New Member – could use a hug..
AnonymousOctober 18, 2006 at 12:29 am
Hi, everyone. As many of you know the start of this journey is an exhausting one. My father was diagnosed and admitted to ICU on August 13th, 2006. He is still on the tracheotomy 9 weeks later, still unable to breath on his own. He is 66 and was fine and recovering from flu one day and completely incapacitated the next. In the space of 14 hours he went from numb fingers and numb nose to unable to breath and nearly comatose. He has 3 neurologists working with him and all 3 have in their combined years of practice, never seen a case that set in so fast. He is completely paralyzed from his chin down. last week he was able to move the upper part of his cheeks in an up and down movement but up until now we have been communicating by asking yes or no questions and he is able to move one eyebrow 2 times for yes and 1 time for no. The doctors tell us that there are 2 types of GBS one that is ‘demylinating’ where the disease takes the myelin off and the other is ‘Axonal’ where the cables of the nerves themselves are affected. They have told us my father has both forms. They have given him 3 or 4 IVIG treatments and have done NCV tests and EMG tests ( 3 or 4 times of each) and the prognosis that they have given us based on the results (or lack thereof) of the nerve tests is that my father has about a 10% chance of walking with assistance a year from now. At this point, his muscles have atrophied to where they lay flat on the bed. He’s in pain all the time and although he receives morphine and sedatives to help him rest you can tell he is getting more and more depressed as he now turns his eyes away and won’t look at you when you talk to him. He is in a hospital 5 hours from my home and I drive there every two weeks to see him. I am a single mom and so you can imagine the stress all of this is putting on everyone. My mom and dad are still together but my parents home is in a small town 2 hrs form the hospital and so my mother also has to drive really far to see him.
Has anyone else’s GBS been at this level of devastation? The NCV and EMG tests show that there are no signals at all going to the rest of his body below his neck. Has anyone else been here and then come back to where they can move again? I don’t even wonder about walking, I am hoping for a closer miracle like him being able to breath on his own or gain the ability to move even a finger..
This is so heartwrenching and reading the stories in here has helped. I just hope someone out there has some insight..
Thanks for reading and for the hug..
AnonymousOctober 18, 2006 at 11:40 am
I did not experience this severity but I sympathize with you and your family. Hugs and prayers for you all are being sent your way. Just take it one day at a time…slow healing is about all that is common with this illness.
If you haven’t already done it, contact the following for some additional information and caregivers packets:
GBS/CIDP Foundation International
The Holly Building
104 1/2 Forrest Avenue
Narberth, PA 19072
Voice: 610-667-0131 [IMG]http://www.gbs-cidp.org/images/blu_diamond_sm.gif[/IMG] Fax: 610-667-7036
AnonymousOctober 18, 2006 at 6:15 pm
I’m so sorry to hear about what is happening to your father. It must be so difficult to be so far away right now.
Please take anyone’s viewpoint about what level of recovery your father may or may not achieve with a grain of salt. Many, many of us were told or read that we wouldn’t recover beyond a certain point, and most of us have proved our doctors wrong. We have members who are still improving after many years.
Recovery is slow, and rest is the best medicine for your father. He should also be getting physical therapy daily to sustain his range of motion. I realize from your post that he’s bedridden and paralyzed at this point, but he still needs therapy.
I didn’t have a severe case, but there are many on this website who did. I hope they will share their experience with you, and give your father some hopeful news.
Best wishes for your father’s recovery. My prayers are with him and with your and your mother.
AnonymousOctober 18, 2006 at 8:17 pm
hi renrose & welcome,
ditto suzanne. your docs seem knowledgeable but in reality they do not know the final outcome. on the down side he has been hit hard. on the up side the quicker the onset the quicker the recovery can be. the cheek movement is a good sign of start of recovery. make sure he is getting passive PT. zoloft for depression. there are several that have been as bad as your dad & can walk to different degrees today.
many of us take neurontin [gabapentin], a non-narcotic, for peripheral neurological pain. neurontin is specific, it can work even when ordinary pain killers do not, even the opiates like methadone. great success w many. v safe. start at 300 mg 3X/day [900 total] & increase by 300 every other day till pain stops. taking it 6X/day instead of 3X/day gets more bang for the buck. 3600 is theoretical max/day that your body can absorb. 5600 is practical absorbtion max/day. the only reason for the slo build up is it may make you sleepy till your body gets used to it. in his case the sleepiness is a good thing.
take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousOctober 18, 2006 at 10:00 pm
Suzanne & Gene:
I thank you so much for your kind words and thoughtful insight. This has truly been an ordeal that has shaken our family to the very core. My father, is getting PT every day and the therapist has even had him sitting on the edge of the bed. I am very happy with the care he has been receiving and the nurses and docs are all very helpful and good to him. They even put a radio in his room for him. He is an active man, woodsman, hunter, fisherman and drove a concrete truck right up until the day before he was hospitalized. I hope and pray every day for some small improvement and hope that others who have been where he is now can shed some insight into how long it took before they started to see movement in the extremities or even how long before they got off the vent.
Thanks again and good luck to you as well in your recovery.
AnonymousOctober 19, 2006 at 12:30 pm
My heart goes out to you and your family.
My husband became ill Feb 2005 and three weeks later ended up in ICU. He was vented for 11 weeks. He was diagnosed beginning of May 05 with CIDP and put on Prednisone. He did not have any axonal damage.
Our daughter was 4 months old when he got sick. She was almost 11 months old when he was released from the Rehab Centre. I was fortunate to live in the same city where he was hospitalized.
I bought a radio for my husband too. I also took a lot of pictures of our daughter and blew them up large so I could put them on the wall. Unfortunately it also affected his eyes so he couldn’t see or had double vision at times. We also borrowed a portable dvd player so he could watch movies to pass the time. The ICU nurses were so nice and they would even tape some hockey games for him to watch.
The stress is really hard to cope with but I found comfort reading the posts on this message board. There’s a lot of great people who know a lot about this illness.
Husband diagnosed CIDP May 2005
AnonymousOctober 19, 2006 at 9:39 pm
Thank you all so much! I am so happy I found this site. I wake up crying some nights and when I look at my bank account (gas here in Canada is horrendously expensive! it costs me about 200$ round trip each time I go) I cry again. All of your hugs and warm thoughts have done wonders for my morale and knowing that you are all right there when I need you is a godsend. Bless you all.
AnonymousOctober 19, 2006 at 10:16 pm
My thoughts and prayers are with you and your family. I hope your father begins to show signs of improvement really soon. My fiance had a very severe case of GBS that almost took his life due to the infection he had along with it, but since he’s in his 30s and was “only” ventilated for three weeks, I don’t think his story would inspire you too much. However, the doctors told us he’d be in a wheelchair for 1-3 years, and he was walking after 2 weeks, so you can’t always go by what they say. Nobody can predict what the future holds for anyone with GBS. On the plus side, I’ve met close to 100 people who had GBS at some point in their lives, and by looking at them, you really can’t tell that they were ever that sick. 66 isn’t that old either, so your father has a really good chance of overcoming this.
Keep you chin up. When all this is said and done, you’re sure to see a huge change in yourself, and you’ll be so proud of yourself by how much you’ve grown from all this and everything you’ve learned. We’ve all been there, and you have a new family now.
AnonymousOctober 20, 2006 at 6:13 am
Thank you. I can already feel the love from you and the others. I so desperately needed a place to call home where everyone knows what it is to be/have/feel GBS and all of it’s evil twins. Thank you all so much. I am going to see my Dad on Saturday and I will bring updates of his condition upon my return on Sunday.
Love and Hugs,
AnonymousMay 6, 2007 at 11:44 am
My Dad was as bad as yours. He was in ICU on a vent with his eyelids taped shut for I think 5 months. The DRs told us that there would be no way to predict what the nerve damage and recovery would be.
While he was on the vent and unable to move, our ins company decided he was not going to get any better because he had been in ICU with no change for so long. They wanted him to move to a long term vent care hospital. We called the ins comissioner and hired an attorney. Soon after this he started to show signs of improvment. He slowly improved and eventually a year+ later with alot of pt was able to walk and do almost all of the things he did before.
They gave my dad versaid when he was at that stage of being trapped in his body. It is an amnesiac/anxiety type drug. He does not remember alot of it. He was a big golfer and said he replayed every golf couse he had ever been on in his mind. He learned to disaccoiate himself from his body and get lost in his thoughts. I would get him golf books on tape, i would read him the police blotter from a local paper which he found highly amusing. He liked to hear me read the cards to him that people sent. Remind the nurses that he is in there (his body) and fully aware just trapped in his body.
Try any thing to lift your dads spirits. Read him positive recovery stories and give him hope.
AnonymousJune 19, 2007 at 2:28 am
Erin, I am so sorry to hear about your dad! How is your mom holding up? It looks like it’s been a while since you first posted- how is he now? I know how difficult it is to be far away and not know what’s going on. I’m 3000 miles from my mother, but fortunately, the whole rest of the family is there (fortunate for her and them- not so much for me).
It’s true- since this is so rare (not that you can tell from this web site), the doctors really don’t know what to expect. That’s frustrating too- you count on them to know what they’re doing and I think they’re just doing what they’ve been taught without any hands on practical knowledge.
My thoughts are with you and your family.
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