Hedley LaMarr

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  • March 5, 2011 at 8:06 am

    You have received lots of good advice here from people who have been through this rotten illness. He belonged in hospital for starters with GBS (AIDP). This illness gets worse before it gets better and he must be kept under close observation. I was in intensive care for the first three weeks because they have to watch for complications, like respiratory failure. Even with close observation I got pneumonia after three weeks which laid me up another nine weeks breathing with a ventilator. BUT EVERYONE IS DIFFERENT. My experience is mine alone and I was 11 years older than your husband when I got it. The treatment I received was IVIG and the Plasmapheresis, but the illness rolled over the treatment like a steamroller. There is one thing you must adjust to quickly and that is the fact that there is no quick fix for this illness. Some recover quicker than others.There are mild, ,medium and severe cases of this illness and I was the last one. I pray he is the first one. Some other thoughts:
    1. Start asking about a good neurologist. Usually, fellow doctors know the best names.
    2. When dealing with people treating your husband, ask if they have treated GBS in the past?
    3. Do not allow hm to attempt to get up unassisted to go to the bathroom, etc. Never.
    4. Take things a day at a time.
    5. Call the GBS Foundation and get the name of a former patient liaison in your area who will act as support for you and your husband. This person will visit your husband as well.
    6. Be strong, because the experience for all of us shows that with time you get better – some 70 -80 % make full recovery.
    7. Start reviewing your insurance matters. Find out how many rehab days are covered.
    8. Carry a pad and pen always for notes you want to review later on. Get the number of the nursing station to check on him while you are away.
    9. Establish a relationship with the Social Services Department. Get the name and number of that person as your contact and advisor on different matters like medical coverage, rehab facilities with a good rating, etc.
    10. Pace yourself and don’t burn yourself out. A day at a time.
    11. Don’t be frightened at the condition in the beginning weeks. The illness runs its initial damage for 3 weeks or so. Everyone is different as to the extent of damage. I could not open the flap of a cell phone and was only able to move a thumb.
    12. Most caregivers are good. But watch them all and complain if you see something not right.
    13. Read the GBS handbook on this illness – call for it. You will see that recovery can be between 6 months to two years or more as stated in that handbook.
    14. Join GBS and get the back issues of the newsletters – my own story is in the DEC 09 issue. Be strong, especially in front of him.

    February 15, 2011 at 5:56 am

    Harry, Tina, Adnan: Thank you for sharing. Sometimes I feel isolated when it comes to knowledge about my symptoms. Harry, I have problems with declines on the street and it is too dangerous for me with just the cane because I live on a San Francisco type hill which is not too severe but yet a risk. So if I travel alone I leave the house with the walker for maximum safety.
    Tina, thank you for sharing. I wear AFO’s on both legs because of severe drop foot. This is the most distressing part of the illness. It gets me down. I lay awake wondering if they will ever come back or if I will have them the rest of my life.
    Adnan, thank you also….I take Gabapentin although I have no real pain. I went down to just 800 mg per day from 2400mg and felt no different. My doctor allowed me to raise it to 1800 per day. I am experimenting. I wanted to go down to zero and stop, but while I’m still doing physical therapy, I decided to continue because I do sometimes get pain, but it’s rare. I have no side effects from the medicine to speak of. Some day I will wean off altogether to see what happens.

    January 11, 2011 at 12:32 pm

    I found that having a 22 year old french live in maid very helpful. 🙂

    January 11, 2011 at 9:46 am

    Angry is OK to a degree for venting and telling others to get lost, but it’s no good for the immune system. As finances go, Medicaid will have to be your fallback position. Each state has different criteria, but you will be covered when your resources are gone. Then everything else kicks in like food stamps, etc., and you end up getting things that people with regular insurance do not get. If you’re religious, have a few chats to get things off your chest. I’m still angry, but what good does it do me? So I try to get around it. When you’re alone it’s hard. I learned one thing: you are in this fight alone whether you have a support system or not.

    December 20, 2010 at 12:00 pm

    I had some real bad ones – but was too weak to go after them. And they know that! When I got stronger, the new abusers were decimated by me!

    December 4, 2010 at 11:08 am

    Sharon: Last to heel are outer extremeties – source of info, my neurologist….please ask your doctor.
    I have never been told that stem cells are a treatment for GBS or surgery for drop foot.. But I will ask. Please google drop foot surgery for Guillain Barre and see what you get. I will ask my Dr. about both.

    November 18, 2010 at 8:04 am

    I was on a vent for 9 weeks and weening off takes time. My physical therapy durng that time was bedside. But this business of misdiagnosis is disturbing. Does this patient have an official guardian to act in his behalf? If not get one established. Clear up this diagnosis thing first.
    Now, here is the part you need to understand. THIS IS LONG TERM. I was in hospital 70 days with vent, pneumonia, and every other damn thing. After that I spent 50 weeks in rehab. Start speaking with the Medicaid Coordinator at the facility because this illness will probably exceed his rehab days under his insurance. As friends, maintain his personal life, bills, his residence, etc.

    November 13, 2010 at 11:37 am

    If it continues, I would see a Otologist or a Neurotologist for further review. There are various causes and you should review them for your own education on Wikipedia.

    November 3, 2010 at 8:20 am

    Well, that convinces me that I’m correct about the cold. I have to decide now between a snuggy or a rubenesque woman. Thank you.

    October 21, 2010 at 11:24 am

    It sounds like your mother is being discharged from the nursing home too early. Insurance rehabilitation days may have been maximized. I know that Medicare only covers 100 days. If she is not a senior, then you are stuck with her private insurer. The question is: can she get proper care at home? If not, she should have stayed put. But, you would be faced with paying that facility privately and that could cost a bunch. Medicaid is an option, but you would have to speak to the nursing home Medicaid Coordinator to see what assistance you can get. Medicaid is a long application process but in some states they will pay after your resources run out. You may also need to consult with an Eldercare attorney to explore your options and protect her resources to the best extent possible.
    Second question: finding a doctor. See if your most highly rated hospital has a neurology center. Ask your other physicians for the best known neuro doctors in your area. You have to dig hard.
    When you argue the case with your insurer be sure to point out that GBS has a long recovery period in many cases ranging from 6 months to two years or more. I hope this helps.

    October 17, 2010 at 12:27 pm

    I had immediate treatment of IVIG, followed by Plasmapheresis and it did not matter. The attack went right over both treatments like a steamroller. But that is the treatment available right now. Maybe it helps, but it is NOT apparent at the time. You have to wait this out. Gear down and have patience because this can be a long term illness. If you are lucky, you will get out of this sooner than later.

    September 29, 2010 at 8:15 am

    Justin: The hospital may have communication tools: handheld texting boards, communication cards, etc., so you don’t have to rely on just reading lips. Bring a pad and pen to the bedside for her also. She is frightened by this vent stuff. I was vented 9 weeks with a tracheostomy as well. No voice, no fun, and scary.
    Ask her about her needs frequently. Ask the social worker or the speech pathologist for the tools I recommended above. You can only provide love and support at this time. The medical stuff is up to them. Stay on top of them and get an update every time you visit. See the doctor who is in charge of her case. Make sure her lungs are clear. I was vented because of pneumonia.
    Time is the enemy: laying there and staring at the ceiling. Get her a headset for music is she wants one. Massage her feet to distract her. Be there as much as you can. Maybe her close friends can be there too. Don’t all be there at once. She may not want anyone: so ask her.
    See if you can get a former GBS patient to visit her. Call this foundation or email them for a connection.
    Stay strong – this will pass in time. PATIENCE is the key. Time and patience.

    September 27, 2010 at 8:09 am

    Good advice from Dawn. But each case is different. For instance, I am single and do not own a home. But forget me, the elder care attorney may be able to lessen the blow. Consult one. I considered a trust but was told that I could not regain personal control once I was better, so that was out. I found my elder care attorney through the rehab place. They offered three names and I picked the one from hell. He wanted $750.00 for one hour to discuss my options. And he wanted it before we spoke. In the end, I did get some help from the Medicaid people, but they went after all the cash assets I had first. When that was gone they subsidized the balance of payments minus my net monthly income for the months of my confinement.
    Back to the reason for the post: Check the number of rehab days you have on your insurance policy and think about what you will do when they run out. I could have switched insurance carriers and gotten another 100 days but my rehab place did not take that carrier. Insult to injury.
    Did you know that Medicare will give you another 100 days if you are out of the facility for 90 days. But where would you go – you need a family to take care of you.
    Thanks Dawn, for the eldercare attorney advice. This is of great importance. Lots of people should be thinking about this before they get sick. What happens if I get sick? Also, consult with the social worker at the facility, along with the Medicaid Coordinator.
    I wish this post could get to healthy people before they get GBS.

    September 25, 2010 at 8:50 am

    It took me 50 weeks to leave the rehab facility using a walker. I am 19 months into the illness wearing AFO’s. My Neuro says that a patient sometimes hits a flatline and stays that way for a while before the upward curve begins again. Now it is a fact that some patients (20%) never achieve FULL recovery. There is no way around that fact. Remember this question started by asking about FULL recovery. I have not given up hope and will not; but I am a realist as well. One day I dreamt that I was well and started to get off the bed, but stopped when my feet touched the floor. I wrote about my saga in the December 09 issue of the newletter on page 4. Each day I wonder if I will achieve full recovery or fall into that statistical group of those with deficits of one kind or another. As I wrote in this post before, I met two fully recovered people personally: one with an 8 month episode, and the other with a 2.9 year episode. They walked unassisted. I got this illness at 67 years old, healthy and playing ternnis weekly. Go figure. Until someone tells me “this is the best you’ll ever be” I will continue the good fight. I came back from full quad paralyzed within seven days to using a walker. When I get down, I look over my shoulder and see how far I have come. And that gives me strength to keep going. I had a one foot tall sign in my rehab room on the wall. It had only one word: PATIENCE. I thank you all for your input.

    September 11, 2010 at 9:23 am

    The insurance company is ignorant about the nature of GBS, along with others. It seems the only thing that has plateaued is their brain. Your mother needs professional rehab. Perhaps you can get a Neurologist to get her into rehab. When the insurance money runs out her case will be one for Medicaid. I did not stand for 7 months and it was for a second. I had a year of therapy and went home using a walker. I still use it. Why couldn’t I stand? Because my quad muscles (tops of the thighs) were weak. They had to be built up using a special exercise machine, along with a therapist working the others every day. We are not trained to do this work. Do not let the insurance people dictate. Go to a rehab facility that accepts Medicaid. I paid through the nose from my savings, but then Medicaid assisted under a 6 month program called Chronic Care Nursing Home Assistance. Each state is different, so you will have to find out what is available. The Rehab Nursing Facility has a Medicaid Coordinator and you should talk with them. No matter how loving a family is, they cannot provide professional rehab. If you cannot do any of the above, you will have to be trained by a pro to provide the exercises needed to get her to stand. By the way, we are all different in healing. I cannot wiggle my toes after 19 months. But then again, I never did much wiggling when I was healthy! Remember to tell these insurance idiots that healing from GBS takes 6 months to two years OR MORE. If necessary, you can get a letter from a Neurologist or give them the excerpt from the GBS Handbook. If you choose to fight the insurance people, you will need this support. Meanwhile, take one day at a time. Care for yourself as well.