own, but has new leg braces that are helping her learn to walk. She can walk up to 50 feet at a time now, rest, then go another 50 feet. Now we can transfer her into the shower where she can sit upright on her own and take a miraculous “real” shower. We have to be careful with water around her trach and she usually has to nap an hour or so after.

My dad’s a physician and we were able to bring MOm home to their condo 6 months after her dx. This would be impossible for most people because she was hardly moving and completely vent dependent. We started with in-home PT and OT, mostly range of motion stuff. Then she graduated to hospital PT OT outpatient 3 times/week.

The biggest change that has helped me get through this as a caregiver is a shift in my time perspective. Try to stop thinking in terms of “then” and “when”. Instead, think of “now”. We found that when we set time goals – like, “maybe you’ll be off the vent by Christmas” we were invariably disappointed. My own personal mantra has become, ‘Be where you are”. If I think of all that Mom has lost (the past) I get so sad. When I think of all I want her to accomplish ( the future), I get so frustrated and anxious and impatient. But when I look at her now ( the present) I just see my mom. Her body has let her down. But now I can lean into her and she can wrap her arm around my shoulders and hug me. For the longest her hug was leaning her face into the palm of my hands – that’s all she could move.

You will get through this, but it is a continual process of getting through it. It likely won’t be “over” – but then again many many people resume their normal lives with only fatigue as a left over. No one truly knows how far your dad will come. Perhaps one day you’ll write to us and he’ll be able to do so much more than my mom can do now! Right now, try not to focus on when it’ll be over. Just focus on today. And if that’s too much, focus on right now. Because truly, is there anything you can’t deal with right now in this very moment? The minutes begin to pass. And before you know it, you will be writing to someone new on the boards who is struggling with the 6 month mark.

That’s all my “daughter” response. I’m a psychologist and have watched my own adjustment process through all this the whole way. Adjustment is interesting, and people adjust and cope and deal with whatever is put in front of them. Remember that. You’ll do this – just like I and everyone else on these boards is doing it – you’ll simply move through it. And when you hit a rock or hard place, you reach out. You cry. You scream. You sleep. You talk. You pray. You think. You celebrate. You hope. You give up hope and then get it back again. One minute by one minute. Forget time. Time doesn’t mean anything anymore. It’s just a process that moves on its own time. You will get closer to your dad in many ways you never dreamed of through this. Look for those moments. They are just as important as his physical progress.

Good luck and best wishes to you.
Katy in Phoenix