AnonymousAugust 13, 2008 at 9:53 pm
It has been a long time since I’ve written anything here, but now the occasion seems to require it. But first, some background information. My wife, Fran, became ill with GBS on July 3, 2006–the day that changed our lives forever. She was on a trip to our house in Dorchester, Dorset (England), and I was back here in Carrollton, Ga. looking after our cats, taking care of our house here, and contemplating being in another play, this time in a nearby community. The local hospital was about a block and a half away, the paramedics were quick in arriving, and she got a preliminary diagnosis that ended up being correct in slightly over 24 hrs.
The hospital ended up being very fine in all respects: excellent doctors, a caring staff, etc. However, the times ahead were very difficult. She became paralyzed in all four limbs, speech became incoherent, etc. Doctors had no idea when she might get well enough to travel back to the US. I had previous experience working in hospitals as an orderly, ward secretary, expediter in a purchasing department, and a unit clerk, so I knew something about how to get things done…as far as that goes, and not very far with GBS, since one’s progress with that illness is so unpredictable. Luckily, I did guess correctly when she could return by medical jet, arranged the details, and got her to Emory University in Atlanta on Labor Day weekend.
For us, Emory University was a real bust–no doctor who really knew much about GBS, substandard physical therapy, and patient care that rated a low “F”.
Back in Carrollton, Fran received physical therapy at a better than average facility, but again no local physician who knew anything about treating GBS patients. Basically, the care that she got from physicians amounted to renewing medication for pain that the doctor in Atlanta had written (neurontin 3600 mg.) However, Fran found it little help from pain, detested the drowsiness it caused, and ended up just bearing the pain as best she could.
It has been over two years now, and I must say that the best advice I have gotten came from a nurse in Dorchester who said that her recovery was unpredictable but would probably take three years or longer. The guru doctor in Atlanta, on the other hand, said that her major recovery would take place during the first six months and that after that it would be much slower and mostly refinement of the recovery she had already made. Also, that she might very well never walk again.
Yes, two years, and only those who have lived through times like these can understand the pain of them. Improvement has come slowly, as slowly as the healing of nerve tissue. . .what is it–one millimeter per month? Even then, recovery is never complete.
However, this past month Fran had progressed enough that she could travel back to Dorchester on her own, since I had to stay here to take care of our many cats–far more in number than you would think, though all are very sweet and well looked after. Fran is, by the way, an English professor, and was travelling there for an international conference of the Thomas Hardy Society, Ltd. that takes place there every four years. She had been asked to deliver one of the papers (35 minutes), a task that proved very difficult, since GBS had skewed the alignment of her fingers and made writing difficult. Nevertheless, she was able to write and deliver the paper as planned.
A few days after the conference, she travelled to Stratford upon Avon to visit one of our old friends (she and her husband, now dead, used to maintain an exotic animal shelter that is now kept by her son near Birmingham and along on of the canals there. Fran wanted not only to see her, but to find out whether she could complete a walk along the canals like she used to do prior to GBS–and yesterday did manage to complete a walk of 23 miles.
I am writing now to tell you this because I cannot find words to express what this means to me. Some of you may know. In so many ways, recovery is never complete; one can never recover the loss of joy during those long years. What I do know is that the ground that we now stand on has been a blessing to reach. What lies ahead, as always, is for the moment unforseeable.
Don (husband and caregiver)
AnonymousAugust 13, 2008 at 11:12 pm
Don, thank you for sharing your and your wife’s story. I and many others here can relate to what you’re saying about loss of joy. Carol and I did a lot during our 30 year marriage: concerts, traveling, camping, hiking, international folk dancing and last but not least raising our children. When I retired in 2000 from my job at Olaf College in Minnesota we both joined the Peace Corps and went to Thailand. Perhaps triggered by the many required vaccinations, at the end of our three months of training I was showing the first signs of CIDP, a slight numbness in my toes. Because of an accident Carol had requiring an operation, we returned early but came back on our own a year later. Carol was teaching community development and I was teaching computers to ethnic minority refugees from Burma. Since my variant of CIDP is progressive my symptoms started to go downhill chopping away at our joys. We stayed two years in Chiang Mai enjoying it as much as we could. We actually returned for two more months last year, me with my rollator. This probably was the last time for our travels. I have to use a power chair now and we both are trying to find joys in small ways: visits from our daughter and her two children, trips to town in our new wheelchair accessible car, being in the pool together for my aqua therapy, outdoor concerts in old town, the Peace Corps reunion here in Ft. Collins coming up in a week.
AnonymousAugust 14, 2008 at 5:48 am
i have to agree, that was a beautifully written story and your love for your wife clearly shone through.
I was struck down about the same time as Fran and had it pretty rough for a while there but had quite a quick recovery by GBS standards. I have been back at work for 18 months now and get so absorbed in everyday life i sometimes forget what i went through – and forget to be thankful for what i have. Thank you for reminding me.
And thank you to norb too for reminding me of the joy to be found in the simple things in life.
AnonymousAugust 14, 2008 at 8:51 am
Thank you for sharing. I am a newby here to the forum and I am so enjoying all the info I am receiving. I was diag. April 2007 and still using a rollator. Let Fran know how proud we all are for her. What a long winding road but she made it. How wonderful!
AnonymousAugust 14, 2008 at 10:36 am
What a wonderful success story. I am so happy for Fran. Please pass on our my warmest regards. I too can relate.
To you Don, much of our recovery is dependent on our support network. Thank you for being a loving and caring spouse/caregiver. Where would we all be if it weren’t for all of you as caregivers. Thanks you, thank you! 🙂
AnonymousAugust 14, 2008 at 9:19 pm
All of you have been so kind with your responses. Norb, you and your wife make me want to jump in my 2001 Taurus so loaded down with cat food for the many ferals around town and around the local university that I feed and drive all the way to Fort Collins to meet you. I often lament about how far apart I am from the people with whom I feel such immediate attachment. May we all join in one circle of the spirit, chant a few magic words, and. . .oh, well, maybe I’m the one who needs all the neurontin and a good night’s sleep.
AnonymousAugust 14, 2008 at 9:47 pm
Driving with a bag of cat food and feeding the poor little strays with no home. HMMM! Might be kind one weekend and leave some kitty food in certain areas and hope they get fed well!
Just my luck, I will open up my front door and find a bunch of possums begging me for food the next day! LOL! I have to make a joke here! I am so happy things are going well and pray they continue. Life is too short and what life we have we must try and enjoy what we have. Thanks so much for giving me hope! Hugs
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