Last night LaRee was tired and slept the majority of the time. But when she did manage to wake up she was just as alert as the night before. She would nod yes and no (ever so gently), mouthed the words “Hi” to her brother and was blinking very well. Occasionally when we asked a question there would be no response. However we are so grateful that we can more clearly understand her method of communication. To our understanding she was sleeping on her own and had not been given a drug to help her sleep.
LaRee was transferred today to Regional Hospital in Tuckwilla. This is not “Rehab” this is an offsite ICU type facility called ALTAC “Long term Acute Care” There are only two ALTAC facilities within a 5 state region and they both happen to be located in our state. We are so grateful for that!! Members of our family visited both locations and did some research to pick the best one of the two. We feel confident that we have made the best decision and even managed to secure her a private room!!
I was reading in “Diagnoses to Recovery” last night and found it most interesting. We have discussed this book in previous emails. It was published last year and written by a doctor who actually had GBS. LaRee seems to have one of the more severe cases (according to the book). And one of the main challenges in her recovery will be her mental and emotional well being. Please keep that in mind as you continue to serve, visit and pray for her.
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LaRee is a vibrant and beautiful woman who is recovering from a severe case of Guillain-Barre Syndrome, a very rare and complicated auto immune disorder that leaves the body temporarily paralyzed. She resides with her darling daughter Chloe and her husband Pat.
LaRee Keenan
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LaRee’s Benevolent Fund Information
Deposits can be made at any Bank of America in the continental United States to the: LaRee Keenan Assistance Fund
Informative Links
Bed Number Ten
A patient's personal view of long term care. Seen through the eyes of a patient totally paralyzed with Guillain-Barré syndrome, this moving book takes you through the psychological and physical pain of an eleven month hospital stay. BED NUMBER TEN reads like a compelling novel, but is entirely factual. You will meet: The ICU staff who learned to communicate with the paralyzed woman - and those who did not bother. The physicians whose visits left her baffled about her own case. The staff and physicians who spoke to her and others who did not recognize her presence. The nurse who tucked Sue tightly under the covers, unaware that she was soaking with perspiration. The nurse who took the time to feed her drop by drop, as she slowly learned how to swallow again. The physical therapist who could read her eyes and spurred her on to move again as if the battle were his own. In these pages, which reveal the caring, the heroism, and the insensitivity sometimes found in the health care fields, you may even meet people you know.
4 comments:
I have been watching some of the video links about GBS and I was wondering if LaRee recently received a flu shot???
Another friend of mine was diagnosed with what they thought was GBS and then deceided it was a sister virus. She believes she got the virus from a flu shot.
Please let LaRee know that we think of her very often and she is in our prayers.
LaRee,
We are thinking of you and pray for you daily.
Shawna has been struggling with a nerve/brain-related disorder (completely different than GBH) but with similar symptoms with nerve sheath health.
She has found a doctor who is treating her simply with injections of vitamin B-12 after the doctor found that Shawna's levels were 20% of normal - probably due to depletion from repeated pregnancies. Shawna is returning to the health that I have known her to be at since I first met her.
Please have your B-12 levels tested to verify that they are normal.
I do not claim to be a doctor, but often the key to recovery is right in front of us.
We are continuing to pray and fast for your recovery.
Love,
The Woods.
Vitamin B-12 And GBS
I doubt that many HSI members have been diagnosed with the relatively rare Guillain-Barre Syndrome (GBS) - a disorder of the central nervous system characterized by the destruction of the myelin sheaths that surround and protect the nerves.
But I know at least one member is coping with GBS. Her name is Kathy, and her questions about GBS prompted instructive answers from HSI Panelist Allan Spreen, M.D., who has some excellent information for all of us about supplementing with vitamin B-12.
In an e-mail, Kathy wrote: "I was diagnosed last Aug with Guillain-Barre Syndrome. I had never heard of it before and I really have no idea why I got it. I am still very tired and therefore the doctor did a blood test for B12 and found mine to be very low so he prescribed 1000 mg of B-12 per day. I found a timed released 1200 mg of B-12 and I am taking that with the hope it will help. I wondered if the low B-12 could be a cause or effect of the GBS?
"Another question is how can I get more B-12 in my diet? Can age make B-12 harder to get out of your diet? I am only 52 years old and I know from my hospice volunteering that many older people, men it seems, get B-12 shots so is this another problem with aging?"
In general, most of us absorb vitamins less effectively as we age. So B-12, like other nutrients, doesn't reach the system quite as well as it did when we were young pups. But according to Dr. Spreen, there are steps we can take to help B-12 do its best work. Here's Dr. Spreen's response to Kathy's questions:
"Guillian-Barre is a mystifying nerve problem. You're VERY lucky to have your B-12 level come back low (with the range of normal used today the level has to be ridiculously low to be picked up by the test as abnormal).
"I had many chances to recommend B-12 for shingles (for which it works well, since there are no 'cures' I was free to prescribe it without having to worry about not adhering to medical convention). However, I did not get an opportunity to try it for Guillain-Barre, which was too bad, because I think it should help (even with normal blood levels). B-12 works on the nerve sheath, which is irritated in GBS.
"The daily dose is fine, and could be continued for a long time (I'm sure it's 1000 mcg, though, and not mg). However, I'd suggest a few changes: first, forget time-release form. It's hard enough for the body to absorb without putting it in a pill designed NOT to release it. In fact, any oral form cannot be counted on. I'd suggest the sub-lingual route, meaning under-the-tongue.
"My other suggestion would be to use methyl-B-12, instead of cyano- or hydroxo-B-12. It's harder to find and more expensive, but worth every penny."
As for dietary sources, Dr. Spreen says that B-12 is only available in any reasonable amount in red meat, "no matter what the vegans say about legumes having enough."
To Your Good Health,
Jenny Thompson
Health Sciences Institute
my girlfriend in North Dakota had this syndrome in 1992. She has recovered but it was a year long battle and rehab. She has offered to talk to you and offer support to you with first hand knowwledge. Please contact me if you are interested. God bless you all thoughts and prayers to you.
Julie Hines
We wanted to send a quick note to offer our best wishes for LaRee, Pat her husband is our cousin, even thoguth we've not seen Pat for many years and never had the opportunity to meet LaRee, your quick and full recovery is in our prayers!
Best Regards,
Steve and Mary Scott, Merrimac, WI
slmscott@msn.com
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