long term recovery?
AnonymousJuly 6, 2008 at 6:49 pm
My 73yr old mom has asked me to write. She was diagnosed with severe axonal GBS in Oct 2004. With the ups and downs, she has been able to take approximately 50 steps in a walker at her highest peak. For the past 6 months she hasn’t walked again. She’s asking if there is anyone out there who, even after almost 4 years, was able to walk again? She still has her feeding tube and trach with supplemental oxygen and most days still needs to rest on/off on the vent. She sleeps on the vent at night. Any input would be appreciated. Thanks.
AnonymousJuly 7, 2008 at 10:44 am
Axonal damage is damage to the core of the year itself, which is very difficult to heal; if it heals at all. Most neuros speak of the “two year window of healing” which is when most healing seems to occur. That is not to say that there can’t be more improvements down the road, but I wouldn’t expect too much, especially in the way of walking. The older one is the harder it is to make improvements, that is why children seem to recover so much better than adults. I wish I could be more positive, but I have been a reguar member & reader of this forum for 6 years, & many with GBS do not make the miraculous recovery that we were first told we would make. Tell your mom to make the most of what she does have & try to keep a positive attitude. I hate saying that, but it does help us to deal with these chronic illnesses.
AnonymousJuly 7, 2008 at 7:45 pm
As Pam states, axonal damage is damage to the nerve itself. Most GBS is damage to the insulation (myelin) that coats the nerve making the nerve conduction less effecient but still there. It is harder to heal if the nerve itself is damaged because there are less nerves to tell muscles to work. You state two things that I wonder about. First you say “with the ups and downs” and that your mother has not been able to walk at all the last six months. the question is “why”–did she become progressively weaker or are things getting better and worse. If the latter, that might make one think about CIDP instead of GBS. CIDP is ongoing damage to the myelin/nerves and she might respond to treatments to help stop the ongoing damage. This is worth asking the neurologist about. this being said, it will be really hard to get back to walking after six months without doing it when you are 73 years old–lots and lots of exercising and working on it and balancing. If people are “fiesty”, age does not matter, but there are some people that would rather spend what energy they have to “be” with others and do things in a wheelchair rather than make so much effort just to try to walk again. She will have to be really, really careful not to fall and break a hip since her bones would have gotten weaker without walking. I also do not mean to sound discouraging, just trying to be realistic that sometimes you have to pick the battles you fight after this blasted illness. I have learned more about compromise than I ever wanted to know.
WithHope (GBS 3/07)
AnonymousJuly 9, 2008 at 8:52 am
Thank you for your comments. I didn’t really expect to hear anything different from what you provided. I believe that my Mom is in a transitional phase toward the end of her life right now. I wrote because she asked me to, not because I was expecting new information. You asked about what I meant re the “ups and downs”. I was refering to the normal ebb and flow of GBS recover. She has had numerous set backs (infections, re-hospitalizations, plastic surgery for pressure wound repair, IV infiltration burns + also has Parkinson’s on top of everything). My Mom has been a fighter through it all. She’s tired and beginning to contemplate ending her fight. Thats okay too. We have been and will continue to stand behind her with and in front of her as needed with wherever she is and needs to be.
AnonymousJuly 9, 2008 at 11:17 am
I did not mean to sound discouraging in my reply. The main point I was trying to make was that people can recover, but sometimes you have to prioritize and pick the battles that you fight. Keep encouraging your mother that walking is not “essential” to life or to being a vital part of this world. I am sure that her love and support fills a huge place in all of your lives and one does not have to walk to share that. Walking is important for independence and when one has to give up things that have been part of your life except in infancy, this can be hard to adjust to. Please tell her that we all here understand tired and loss of health and all the changes that that brings in life, but that does not mean that life cannot be good. It just means it may have to be good in different ways. Sharing the love of family and friends is the most important thing that any of us can do.
I just wanted to say this and also that coming to acceptance that life is winding down is not the same as giving up. There is a peace with knowing that there is a better place after this that does not involve struggling to make one’s body move or pain or limitations. I am looking forward to dancing in heaven.
WithHope for a cure of these diseases and grace to continue until then.
AnonymousJuly 9, 2008 at 11:30 am
Katy, you have been a great daughter and caregiver to your mother.
With having GBS and her other illness since 2004, It has been not only a hard but long fight she has been through.
What a wonderful family your mother has, to understand how she feels and are ok with it and will stand behind her at a time when she needs it the most in her life.
It’s hard knowing you will lose a loved one and the peace you will have is knowing she will know longer suffer when she goes.
My prayers are with your mom and family.
AnonymousJuly 9, 2008 at 12:26 pm
God bless our families and caregivers. You exemplify what that is all about and I have great respect for those who choose to honor the wishes and live by the choices their loved ones make. Difficult as it may be, Life for all of us will someday end and I hope your mom can enjoy every moment she has with you all until that time arrives for her.
Love her, honor her, and respect the choices she makes. Help her find comfort and peace in each day. My thoughts and prayers are with you and your family.
AnonymousJuly 11, 2008 at 1:46 am
My thoughts and prayers are with you and the family. It’s been a tough road for your mom. I can sense how “tired” she must feel. Most of us, if not all, have been discouraged many times because it can be very hard. Thank you for the love and support that you give to your mom. Hugs to all.
AnonymousJuly 11, 2008 at 11:56 pm
Kathy, I know your mother is a beautiful person….She has to be to pass these good genes on to you and her other children as I am hearing what and how you are talking.
Hang in there Kathy, you will be blessed, even as you are being a blessing now.
Love and Prayers,
AnonymousJuly 12, 2008 at 1:15 am
Katy, there is very little I can add that the others haven’t said, except to send another big hug. Your mom is so fortunate to have you with her-how tired you all must be. Tell your mom, if you haven’t already, that whatever she wants, you will honor her decision and support her till the end. As a mom, she too, needs to hear from your lips, that you will be ok too. God Bless You All. Let us know how things are going anytime you want. Tell her a big hi from all of us and add a hug. All my best wishes, Emma
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