Scared at 82

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This topic contains 15 replies, has 8 voices, and was last updated by  John Moore 6 days, 15 hours ago.

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  • #111399

    emg33
    Member

    I’m so glad to have found this website. My 82 year old mother contracted GBS just 2 months ago. She was supposed to leave for Cuba but as fate had it, she missed her flight by mistake. In the days that followed, she developed pain in her flank and felt like she was walking on rubber shoes. We got her into a hospital right away and after many tests, a neurologist finally diagnosed her with GBS. As a precaution, she was admitted to a neurological ward for close watch and fortunately she didn’t end up on a ventilator. She has been in General Rehab in a hospital for over a month now and is slowly getting the use of her legs back. The worst part about this syndrome is that so little is known about it by the hospital staff. She’s scared and just wants to talk to someone who also has GBS to tell her she’s not the only one. Her hands are actually getting worse and that is so scary for her. Is anyone out there who is elderly and has made a decent recovery? Mom tries so hard to keep it together but she’s broken down a few times. I wish I had a crystal ball or a magician who could trade my place with her’s. Thanks for any advice.

    #111400

    Jim-LA
    Participant

    I had a similar experience with the rarity of GBS in 2010. I was taken to the ER, spent all day with no results and went home. Overnight I fell and broke my toe in the process, but I couldn’t feel the pain because GBS numbness had already set into my foot. I spent most of the next day back in the ER, this time they diagnosed me with GBS.

    I was admitted to the ICU and started on IVIg the next day. Things got worse even after 7 days of IVIg.

    If I knew then what I know now, I would have started with 3 days of Plasma Exchange followed by a week of IVIg. This, I believe, would have stopped some of the permanent nerve damage I suffer today.

    There are many treatments available today, what has your mom been given?

    #111401

    emg33
    Member

    Thanks Jim-LA. My mom had one week of IVIG and now she just gets Gabapentin and Tylenol 3 as needed. There just doesn’t seem to be any doctors who know enough about this. Tomorrow I’m going to ask for another Neuro consult. They want her out of the hospital and at home.

    #111402

    Jim-LA
    Participant

    EMG,

    Testing is important to determine if the disease is still active. Nerve Conduction/Velocity and Spinal Fluid tests are often used. Treatment usually follows after the test results are understood.

    Please read the following for some valuable info, especially the section about diagnosis:
    http://30g7el1b4b1n28kgpr414nuu.wpengine.netdna-cdn.com/wp-content/uploads/2012/01/OverviewENG.pdf

    If you can share your city, we may be able to suggest some doctors or treatment centers near you.

    Jim

    #111412

    GaryG
    Participant

    My husband is 76 and 9 months ago was diagnosed with GBS. So your mother has a better idea of the road we have traveled, I am sharing our story. He actually had symptoms for several weeks prior to diagnosis, we just did not recognize them as anything serious until his feet (went to dr. but everything checked out fine), then feet and hands began to tingle. From the onset of the tingling, within 5 days he was almost unable to stand unassisted at which time we were directed to the top neurological hospital in our city. Diagnosis was made within 6 hours. Lumbar puncture was then done to confirm. He was given plasmapherisis for 5 days, then 5 days if IVIG. Even though he responded well to those treatments initially, he needed to be intubated/on a ventilator for 5 days then it was successfully removed. He never lost his upper body mobility, but lost the use of his legs and the nerves in his face/neck were completely involved so he lost the ability to speak/swallow. He was in ICU for 6 weeks, in the hospital for another month before going to acute rehab for 4-5 hours of intense therapies a day. There he received a motorized wheelchair to enable him to be independent in getting to therapies and able to get out of the room! By the time he went to acute rehab, he was able to speak and they continued speech therapy for him to reach a point of swallowing and being able to eat. After 6 weeks there, he went to a step-down rehab to continue speech therapy and OT/ PT for 2 months, then home where PT continued in home for 2 months before starting out-patient PT at a therapy facility. By the time he came home he was walking with a walker, very slowly and not very far, but able to walk. He used the motorized wheelchair for about a month at home to go room to room to conserve energy for his PT and increasing his stamina to stand and walk. At the end of the 2 months at home, he was able to walk with a cane and the wheelchair was out of the house permanently. He has two more PT sessions, then he will begin going to the gym and working out at home on his own. He is much stronger and able to do everything on his own except tie his shoes!! I still assist him when putting on slacks/shorts simply because it is easier for him. His feet and finger tips still tingle…sometimes his feet are painful to stand on, but it comes and goes. His hands are not weak but they have begun to itch!!! That topic I will ask about on this forum. The only meds he is on is Gabapentin and Vitamin B. I think a good neurologist is crucial to diagnosis and treatments. The neurologists in our city told us GBS is not rare, but uncommon….it has been amazing how many people in our area have either had GBS, had a family member/or friend with it, or knew of someone else with a family member recovering. There were actually 2 other GBS patients in the same neurological hospital when my husband was there. We were told nerves heal slowly and the older we are, the longer it takes. So depending on how severe a case the patient has (my husband was quite serious) plays a part in how long it takes for the nerves to come back. Your mother is not alone, but it is a very difficult….especially when the staff does not know what they are dealing with. Neurological things are not like other ailments that you just “get better”. It takes time and patient and I would think that at her age, she needs to be where she gets the proper care and therapy to strengthen her legs so she can eventually be mobile again….safely. You do know that you can appeal the decision to send her home if you see that it is not the right thing to do. You are her advocate, so speak up and question anything you need an answer to. I agree with Jim-LA that if you can share where you are located, perhaps we can help direct you to a place with the knowledge that will help her.

    #111420

    emg33
    Member

    Thank you both for your stories and help. I have shared your messages with my mom and she was so relieved to know that there is hope. We have requested a neuro referral and will go from there. Tomorrow a team is taking my mom home to assess her ability to be on her own. This means she will have all the equipment and homecare help required to function at home with physio appointments nearby. The next day we are meeting with the hospital team to discuss everything and if they feel she is ready, we are going to appeal the decision. She’s not ready. She cannot hold a phone to call 911 if something happened. Keeping patients in hospital is big money and the urgency to get sick people discharged asap all boils down to saving money.
    You are so right about GBS being uncommon, not rare. It amazes me how many people know someone who has had it.
    Your advice is very much appreciated. Thank you for taking the time to write me.
    We live just outside Vancouver, British Columbia.
    Heidi

    #111482

    Marcel
    Participant

    Hi Heidi,
    I wonder how your mom is doing now. I have only just joined this forum, and seeing how my mom has been in the hospital since december 1st, I suspect your mom may still be there as well.
    My mom spent a total of 152 days in ICU, and just went to rehab on May 3rd. However, due to unexpected sudden lowering of consciousness and drops in heartrate and oxygen, she is now back in the hospital (not ICU) for tests, before they let her go back to rehab.
    There is a lot of information about GBS on the internet; google it! One suggestion I got from an ICU nurse who also teaches, is a video made by Holly Gerlach. Granted, she is much younger than our moms (mine is 72), but the video shows remarkably recovery and is inspirational nonetheless: https://hollygerlach.com/my-youtube-video/
    She also wrote a book about her experience.
    I just ordered another book as well, written by professional (one of whom had GBS himself) and describing the process in detail: check out: Guillain-Barré Syndrome – from diagnosis to recovery by Dr Gareth J. Parry and Joel S. Steinberg MD PhD. It is explained in laymen’s terms.

    By the way: my sister is an occupational therapist and hand therapist, and actually had an 81 year old patient who had gotten GBS when he was 74 – he could walk and do almost everything 🙂

    Stay positive!!

    #111485

    GH
    Participant

    Parry and Steinberg is the book which explains GBS to laymen. It is recommended reading to anyone who wants to understand this disorder.

    #111505

    emg33
    Member

    Hi Marcel,
    Thank you for sharing your mom’s story and for the information on the book. Mine is coming in the mail soon. I hadn’t checked this site for a while and when I read my mom your email, she was again so happy and shocked that someone would write! It has been 5 months now since her diagnosis and I’m so happy to report that she is at finally at home. Her stay in the general rehab ward at the hospital came to a quick end when her team decided that future care for her would be better in a convalescent care facility or at home. We were very surprised that going home was even an option. They gave her a weekend pass and she was so thrilled to be in her own home. It was quite an ordeal setting her apartment up with the necessary equipment (sit-to-stand lift, hospital bed, wheelchair, commode, sliding board) but our Red Cross was wonderful and delivered everything and set it up. She has 5 home-care visits a day to help with her toilet needs, bathing and short tasks. This is all made available through our Canadian Healthcare. She has also started light physio. We have her outfitted with LifeLine (“I’ve fallen and I can’t get up…”) When she was in the hospital just a month ago, she couldn’t stand up or use her hands very well. Now she can stand, pivot and sit, brush her teeth, use utensils and manage the tv remote and phone. It has been a slow but steady progress for her and in her case, being in her own home has helped her emotionally. She’s so happy now and has learned to accept how GBS changed her life. When she accomplishes a new feat, she’s like a child who has just learned to ride a bike. It’s truly heart-warming. I have learned so much on this ride, as has my whole family. I may have to change the name from “Scared at 82″ to Thriving at 83”. It’s her birthday tomorrow and we’ll have so much to celebrate.
    I hope your mother is also seeing some positive changes. How is she doing? She’s lucky to have you.
    Take care,
    Heidi

    #111727

    Marcel
    Participant

    Hi Heidi,
    thank you for your reply, so good to hear your mom is doing well. My mom is slowly improving. Last week they began trying to ween her off of the ventilator, and this week, she was able to eat for the first time in 8.5 months. She is moving to a nursing home on Tuesday. She can lift her hands to eye height, and can wiggle her toes, but no fine motor skills as yet. Keeping our fingers crossed.
    Marcel

    #116116

    Corrina Hollister
    Participant

    Hi,

    My mom was just diagnosed with gbs at 83 years old. Any advice on dealing with this? She is on day three of the IVGG treatment. Day two she was doing better but then day three worse again. Is this typical? Looks like there are side effects of the treatment too. I would appreciate any insights or advice on navigating this nightmare with a senior. She had been very healthy and active up to this other then some high bp due to hypertension.

    #116117

    GaryG
    Participant

    Iam sorry to hear about your mom’s diagnosis, but there is light at the end of the tunnel.
    My first question is do you live where you have a good neurological group? We felt fortunate that we had Barrows Neurological right here.

    My husband was diagnosed at age 76 with GBS…3 years ago. (You will see my post from April 4. 2016) He was an active, healthy Marine who had no health issues other than slight high blood pressure. For right now I will spare the details of the onset of the GBS, but he had a very severe case and not only was paralyzed, but was on a ventilator for a more than a week. Today he is walking, talking, taking care of himself once again with the only residual being his feet tingle ALL the time. And by the way, his blood pressure is completely normal with no meds!

    Plasmapherisis is the treatment that was used initially. It is sort of like dialysis for kidney failure except this removes the tainted plasma and clean plasma is put back in. There were no side effects from this—-though it did make him very cold for a little bit. Warm blankets took care of that! He had the plasmapherisis for 5 days, then the IVIG for 5 days. There was discussion to do two more days of the plasmapherisis…hind sight tells me that it could have been the right thing to do. I say this because he was getting better and then suddenly could not breath (the GBS hit his diaphragm/lungs) and at that point he was intubated and then was put on the ventilator.

    Again, the good news: going from being totally paralyzed, unable to breathe, eat, speak, close his eyes, etc. to be 95% normal…..well life is more than good.

    I do know that studies/research (Stage 2 trials) are being done using Eculizumab, but I do not believe it is approved at this point. I would check it out if we were on the front end of this diagnosis. Again, plasmapherisis……I would find a doctor who would get this started immediately.

    The second part of GBS recovery once the person is out of the danger zone and able to move at any level…is to do the physical therapies. Whatever is asked of the patient, regardless of how difficult or painful must be done. That mentality, doing whatever it takes, is what got my husband where he is today. It was grueling for him and for me to watch, but it certainly paid off.
    He still says that he never once thought about not pushing through to get where he wanted to be.

    Please stay in touch with us regarding your mother’s condition. We will pray for both of you and her doctors. Tell her that she will recover…..but as all our doctors told us over and over, Time and Patience were going to be our friends.
    Regards,
    Bev

    #116118

    Marcel
    Participant

    Hi Corrina,
    so sorry to hear about your mom. I wish you all the strength in the world. I honestly don’t know what ‘typical’ is, as what I read online at the time seemed to show the severity was different for everyone – I hope your mom pulls through.
    As for the point you are at now – yes, especially during the first month, there can be many ups and downs. Heartrate and bloodpressure can fluctuate wildly at times, requiring meds to stabilise. My mom, who got a very severe case of GBS at age 72, was in a coma for a week, and at one point got to be so bad she literally couldn’t be any worse. But then she woke up, and continued to improve. It is a very scary period of time and I know you must be scared to lose her. We were.
    After about a month, normally, patients reach a plateau, and from that point on, there is a lot of work to be done to recover as best she can. But the rollercoaster during the first month is the worst. Hang in there..

    #116119

    Corrina Hollister
    Participant

    Thanks so much for the encouraging words! She has her last day of IGVV treatment tomorrow. She has had a few good days and a few bad days since it started. We are very lucky she doesn’t have paralysis. She is very weak and has numbness in her hands, arms, feet, legs, and sometimes face. She also has speech & swallowing issues. Her breathing is getting a little more difficult so I’m hoping that won’t get worse. My biggest concern right now is the random blood pressure crashes and of course the fact that she is 83. I wish they lived in a more populated area where there were more neurologists. They live in Twin Falls, Idaho and there aren’t enough neurologists here. I tried everything to get her into one when I got her a few weeks ago before she was diagnosed. I kept hitting brick walls and they said they were all booked until January. Finally after calling 911 and hospitalization for almost a week the hospitalist finally called a neurologist. I so appreciate all of the support!

    #116282

    siu go
    Participant

    Hi Corina,
    Hope your mom doing good now.my mom just get the 4’th cidp last month . And now she still can not walk . I’m wondering how long usually conditions back to normal after get this cidp.
    Her last cidp is 2003 , i remember the progress is not as slow as last time . She is 79 by the way .

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