My heart breaks, but after one year do not give up hope. For me I am in year 8 and i REFUSE to give up hope. I suspect that following the virus of GBS I was hit with ME (Chronic Fatigue Syndrome) but one thing I have learned is that I have had to do my own mediucal research; I've spent thousands or hours researchingl reading and then walking that tightrope with medical people yto give them information I have- you've heard that joke: What's the difference between a doctor and God? God doesn;t think he's a doctor- to a level it is very very true.
You need to get her to a neuromuscular specialist but every single doctor will have to be educated and that means by you. So haul out the New England Journal of Medicine, gert to the library of your nearest medical school, troll Amazon.com (buy used- that's what I did) and start reading everything you can about this condition. In regard to making her more well, the MOST important element is not to rush it. Any axon or muscule that is dammaged as the myelin sheath are repariing themselves is permanent. At the same time, atrophy is dangerous, so gentle masssage and slow, easy manipulation of the fingers and knees is very important. One of the reasons I failed to thrive is the old PT philosophy "No pain, No gain." This is true in most cases but with GBS it is terribly destructive and when they put me on a stationary bicycle and pushed me so hard, I permanentlyu dammaged three muscles and two axons in my back and thery let me know it every single day. Sooth her pain and the most important form of therapy is hydro-therapy.
She needs to spend time in both jacuzzi tubs and swiming pools. Water Therapy is very critical and, in fact, if you could get her into a pool every single day, she could naturally work the muscles she needs.
Educate her as well. There are books written by people who've had this illness and perhaps they willl help her to know she is not alone. Most of them, however, are whiny about care, looking to blame and then, ultra religious. Even "No Laughing Matter" by Joseph Heller was of little help to the patient, however YOU must read it, because every other chapoter is written by Mr Heller's friend who was his caregiver and the damage that can be done to the caregiver is horrific if unchecked. My own book- not yet completed- spends a lot of time talking about this very important element. It is very likely that President F.D. R. was afflicted by GBS and not Polio. These small things help.
Most patients spend a year I N the hospital. I was rushed out, despite the good care I had. She will need a pain specialist because she will require a "liscenced dealer" to write narcotic 'scripts each month. Perhaps she will be lucky and will not require narcotics in her pain management, but she will be rare if that is the case. I will save medications and pain management for later and stick to your questions.
so she needs to be seen by a doctor once every 30 days for prescriptions and to monitor her vitals, her day to day activities and progress. Do not waste time having her declared disabled. I waited far too long, not thinking that I could reverse it if made well again and I used my life savings in five yars of waiting. Apply for every public thing you can. Begin with Social Services. She needs to have people and specialists come into the home every single day.
I suspect she suffers from chronic fatigue. in case she has not explained to you how this works with GBS patients, consider a gas tank in a car. Once the tank is empty the car ceases to function. Yes, you can play the stereo off the battery but eventually the battery will die. This is the same as with her body. The moment her body says, "I am exhausted, or I am done" she MUSTY get to sleep. Empty means EMPTY. to push beyond that is to damage muscles and axons further. in the meantime, she will possibly be trapped in bed for long periods of time. Make sure that she always has something to druink beside her, that therer is always some kind of food and that someone is making sure she gets her medications as needed. Keep her comp[any. books, DVD's, radio. After my long stint trapped inside my body and head in the hospital I've required a fan blowing on me at night (likely as a result of trauma from the respirator), a light styronger than a night light, and a DVD of familiar sitcoms that loops constantly. Silence, or CNN can affect the dreams and I guarantee you that her dreams have changed substantially both in regard to vibrancy and to subject matter.
She may very well walk again. A relfelx test only? Bull! Even with an ECG they canp;t say she won;t walk again. I went from total paralysis from the nose down, that6 included the loss of speach, and now I am able to ambulate with one cane. don;t believe it. the doctors just DON'T KNOW. And when they say she will never walk again, smile and take FULL adv antage of every single thing that offers, but don;t give up. She'll walk. Be careful of balance. Ther trip fr4om my bed to my cahir in the parlor is lined with pianos, bookshelves, tabl;es and walls so that should I lose balance I can fall against sometyhing or use it to guide me. It has been over two years since I fell.
So quick recap: Unless you're meeting with Dr Joel Steinberg (and I highly reccomend his book written with, I think, Gaillbreth -two doctors who both had GBS) there is no such thing as an "appropriate doctor." That would be ANY medical personel who is willing to respect you enough to listen to you. I began my illness in the best medical city in the country- Boston, yet in the podunk Finger Lakes of NY State I have found an OD named Ralph Ortiz who is, without questioln the best doctor yet. Do not forget that a therapist is just as important for BOTH OF YOU. Trial and error.
Physical Therapy, I've covered, but again DO NOT PUSH. If she says she is tired then STOP. Hydro therapy. Avoid muscle atrophy with gentle massage ande manipulation of digits, the ankles, knees. (My toes used to feel fantastic when someone would grab them and pull like hell as they squeeze4d, but that's just me.) Steinbergs book on GBS discusses appropriate PT in detail.
Any doctor who tells you ANYTHING definitive is full of shinola, because there is virtuallhy not enough research done to know for certain.
I would stack my wotrds and experiernce beside any medical doctor anywhere.
If I can help more, please hit me up.
Dave Seaman
dnseaman@hotmail,com
