Hedley LaMarr
Your Replies
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September 8, 2010 at 9:50 am
I have met two people who have recovered fully. What is full? They walked into my hospital room to visit me on their own two feet. One had an 8 month episode and the other was 2.9 years. I don’t know what their residuals were and I did not ask. Both were in their fifties. One lady and one man. I’m in my 19th month of illness and using a walker to get around safely because I have not healed from below the knees downward and remain with drop feet. At the end of the day these legs feel no different than the dining room table legs. So I wait and wonder: is this the best I will ever do? My Neuro tells me that the longer you go, the less your chances for a full recovery. I know things could be worse in life, but of course I am just concerned with myself. Should I feel guilty about that? I don’t think so. I hate this illness and my heart aches for those worse than me. I have given up the anger because it saps your energy: a word of advice to others. And self-pity can pull you into a dark hole. It is a trick to stay buoyant, a balance between being grateful for other things and saying to yourself “it could be worse” which is solely your personal province to say. Meanwhile, I thank you for your answers to my question?
August 24, 2010 at 11:20 amHere is my experience with Acupuncture performed by an experienced Chinese doctor: I had 2 sessions and the post treatment was painful for two days after in each instance. It was as if he had stirred up coals on a fire. I was his first GBS patient. He reports having success with stroke patients. By mutual agreement we stopped treatment. The needles were placed in both legs from the knees down which is the area that has not recovered yet. I tried, but the resulting pain was not worth further treatment. This is just MY experience.
August 21, 2010 at 10:18 amIf I read your post right, your wife started this 5/22/10 and you brought her home in June 2010. I was rapidly discharged after treatment for GBS and left the hospoital after three weeks. BUT, I went to rehab, not home. I think your wife belongs in rehab. Has anyone said that to you? She needs professional setting care.
August 15, 2010 at 8:21 amWell, that goes to show ya! One doctor differs from the next. Here is what I believe: Take all the Neurologists and combine what they know about GBS and I’m sure it can fit sideways inside a thimble with room left for my AFO’s. No offense intended to the good doctors.
August 10, 2010 at 7:19 amI developed a hypothyroid condition that is being treated with Synthroid in a small amount. It came back into range immediately. Ask your doctor if this could be a viral transient condition due to GBS. Do not let it fester. My medicine dosage is so small (0.025mcg) that my doctor said he had never seen a dose that small. We may stop it to see what happens. I was a perfectly healthy male at 67 yers old before GBS. I believe it came with GBS.. Good luck.
July 30, 2010 at 9:16 amCarolyn – thanks for making me laugh as well. The 1mm per day growth of Myelin comes from a source I cannot remember now, but seemed legitimate at the time. It is quoted by most Neurologists including mine and is based on a study many years ago. An English surgeon cut a nerve in his arm and monitored the growth – and alas 1mm per day is what he measured. P.S. He tried to get a paid volunteer – but they told him “go cut your own arm.”
July 27, 2010 at 10:58 amThank you all for your input. I am skeptical, but will try. My Neuro doctor seems underwhelmed with alternative approaches, but does not tell me not too pursue them. He seems to think it’s all about remyelinization. And he declares like most others that myelin heals at 1mm per day. At that rate, I should be healed five years after I’m dead. They say your finger nails continue growing after death, maybe myelin does too. Forgive the sardonic humor, but the illness gets tiresome and boring. My best to all of you very nice people.
July 3, 2010 at 12:17 pmHello Guitarman:
You ain’t seen nothin yet – as the saying goes. Wait till you encounter the person who says [B]”it could be worse”[/B] and then proceeds to tell you about someone else! I had a person I know for years who compared his broken ankle to my condition telling me he knew what is was like to lose his independence.
Keep telling these people you feel like s**t until they get the message. It some cases they may never get it. Cut some of the others a break – because they just don’t no what to say. And remember this – there are people here who know how you feel – keep your chin up – each day will get better, albeit agonizingly slow.July 3, 2010 at 11:46 amI have confirmed the same – there is no such drug yet. WE could fund widespread research – but that kind of money goes to sports figures, not the sick or disabled.
June 4, 2010 at 9:28 amAsk his Neurologist about IVIG treatment – has it been done? Find out. If not, ask why. Next, is his emotional and mental support. Explain to him that as time goes by he will improve. Help him adjust to the fact that this is generally a long term recovery. Long term means 6 months to two years, but he must take a day at a time. Gather every emotional support for him such as friends and family and clergy if religious. Some people need anti-depressants to cope. Give him tender loving care – keep him pain free. Keep him worry free about his personal life, his home, his bills, his everything. Tell him not to worry. Stay on top of the staff who cares for him – make sure they are treeating him well. Time and tender care. If you have a laptop computer – go on You Tube and enter Guillain Barre. There are many stories on there about GBS. I cannot emphasize strongly enough that emotional support is primary while he fights this battle. You sound like a great sister. God bless you.
May 14, 2010 at 5:43 pmI am home now and not fully recovered after 1 year in a nursing facility, using a walker to get around. Here are some of my positives:
1. Not sharing a room.
2. Being away from the grim atmosphere of this kind of facility with all kinds of pathetic visuals.
3. Not having to eat the dreadful thing they call food.
4. Smoking a cigar, and having an airline size vodka.
5. Being away from people who used to say “it could be worse.” How stupid and insensitive is that? I knew damn well things could be worse, but you don’t say that!
6. Being away from staff and people who said “how are you doin today?” with a broad smile and gone before you could answer.
7. Not being around so called caregivers who did not belong in the job to begin with (nurses and health aides) along with some indifferent doctors.
I had a nurse who refused to reach for something I needed and told me to try harder when I said I could not manage it. She was imitating tough love therapy in her mind. I wish her the worst.
8. Managing boldily functions without being in a diaper.
Finally, I want to applaud those who have found a silver lining to this debilitating illness. I admire you for your attitude. But this is truly something I could have done without.May 3, 2010 at 11:17 amThanks to all for your responses. I no longer have pain as we know it with GBS. There was a time when changing socks I would go thru the roof. I am left with numbness in the lower legs and feet. It gets worse as the day goes on. I will be asking my Neuro doctor about cutting off Neurontin because it is not helping to alleviate the numbness.
