Hedley LaMarr
Your Replies
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October 2, 2011 at 10:33 am
Kevin…inspiration goes so far for me. I am glad if it helps you. There is a subject post here called WHAT’S GOING WELL which has been read by 7,298 people as of today. There are 156 responses about what is going well – a mere one percent. Maybe that’s the place to post progress notes. I never read it because it depresses me. I am 32 months into this illness with severe deficits of two dropped feet, braces, and using a walker or cane to go out. In the beginning, I read these notes thinking wow – that’s going to be me – only to be let down. I found out that you can’t get better by reading anyone else’s success story or any other inspiration. Full recovery lies elsewhere.
September 28, 2011 at 8:44 pmWhile nobody begrudges your fabulous recovery, there are some sensitivities you may want to consider. Not everybody has your experience and many suffer from deficits they may not have overcome or may never. The overwhelming details of your success may depress others. Did you think of that? They all want to be like you, but they may never be. Think of that.
September 25, 2011 at 4:34 pmFor those with balance issues, please note the following: My balance was improved to the point where I can walk unassisted room to room and with a cane. A machine helped me, along with a therapist who knew how to use it. The machine is called the Balance Master. Most large rehab places and hospitals of some reputation have them. It took a few months to get my balance back, but it was worth it. FYI.
September 21, 2011 at 10:21 amIt was good to read how humor helps coping with this illness. I have just started using some, but my humor is only meant to be facetious in nature. I hate this illness. It stole my life as I knew it, wiped out half my savings (Medicare only pays 100 days of rehab), and nearly killed me. And I spent 14 months both in hospital and rehab. Aside from that, everything is peachy keen. (See what I mean about the humor?) So forgive me if I cannot connect to the sunny side of life. I’m two and 1/2 years into this illness and my lower legs and feet still suffer from paresthesia (numbness and tingling like legs that fall asleep but never come back down to normal) and I have a slight tremor in my eating hand. There is no medication for these things. I know that 80% of patients make full recoveries, but I am pessimistic about my own case which has gone past two years. So I decided to just stop thinking about full recovery and just live day to day. This was such a relief. I realized that thinking about this every day allows the illness to victimize you twice. I wish I could take on a brighter side, but I cannot. It’s hard, when you lose your independence to do the simple things you always did before this illness. The other day I called the handyman to change a ceiling light bulb. It broke my heart. It took 30 months to make my first joke when my brother asked where I was going the next day (I use a cane or walker on the streets). I gave him a one word answer: BOWLING……he paused and then laughed. But in my mind it was facetious. Take care folks.
August 9, 2011 at 9:18 pmThanks folks, but nobody answered the question. (Are some nerves beyond repair or obliterated if you like.) And as far as 1mm per day for healing of nerves, my doctor said that was much too generous, its slower than that. Who knows what is correct, too many contradictions. My fault for asking a medical question. I’ll never do that again. I’m sure there is a witch doctor somewhere who knows more than these doctors about GBS. Nature will tell the tale. There is no med for nerve restoration, otherwise we’d all be someplace other than here on this forum. If I getter better fine, if not, that’s fine too. But I’m sick of this merry go round. The illness remains an enigma. No more posting for me. Good luck to all.
August 2, 2011 at 6:03 amI bought a set of soft braces from TheBraceShop.com. They are called the Ossur Foot Up brace. I just started using them in therapy. They hold the foot up. One piece goes around the ankle above the bones over your sock. The other goes around the arch which has a strap that you pull up to snap into the ankle part. There is another way to use them with laced shoes which comes with the purchase. Worth a look anyway. They were $278.00 and insurance does not cover them as medical device under Medicare. They have a return policy but they deduct 15 % for stocking fee.
P.S. Thanks for the feedback on drop foot. I’ll ask my doctor if he has heard of recovery from drop foot. We are in a vey special club that nobody can really understand except us. God bless.July 31, 2011 at 8:03 amJessica…….you are walking w/out a cane which is good. And you do not have dropped feet or wear braces to hold them up. That is GOOD. Get off your feet when the numbness gets bad. Get into a lounge chair to elevate the legs level to the floor. A year from now you will be better than today. Not much is known about GBS. What they know collectively can fit in a thimble and that would still leave room for my braces. KEEP YOUR CHIN UP.
July 25, 2011 at 8:07 amThanks for the answer guys. The GBS handbook on the illness says “6 months to two years or more” when it comes to recovery. I verified that with two neurologists as true. However, not everyone makes a full recovery. Maybe 80% if you push it. The rest are left with deficits (fiscal word seems strange) of some kind. I am approaching 2 1/2 years next month and have two dropped feet, wear braces and walk with a cane. But I got hit with this at 67 years old. I was on great shape when I got it. I’m not whining, but if I knew I was going to live forever, this would really **** me off. Thanks again guys, you’re the best.
July 3, 2011 at 4:47 pmYou will have to ask your doctor what factors led him to alter the diagnosis. You need to get a clear answer as to what the distinctions are between AIDP and CIDP. AIDP (GBS) presents with a rapid set of symptoms and a spinal tap is conducted to confirm the diagnosis at the time of initial diagnostic workup. Did your spouse receive a spinal tap? I was aggressively treated within 48 hours of onset. In seven days I was totally paralyzed. Again, ask your doctor to explain why he has has moved to CIDP. Do downturns or regression backwards always lead to redefining the illness? It is my understanding that the GBS patient runs a steady but slow upward line of improvement even though they may plateau for awhile. Again, it is my understanding that the CIDP patient does not present and incur a rapid loss of function. Your doctor is highly touted, but nobody has a good handle on this illness. All we can do is try to understand a little at a time. May you have good luck.
June 19, 2011 at 8:45 am“Patience” was the word I had posted on the wall in 5 inch bold type front of my bed in rehab. At 8 months into GBS I was being fed by others, could not hold anything, write, open the cell phone cover, etc. Gear everything downward, manage your expectations, and adjust to the pace of slow recovery. It took 14 months for me to return home and function by myself. Easy does it……. he will get tired easily…….when he does…….stop everything. Everyone here knows the phrase for GBS is “Getting Better Slowly.”
May 29, 2011 at 7:48 amPar for the course. I don’t know where he is but you have to make sure they monitor all his vital functions. After IVIG, I received Plasmapheresis – ask them about that treatment. Anyone involved with this illness soon finds out that you are in this for the long haul: 6 months to two years or more. PATIENCE is the key. It was my hardest challenge. There are mild, medium, and severe cases. Let’s hope he is the first one.
May 19, 2011 at 7:29 amI had twitching and then major leg jerking. While sitting in a wheel chair I remember my legs flying upward like a jack in the box. Welcome to club twitch. We’re here for you. Be well.
April 14, 2011 at 9:37 amSynthia: Don’t feel any guilt about being angry. You have a right to be angry. But do not let it hang around because it’s no good for your immune system. Don’t look back, just look forward. Focus on making progress. Continue your therapy as an outpatient if you can to stay in shape. Rest is important because there is only so much gas in the tank each day for GBS patients. Limit your activity and try to match it to your strength that day. You have friends here who know what you are going through. Take one day at a time. Today, I am going out to a doctor’s appointment. It will take me over an hour to get ready when I used to get out the door in fifteen minutes before. I hate this illness, but I will not let it defeat me. Keep your chin up.
March 18, 2011 at 7:49 amAll these words to describe discomfort. Yesterday, I had to get off my feet and get into a lounge chair for an hour to get some relief. The Neurontin does nothing for this condition. I will probably ween off them. My doctor stares at me when I describe the following to him.
I tell him this: “Remember when your leg fell asleep? You had numbness and tingling. He nods yes. Well, “this is the way I feel all the time,” I said. He stares. Is there any medicine for this? No, he says. I leave scratching my head.
NO MEDICINE FOR NUMBNESS AND TINGLING. MY GOD, I SAID TO MYSELF. THEY DON’T KNOW HOW TO TREAT THIS ILLNESS.March 17, 2011 at 6:17 amDear Mr. Tingles: Have you tried Mr. Jack Daniels? Seriously though, talk to your doctor. My experience is that there is none.
