AnonymousSeptember 24, 2007 at 12:21 pm
Has anyone experienced major personality changes, perhaps even mental illness after suffering from GBS? Does Dr. Perry’s book address that? What is the name of his book? My husband seems like a different person. It’s devastating to our family. Thanks for your help!
AnonymousSeptember 24, 2007 at 2:54 pm
Thank you for your question. I can only answer for myself. When I found out I had GBS I was devistated. I didn’t want to live and was angery at myself and those around me. I was furious at the people that make the Flu shot as this is where I caught it from.
Then one night in the hospital a voice spoke to me. It said your GBS isn’t as bad as so many. You can walk with a walker and you have the use of your body. Only your feet and lower legs are numb.
I started seeing things different. I made up my mind that I was going to WALK AGAIN and I did in 3 months. A great gift to us is the care giver. this is our support and strength. BUT> listen to us. if we need to cry then cry with us. Treat us as a human not as a cripple. We will get well in time. As I told a doctor once. You have no right to judge me until you have walked in my feet. or felt my pain. I asked my caregivers to look for improvement in me every day as I did. Do not show pity for me or patrinze me. walk beside me. encourage me show love and the greatest thing I did was turn myself over to my God and said I give this to you. I cannot do it without you. and something happen. I was at peace. and still am 9 months later and since my GBS I have had a triple by-pass.Remember WE WILL RECOVER. and as a care giver please give us support—strength–and love. You are in my prayers (Steve)
AnonymousSeptember 24, 2007 at 5:23 pm
Good reply, Steve. Yes, one can have a personality change. This is a serious disease and when you’ve experienced something like this, there can most definitely be post traumatic stress. It won’t always be there but neither will it go away “totally”. A person is forever changed with this experience. My anger at being robbed of my life, as I knew it, was Huge. I was a newly wed of 2 months and we had dreams and plans . . . Please, you must give your husband time ~ much more than you think he should need! This has changed his life and there is a grieving that comes with that. And then he has to figure out where/how he is going to fit in life now.
Dr. Gareth Parry and Dr. Joel Steinber, colaborated on the book :
Guillain-Barre’ Syndrome (from diagnosis to recovery)
an American Academy of Neurology Press Quality of Life Guide
This is a small quote: “GBS is stressful to both patients and their loved ones. It is natural to be scared and even overwhelmed by worries about the future.”
I believe that you will find the book enlightening but even more so continue to read what we write ~ those of us who’s lives have been so dramatically changed. Our experiences go way beyond what can be written in a book!
I respectfully submit to you that if this is so devastating for the family, you can’t begin to imagine what it’s done to your husband. Hopefully soon we will get to meet your hubby here on the forums. Hugs to all.
AnonymousSeptember 25, 2007 at 11:55 am
Someone who has had a severe case of GBS most likely will a suffer severe change in personality as a result of a disruption in his or her pattern of living that may well be permanent. My wife got severe GBS a year ago last July while at our house in England. The cost of flying her back to the USA was over $40,000 alone. Luckily, our medical coverage was good, and she got the benefit from a quick diagnosis (3-4 days) and early ivig treatments.
From then on, I would say that her medical assistance ranged from well below expectations (Emory University Rehabilitation) to good (initially with local physical therapy) to below expectations (lately with local physical therapy).
The unevenness of the medical care puts a lot of stress upon someone already trying to cope with a major physical threat to one’s existence. Combine that stress with simultaneous occupational threat and stress caused by the erroding health of one’s parent. One lives in fear of what the future may bring and how it is possible to cope with such a broken world.
Few friends and associates are helpful, although I suppose they mean well. They want to know that the one who is is is getting better and better, although the actual experience of life is the opposite, at least for one beyond the age of forty. Look in the mirror; can you really say that you look better now than you looked a year ago? Or maybe five years ago? Well, it’s damned difficult to find a person asking how a post GBS person is doing who will listen when you say, “Now that you ask, not so well. She was better last month and seems to be suffering from residuals that make walking difficult, and has difficulties holding things in her hands, and may never be able to work again.”
There is a wall as tall to climb and as diffucult to circumvent as the Great Wall of China that separates the healthy from the infirm.
Typically, caregivers also find that Great Wall going up around them also. It is no longer possible to participate in many of the activities one participated in pre-GBS, and others really don’t comprehend why that is so. One gives them up willingly because the need is so great; however, one is still cursed with memories.
The solution? Short of the miraculous recovery of the ill one, the is no solution. However, it is possible to become further involved in the lives of those less fortunate than oneself and from that lose contact for a little while with your own misery. I remember once talking with Malcolm Boyd about a nearly impossible situation that I have since forgotten and asked him what I should do. His reply? “Always remember that as long as you are alive there is a good chance that you will outlive the problem.” He was right, and that advice has sustained me over the years with many other problems. Time changes all things, and what time doesn’t change, death will.
AnonymousSeptember 25, 2007 at 11:31 pm
I agree. I use to play softball, bowl, run, and many other things. When you go from that to being paralized is a devistating blow. I thought about suicide at times, depression, and being told that I would never function like I use to. Many months passed and on day at the neuro’s office I got out of the wheelchair and walked a couple of steps. In the medical report he said it was a miracle that I could even walk. I am not a quiter and never will be. Just pull your boots up by the straps and just do it. I still have problems with hyperextending my knees when I walk. It sounds like he is having problems dealing with your problem. He needs to understand it and go with you to the doctors office. Sometimes the meds will also change your personality also.
AnonymousSeptember 26, 2007 at 1:06 pm
All these replies are so good! Thank you for sharing them!
GBS can be a painful, hurtful, confusing, illness that so little is known about. People handle things in different ways. Also, if he is on Neurtron (sorry about spelling), a major side effect is depression.
I wrote a book about our experience with GBS. My daughter got GBS at age 4 1/2 and was completely paralzed with in 24 hours of the onset but because of her age, we didn’t know what it was for 3 days. I went through all the emotions of rage, anger, pain, asking why, everything you can imagine. I did come to terms with what was happening and made a choice to make a difference in someone’s life THROUGH GBS. I began (slowly) to not resent GBS or what my daughter was experiencing. I wonder if my book could encourage you or your husband? It is only 96 pages and only $9.99 So far everyone who has read it, has been encouraged. You can get it off Amazon.com (just put in “Amy Kuncaitis” in the search line) or you can get it off our website. The book is called “Joy in the Morning”. I am not saying this to promote my book to anyone, I just want to help. That was my 100% intention in writing this book- to help even one…
My prayers are with you as you battle on…
Author of “Joy in the Morning”
AnonymousSeptember 29, 2007 at 4:29 pm
Great question- and great responses! I’m going through the same thing with my mom. She’s not the same person anymore and I keep hoping she’ll come back with recovery, but I fear the longer she allows herself to “slip” then she might not ever be who she was. I am trying very hard to stay positive and I know she’s so much better than she was a couple months ago, but she still is talking pretty much pure nonsense and her spark is gone. I haven’t seen her cry and I haven’t seen her laugh- it’s like she’s just existing. I’m going to check on what drugs she’s on- the more I read some of these posts and responses, I’m starting to think she’s on too much or not the right kind of drug.
Thanks for asking the question and thanks to everyone who responded. Everyone is so helpful and full of good information here!
AnonymousSeptember 29, 2007 at 5:44 pm
JennIvy ~ chances are that your mom is [U]Not[/U] allowing herself “to slip”. Neurological diseases are most difficult and often come with post traumatic stress. She does not want to be where she is ~ her life changed dramatically without asking for it 😮 There is most definitely a grief that comes with this change. It can take a very long time to figure out just where you fit into life now. There is just so much loss to accept . . . Your mom will never be “who she was” ~ she has been changed. That doesn’t mean she’s a totally different person but this experience has permanently changed her in many ways.
Are you a mom yourself? Can you remember thinking you knew what it would be like to be a mom but it wasn’t until you were that you begin to really understand? Please continue to be patient and listen to your mom and what she tells you her needs are. She needs your total support ~ even when you don’t understand ~ to move forward in her journey.
Many of us wouldn’t have survived the experience if it wasn’t for our caregivers ~ those who accepted that our life had been turned up-side-down and were willing to walk beside us even when they didn’t understand.
I wish your mom “well” with courage and patience for what maybe a very long journey.
AnonymousOctober 4, 2007 at 9:31 am
Personality changes…. I’m willing to bet they are a guarantee. I don’t see how anyone can go through or be thrown in the middle of a syndrome like this and not have changes. I’m struggling daily with my mind and actually I’m doing pretty good physically, all things considered. I’m on 3 anti-depressants and anti-anxiety,pain,nerve rebuilding,muscle relaxants,sleep aids….. all of these were not formulated to be in a coctail mixed together. I go through depression times feeling the “why me” and “what did I do” along with the irritability of not being able to do the things I expect myself to be able to do. It is really tough to have a sudden change in anyones life and still be the same personality. I’m 48 and had to rely on others to wipe my butt for 9 weeks. Sorry if I sound angry and maybe I am but like I said there are times when I just want to scream and times when I want to disappear. “I’m” looking as I type this and I have refered to “myself” so many times I’m about to make “myself” sick. It’s the poor pitiful me coming out and this side of my personality is not pretty. I need to close before I make someone mad and it would be THEIR fault and not MINE! Personality changes…….normal?
AnonymousOctober 4, 2007 at 10:17 pm
My case of GBS was minor compared to most.
I had it 5 years ago.
I have recovered probably 95%.
(Only knee pain/problems remains)
For me, GBS triggered PTSD which caused me to have
Before GBS, I had no idea what a anxiety/panic attack was.
I still suffer from anxiety and panic attacks once and awhile.
Whats bizarre is the attacks are triggered by non-health things.
Just random stuff will trigger an attack.
Prozac solves the problem for me.
If I remain on them, no anxiety or panic attacks.
When I go off them, I get about 6 months of “good”,
then the anxiety/panic comes back.
I am hoping that as time goes on, those 6 months can expand out to a year, then maybe 2 years, etc.
The bonus, for me anyway, is that Prozac didn’t have any side effects with me, and didn’t alter my “mood” like some of the SSRI drugs do.
AnonymousOctober 5, 2007 at 5:33 am
Looking back I can see that my personality has changed in the following ways:
1) I am much more reluctant to go out because it takes so much energy to get dressed and to where I am going. Therefore I don’t have as much external information/stimulation and contact with other people. This has made me more reclusive than I used to be and even more introverted, if that was possible. In addition, due to problems with my eyes I can’t read much or watch TV so I get very little external information – I don’t know much of what is going on in the world so I feel eternally [U]stupid [/U]when trying to converse with normal people. I don’t know the latest TV shows, or movies, or even the news, though I do try to make my way to CNN.com once or twice a week.
2) Anxiety and panic attacks are apparently part of my package deal with other autonomic symptoms. It took me awhile to realize the anxiety wasn’t attached to anything in particular so I spent many months having freak out moments without knowing why. I thought I was going crazy. Now that I know it’s part of the disease when it comes on I just do my best to manage it and try not to beat myself up when it does happen.
3) I never have really cared too much about material things but now I care even less about them. I look around at all the clothes I don’t wear anymore, all the things sitting out I have to dust and I just want to pack them all away in a box to simplify my life.
4) My tolerance for frustration has evaporated – I can take minor frustrations when I have had enough rest but by afternoon I start dropping things, tripping, running into things etc. and that really frustrates me. Then I get mad at myself for not being better and at some point in this fury I realize, or my husband tells me, that I need a nap. Simple exhaustion can account for much of my personality change. I am better when well rested.
5) I don’t think as well as I used to either. I forget things constantly, I have trouble remembering names, events, directions, and even to take my meds sometimes. Things I used to know very well I can no longer remember, it’s like trying to drag a ball and chain through mud – just can’t drag that memory to the surface. My ability to concentrate goes along with that – I have recently downloaded some e-books from our local library, they are audio books narrated by someone with a non-obtrusive voice. However, I can only listen to about three sentences before my concentration has wandered and I forget where we were in the book. If I go a day between listening to the book I have to start over because I can’t remember what it was about.
6) Frequently I get overstimulated – I don’t know if this is a nerve healing thing or a characteristic of me – but when in a room with lots of people talking I can hardly distinguish one voice from another enough to hear what they are saying to me. Bright lights, loud sounds, too much touching – all these things can make me overstimulated and then my brain shuts down and I just stare at the wall trying to make sense of it. Fewer voices, low light, soft clothes – these all help reduce the amount of information I have to process and thus the overstimulation.
I don’t know whether these are permanent personality changes or temporary due to nerve damage and healing. To me it seems like my body has so much to deal with right now my brain is getting shorted in it’s energy needs. It has gotten much better in the last six months and it probably took me as long to realize I was different too. It’s very hard to get an outside perspective on your personality when you are sitting in the middle of it. LOL Nevertheless I know that things have changed and the hard part is that most people don’t see those difficulties any more than they see the physical limitations. People say, but you have a wheelchair now, lets go out to a concert! And I automatically think of all the people, all the loud noises, the ever-changing lighting situation and I know that overstimulation would be part of the deal, not to mention the tremendous amount of energy needed to get ready, get there – and stay awake past my usual 7:30pm bed time. That’s really hard to explain to people who haven’t been through something similar.
I don’t know if I will ever be the audacious, smart-ass adventurer I used to be. That part of my life might be over now, and I’m too old to be rafting the Zambezi and dodging crocodiles anyway, regardless of my limitations. I am so unbelievably grateful that my husband has the patience of a saint and the ability to get me to see things about myself I am unable or unwilling to see myself. I hope with time things might get back to some version of normal but if it doesn’t then I will work to create a new “me” and hope that those who used to know the “old me” can adjust.
Patience and time – one I have little of, the other in abundance. Together we’ll waltz towards recovery. 🙂
AnonymousOctober 5, 2007 at 11:42 am
Julie you wrote a chapter from my life. I don’t think there is anything left for me to add. I thought while reading this that your story was extreme, but then I could feel myself relating to most of the feelings. I can see where things with my personality have changed, some that you mention I am too stubborn to admit but the truth is still there. I don’t think you mentioned that you had become bossey? From spending so much time asking for things that I need when I seen a person, I bark out things I want them to do. Things that I request are stupid, but just putting the sweeper away seems to finish that job and give me a sense of being needed. Even if I was too exhausted to put the sweeper away. Most jobs take both of us to complete it these days. I can go to the store and buy the groceries, bring them home but then I am so exhausted to put them away. I can only concentrate and cook for short periods of time. If I take on a cooking project that needs alot of attention, I find myself too tired to enjoy eating. I am exhausted and don’t have the energy to clean up the kitchen. I am lucky my husband will do the dishes but the next day I am cleaning up the kitchen. That lack of concentration is not helpful when doing laundry either. I wash a load one day and the next I remember it is in the washing machine. I can walk past the dogs water bowl and see it is empty, but until the dog picks it up and brings it to me, it does not occur to me to fill it up with water. Same with my plants. I see they are wilting but it does not occur to me I am in charge of if they live or die. Not good when you are sitting on the patio looking at the containers with wilting plants, wondering why the veggies did not get very big this year. I wonder if this goes away the longer you are recovering! Oh will the questions ever come to an end for those who have gone thru this illness? Nice threads that have really made me think! I am always glad to see posts that require everyone to give their opinions. Thanks everyone!
You must be logged in to reply to this topic.