Time Lines for Recovery
AnonymousSeptember 24, 2008 at 12:42 pm
My sister was struck with GBS June 23rd. She was in Fla Hosp ICU for 30 days, then to Select Comfort acute Hosp for 35 days. She is over 60 years old, she is still on a respirator but weaning off slowly. She has NOT gotten any muscle control from her neck to her thighs. (For some reason, we think because she was being treated for neurophathy of her legs) She CAN move her legs and control her feet.
She is very scared. She has asked me to go on-line and ask people who have been stricken with GBS and have gone through the recovery, what she can expect in time lines. She understands that people will have different time lines, but she wants to get some understanding as to what she can expect.
I will print your answers out and send them down to her and her husband, as I am now home in CT.
AnonymousSeptember 24, 2008 at 1:47 pm
WELCOME BILL AND TELL YOUR SISTER WELCOME TO OUR FAMILY.If you want answers this is the place to be. Do you mind shareing where in Florida your sister was. I live in North Fla.
Bill every one of us had fears and still have fears. I have dropped my fear and replaced it with faith.
I did’nt know what I had. All I knew was one day I was walking then that went to staggering and on a cold rainey day I could no longer walk. My feet and legs were numb. It took another 2 weeks before I was told to see a nueroligist. She menting GBS. I had 4 hour of tests and told I was to go from her office to the hospital. (I am scared)Get to the hospital and it was less than 5 mins through check in and then being pushed to my room. All of this was on a monday. I could see fear on my wifes face. (a 34 yr OR nurse
My treatment started that night and I make it. The next morning my doctor told me and the reason I was not told was she wanted me in the hospital 1st.
I had GBS and mine was a mild dose.(I was blessed) I would be treated with IVIG for 5 days and on Sat I could go home. I also was told I would be cured.I have found out a very large % are cured and walk and live a normal life.
I started therpy on the following monday 3 times a week. I was in a wheelchair. 4 months later I was walking. I had set aside my walker and cane.
I turned myself over to my God and said I cannot do this alone I gave my whole self and still do.
I cannot say how fast you will heal. (GBS GETTING BETTER SLOWLEY)Some of your healing may be fast. I was told to see myself as postive. My GBS everything. Every morning when I woke up I looked at my body and didn’t stop till I found something postive.
Bill in our family we know more about what we have than 60% of the doctors. Here you will find love and understanding and compassion. You will have support. All that has happen is you tripped and fell and now you have to work with others learning how to get back up.
I will close for now but read this site 2–4 times a day. there are some great people here and you will meet them very soon. Rest, smile. close your eyes . you have some work ahead of you. Your friend and GBS patient recovered(Steve)
AnonymousSeptember 24, 2008 at 2:02 pm
Bill, we all have a different story to tell. Everyone who goes through GBS comes out of it a different person. Keep things in perspective, one day at a time, it is a slow process but we’ve all learned lessons from our road to recovery. Your sister will find what is really important in life. She’ll have plenty of time to lay back and think about what was and what will be. Help her to realize everything we do is our choice. She can choose to face this thing head on and with that she’ll be able to accept the road ahead.
Many people make a full recovery, but those that do move on and don’t use these support sites so much. So just because many of us here are not fully recovered, it does not mean it isn’t possible.
Keep in touch with this forum and you’ll meet some pretty amazing people.
AnonymousSeptember 24, 2008 at 2:05 pm
She moved to Port Orange in May and came down with GBS at the end of June. Now in a nursing home in Winter Garden that handles respirators. She has a severe case as she still can’t breathe on her own yet, 12 weeks.
She can’t rotate her neck by herself. She can’t move her arms or fingers yet. We do passive therapy with each muscle and joint for her everyday along with the therapists who work with her.
She actually is in pretty good spirits for someone who has been stricken this long without gaining any control. She can speak now, with the balloon deflated, for periods of time.
But she really wants to known when she can expect to gain some control over her muscles so she can move around on her own. We try to encourage her and we tell her it can take a long time with hard work on her part also. But we think, at times, she may be one who doesn’t come out of it. We don’t tell her that though, because you just never really know.
AnonymousSeptember 24, 2008 at 5:46 pm
Does she have a computer or her husband??One thing you all are doing is gloom and doom. Remember I said postive. I refused to allow some people in my room because they come in looking like this is the end for me.
Ask her each visit what new thing can she do today.Be happy around her speak postive as she will get better. Not in her time or your time but at the right time and Gods time.
I always look for a reason for things happening in my life. nothing is by accident. and in time we see the reason. GBS made me compassiant, careing,giveing,loveing,and thankful. and what it felt like to be handy capped
I would like to mention I have healed and I am still here helping others. I also know many here that have healed and are here every day. This is my way of thanking the great spirit for his blessings and healing for me. Bill she is healing slowley and remember you and the family are healing with her. NEVER patronize her and praise her for every little thing she does BE POSTIVE THINK POSTIVE–(Steve)
AnonymousSeptember 24, 2008 at 6:09 pm
No No. We are very positive when around her. Like to tell jokes, and joke with her. In fact, I found our parents slide collection of about 1500 slides taken between 1948 and 1973. I bought a slide scanner and cataloged them by years, then bought a digital picture frame,10″, (suppose to be here tomorrow) and will put all those pictures on it. She love it.
With the exception of her being very scared about ever recovering, she actually is in very good spirits. She has her ups and downs.
AnonymousSeptember 24, 2008 at 10:28 pm
Dear Bill, Welcome. I’m so sorry to hear about your sister. I’m going to give you my time line but as it’s stated, each of us are unique in our recovery, some fast some slow, some fully some not. I was stricken with GBS on 6/11/07. I have the Miller Fisher variant, it started with my cranial nerves and went down, instead of feet upward. I was lucky enough not to be put on a ventilator. But I did lose just about everything else, couldn’t walk, talk, swallow. I was discharged from the rehab hospital 8/9/07, with a feeding tube, able to walk limited with a walker, limited use of my hands and arms and home therapy. The feeding tube came out 10/10/07 while in the hospital (again) for blood clots. I am now over a year out and it has been a struggle but I’m driving, my walk is still shaky but un-aided and I’ve been called a Chatty-Cathy, my speech is much improved but gets a little slurrry when tired. I am not 100% but that is my goal. I joined the YMCA in Feb. 2008, as my PT ran out and each day I go to the Y to get stronger. Somedays are better than others. I do get down sometimes but am thankful I am still here plugging along. I am glad your sister has a positive support group, it’s very important (and hard to do at times). Good Luck & best wishes!
AnonymousSeptember 24, 2008 at 10:38 pm
Hi Bill! Just wanted to pop in and say hi to you and to your family, especially your sister.
The question you are asking is what can she expect in terms of healing, and the problem is none of us can answer that. GBS is unique to each of us and we all respond differently.
I am one of the success stories. I had GBS 25 years ago. I was intubated for about 6 weeks, spent all that time in an ICU unit, then spent another couple weeks on the neuro ward before hitting the rehab center. I spent about 2 months in rehab before heading home. I should have probably stayed a bit longer but I had four small children at home (I was 29 and home was 2 hours away, so I did not get to see much of the kids during this period.) I had a lady come in for the first 6 weeks to help with the kids and house work etc. as I was not strong enough to do it. I live in a two story house so would crawl up the stairs and “bum” my way down!
Once home, I had my ups and downs. The first year was the hardest. I was weak and fell a couple times, thought I was relapsing but found I was just overdoing it. I was a stay at home mom but 4 years after GBS I went back to work full time. I still had some issues, like weakness in the great muscles of the body, deep muscle pain and pain with tingling in my feet as well as tingling in my hands. Over the years issues have arisen that I did not connect to GBS but am seeing now that they were directly related to it. The dr.s (GP’s) told me the pain in my feet was from arthritis, but we now know it was neuropathic in nature.
Over the last 3-4 years I have been experiencing some residuals and an increase in the discomfort of the ones I had. I have increased tingling and neuropathy pain in my feet. I have weird sensations going on all over my body at various rates and degrees, but I continue to work and live a full life. I deal with the residual issues as best I can. I come here every day that I can as I am learning more and more all the time and I have a better understanding and handle on what to do when stuff happens. A lot of us feel alone in our struggles as we look well on the outside but are in neuropathic pain on the inside and that is so hard to describe to anyone. I saw a neurologist for the first time in 25 years this past November. He is the one who immediately said that the pain in my feet was no where near arthritic pain in nature and that is why the treatment for arthritis had never helped. He put me on gabapentin andwhen I went on gabapentin, I felt a huge difference.
I have since discontinued it because of the side effects. They impair my ability to do my job. I am currently trying things like vitamins and supplements as well as using some natural supports to assist me.
This is getting long, but I wanted to share so that others can see that there is life beyond GBS. Even if at this point I get to the place where the neuropathic pain stops me from doing my work or living a “normal” life, I still consider that I have had 25 good years to enjoy life and I am not giving up now!
How this will turn out for your sister, none of us can say. What we can do is be here as she recuperates, offer our love and support, give her guidance and answer her questions. We are all like family, good, bad and otherwise! I have found that no matter what the issues, there has always been at least one person here who could help answer my question. Good luck to you and your sister. I will keep her in my prayers, and if you or she have any questions, I would be more than happy to answer them.
AnonymousSeptember 25, 2008 at 9:07 am
Welcome to the site. There are many people here to answer questions and offer support for you and your sister. I can’t answer the question regarding how long it will take. Everyone has a different story and multitudes of treatments. Advice that I will give is to keep a journal. You can record accomplishments and milestones of treatment. This comes in handy in many ways. It answers the “how long has it been questions” Its easier to identify changes but most importantly it is a way to recognize new accomplishments and how much progress really has been made. For me this was probably the best motivator. I could say, look last week I couldn’t move my foot and now I can lift it 6 inches off the bed…..Your idea of surrounding your sister with familiar things is great. My favorite item was a family collage that I had. I could look at it and say I want this back. Another thing I cherished as a patient was just everyday news from the family. I wanted and needed to know what was going on in the world and my family. I loved it when the kids or my husband would ask my opinion about what they should do. It made me still part of the family. Last but not least was my family’s attitude. They were always trying to find ways to make me do as much for myself as I could. Not to be mean, but to help in the rehab process. They would not do something for me once they knew I could do it which would frustrate me at times but I also understood what they were trying to do. Well this ended up a bit longer than planned, but I hope you find the support here that can help your family. Take care and keep us posted on your sister’s progress.
AnonymousSeptember 25, 2008 at 9:18 am
Hey Bill, JanB’s advice on keeping a journal is a good one! I did not start one and it’s hard to remember when certain things happened. When you take “one day at a time” one day gets finished and you start on another one, forgeting the day before. I was unable to write for months so it would be great if you or if you suggest it to your sister’s hub to start a journal. I know I’ve come a long way but it would be nice to see it in writing the day I could start doing this or that or even the not so good stuff too, when this or that test was done. And sometimes the docs want to know things and I just can’t remember when… Best wishes!
AnonymousSeptember 25, 2008 at 11:51 am
Sorry you family is going thru this.. My question is has she improved in muscle strength, range of motion, etc.. in any areas? Do they have any kindof treatment plan for her? Have the done any nerve conduction tests….?
I’m sure it can be frustrating, and everyone seems to heal at different rates… It sounds like hers is atypical presentation of gbs, but overall people do recover….. In two weeks, it will be one year since I was hospitalized with gbs, and it has pretty much taken over front and center in me and my families life.. The good news is I’m still recovering, and I think I’m on track for full recovery.. So sometimes things seem bleak, but our bodies heal, as well as emotional wounds… hang in there…dean
AnonymousSeptember 25, 2008 at 12:05 pm
It’s been about 12 weeks and she has not had any muscle improvement or movement in her affected areas. That being her neck, arms, hands, fingers. She can move her legs and feet, which she never lost. She can shrug her shoulders. She can talk and swallow soft food. But she still needs minimum pressure help from the respirator. In the first two weeks, Fla Hospital did both types of treatments on her, so it’s been about 8 or 9 weeks now since treatments.
AnonymousSeptember 25, 2008 at 12:19 pm
I was mostly immobile (paralyzed) from my neck down.. I could however lift my arms and move fingers with very little strength… Some things came back real quick, while intricate body functions I had to redevelop muscle memory…Even going to the bathroom had to relearn!
I think a lot depends on how much nerve damage, her motivation, health, and lots of prayer.. 🙂 On the other hand, it sounds like she has muscle control over a pretty good portion of her body… Sometimes, I equated my rehabilitation to almost a stroke patient.. (my mom)…. I remember back then how to celebrate the little victories, and soon the big picture comes into play… Make sure to explore all options….deano
AnonymousSeptember 26, 2008 at 3:58 am
Bill, your sister is so lucky to have your support–it is paramount to her recovery. My recovery time line may give her hope. I was 43 when I went through something similar as your sister. I was diagnosed with GBS on 4/23/06 and was completely paralyzed and on a respirator by June. I was admitted to a Select hospital in August mostly for respiratory issues. I received passive physical therapy there which seemed to have no effect. However, after a few weeks, my fingers started to move and eventually I could flip my hand over. I was admitted to a rehab hospital in September 2006 and received more intensive therapy there. I came home on 11/2/06 and still could not feed, bathe, or clothe or even go to the bathroom by myself. Today I am living on my own with little assistance. I am still in a wheelchair, but can use a walker for short distances. I work out at the gym and pool three times a week. I will be assessed for driving soon and am looking for part time work. Early on, I never dreamed I could get this far in recovery. My life is not easy–at times I still cry like a baby out of frustration. I was like your sister once and I have come so far. What seems impossible [B]is possible[/B]. Please tell her not to give up hope.
AnonymousSeptember 26, 2008 at 11:04 am
My sister cannot use the computer in her condition, her husband has rented an efficency apt next door with absolute basics, which means no computer as they only have a desktop at home, which is about 100 miles away from where she is. So I print these answers and information out and snail mail it down to her. It is very helpful to maintaining her spirits in the positive. Thank you all, and keep it coming!!!!!!:)
September 26, 2008 at 12:21 pm
Is there any chance you could skip the snail mail and ask the front desk of the nursing home if you could fax the info? I bet they are responsinve to people who are trying to help and make their life easier. I bet her husband helps out alot and that makes it easier on the nursing home nurses. I am sure they would oblige the recieving of a fax. Good luck.
Dawn Kevies mom
AnonymousJanuary 15, 2009 at 10:59 am
She is coming home tomorrow. Her husband and home care services will be taking care of her. She is still on the Respirator, but on CPap when awake, and SMIV when sleeping.
She still has no control from the neck down, but says she feels pain when I touch her hands and/or feet. I told her that I was told by an ICU nurse that the first “sense” to show signs of restoration, is pain.
I installed a 10 circuit Transfer switch for the ‘clean power’ 8K Generator to ensure back-up power for whatever equipment is needed to support her in case of a power outage in Fla.
I have been staying at her house since Dec to get it ready for her arrival home. Even have a 2 X 6 Welcome Home Banner outside so when she arrives, she will see it before going inside. (It’s been 7 months since she has been to her new house. I have lived in her house longer than she has.)
AnonymousJanuary 15, 2009 at 11:14 am
Hi Bill! Bless her heart! She sure has had a very rough time of this but am glad she is coming home. There is no place like home and hopefully her being in her own home might just make her feel better. You tell her that when she can start doing more things including a few minutes on a computer that she has a whole family of friends waiting for her.
Perhaps even reading the forum to hear with our letters to her will give her encourgement a strentgh to keep fighting her battle. I will keep her in my prayers and thoughts! Good luck and tell her I am praying for her to get well!
AnonymousJanuary 15, 2009 at 1:16 pm
I know from your earlier post they did both type of treatments on your sister.
Did she get more treatments since then, if so, what and how often did she get them?
Tommorow will be a happy day for your sister, her husband and family.
Your a great brother to your sister.
I will be praying for continued recovery for your sister.
Prayers and blessings
AnonymousFebruary 4, 2010 at 11:52 pm
I am interested in recovery rates too. My 64 year old friend has been in hospital for 5 months and can only blink for the past 3.5 months. She is on a respirator. The Drs say there will be severe disability because the nerve studies had no response. They also said we will know for sure in 6 – 12 months. She has no other health problems. Wishing you two the best.
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