Jim has given me permission to begin a weekly update on our 'journey' with ALS. I say 'OURS' because we decided from the beginning (thirty five years ago) that we would share the good and not so good times together - as ONE! Experience has shown us that ONE really can't do it alone! We clearly admit that we have been greatly blessed over the years. This experience then is...well, part of that 'enduring thing' we all signed up for!
Just a brief 'backtrack' for those who may need to know!
In August of 2011, Jim began to feel 'twitches' in his arm. By September they had moved to other areas of his body and by November they had picked up intensity. He consulted with our internist, then a neurologist who finally referred him to Dr. Bromberg at the University of Utah. From the onset, Jim's symptoms were different and so, for a time, they put him in a 'corner'; saying this was definitely a motor neuron disease, but not 'definitively' ALS. By February, on further consultation with Dr. Bromberg, we were told Jim did in fact have ALS. The consistency of the twitching has not, as yet, let up! Jim immediately consulted with a PHD in nutrition in Payson who put him on a six week anti-toxin body 'cleanse' (basically a non-dairy, non-gluten diet with supplements) to try to help his cells better assimilate nutrients. He continues to do this, adding back foods a little at a time.
As of May 30th 2012:
Jim has lost considerable muscle mass in his arms and some in his legs. I think his great athletic build has helped him keep up the walking but it has slowed down and is harder. He has limited use of his left hand and arm and his right hand and arm are also weak.
Thanks to our wonderful friend and neighbor Jacque Butler (a noted professional in the compounding pharmaceutical business) and her 'connections', Jim has been drinking a special water that has been treated with minerals specific to inhibiting the uptake of glut amine (supposedly a problem with ALS). This is courtesy of a nano-technology biochemist in Provo who has taken up Jim's cause and also a good friend Burt Wonnocott, an attorney who works directly with the company. After several weeks we have seen no noticeable benefits from the water, but continue to take it!
On June 12th we have an appointment at the Scottsdale Mayo Clinic with a neurologist noted for his work in ALS (a recommendation from Dr. Bromberg at the U). We are not going for a second opinion but rather to ask him specifically about his opinion of stem cell therapy and any specific advice he can give us in regards to ALS. We have done some research and had conversations with a few the premier doctors who do this therapy in Florida and Mexico, who feel that it could be beneficial to Jim. The difficult thing is deciding which option is best and if, in fact, there is a viable option at all! We know it will take a great deal of prayer to make this decision and know we cannot do it without a feeling that the Lord would direct us in this path. This is where our 'journey' has taken us to this point!
It would be impossible to be able to 'keep on swimming' without all of your love and support. Sunday night we arrived home from a wonderful trip with our children and grandchildren to southern California. Although it was dark, we could tell we had been 'invaded' by an amazing flock of PINK Flamingo's. Of course, they were stuffed, blown up, plastic and popping up on straws all over our lawn. No, not just a few either. They were hanging from trees, perched in window boxes and clinging to lamp posts. Hearts were also hanging by ribbons on trees and bushes and 'love' notes everywhere. The FAVORITE was a sign around a few of the flamingo's necks reading (you've simply got to keep your sense of HUMOR through all of this)...GIVE ALS THE 'BIRD'! We LOVED IT! So, to any of you who might be the ones who 'flamingo'd' us' .......IT MADE OUR DAY and we thank you from deep in our hearts! Bird's the word!
We KNOW we are loved and watched over by you and a higher power! Knowing this helps but truthfully, it is still so hard to realize it is really happening to us! We wish answers to prayers came more clearly and we could ENVISION exactly what to do. We pray constantly for inspiration. You all know Jim. His testimony, despite his anguish, is unwavering (mine is a work in progress). He is an amazing example to ALL around him. We move FORWARD with the help of your prayers and faith in our behalf.
