Thursday, July 26, 2012
Several months ago our good friend Jacque Booth called Jim to ask if he would like to be honored in the 'Saints to Sinners' bike ride for ALS. Jacque is a hospital administrator at IHC and a group of employees there were forming a team to participate in the ride. At the time we were still unsure of his 'real' diagnosis, so Jim felt that being a honoree would be a little presumptuous. Six months ago, he would have ridden with them - but we had the ALS 'curve ball' thrown right at us and that quickly changed everything.
Today, thanks to Jim's sister Ann (whose family owns a silk screening business) and of course to Jacque and the team, we handed out 10 caps to the team leader, Jake Buckmiller (sorry Jake if this is the wrong spelling) who, with his team, will ride off into the west on Jim's behalf early Friday morning, July 27th. There are 50 teams participating this year and each team member has to donate a cash amount in order to ride. ALL of the proceeds will go to ALS research. Pictured is the hat Jim's team will wear in his honor. In case you can't read it, it says......GIVE ALS THE BIRD (the famed flamingo) with Jim's name on the back. Pretty COOL!
We want to especially thank all of you who fasted with us in regards to the Mayo Clinic trial and who have had us daily in their prayers. We still have not heard one way or the other as to whether Jim will be able to participate. This is hopefully a good sign!!!
Jim's muscle loss is still progressing. As of today, both his right and left arms and hands are pretty immobile, although he can still eat by himself with his right hand. His legs and back are also pretty weak but he can still walk with the aid of a walker. Last week we spent several days at our Bear Lake cabin with many of our children, grandchildren and my extended family who now all have their own cabins next door. Jim was his amazing, positive self, giving kiddie rides on the walker, teasing the cousins and visiting with relatives on the porch into the sunset and starlit nights. LUCKY ME to have Jim showing me how to DO this. LUCKY US that we've spent nearly 36 fabulous years together with hardly a 'scratch'! LUCKY US that we were blessed with 5 wonderful children (and going on 13 awesome grandchildren) all of whom have rallied 'round in grand support; all of whom would do anything for their Dad. LUCKY US to have extended family who are caring and supportive in every way. LUCKY US to have your friendship and faith to buoy us up and the Gospel to give us hope!
Just in closing (and not to be UNDERSTATED), Monday evening our ELEVENTH grandchild arrived in all his glory. His name will be TYSON JAMES RICH and Marianne and Lance Welch are the proud parents. This gives us an 'uneven' 7 boys and 4 girls (odds similar to our own brood) and we are mighty proud of each one of them. BLESSINGS ABUNDANT........ LUCKY US!!!!!
Our love to all of you!
Today, thanks to Jim's sister Ann (whose family owns a silk screening business) and of course to Jacque and the team, we handed out 10 caps to the team leader, Jake Buckmiller (sorry Jake if this is the wrong spelling) who, with his team, will ride off into the west on Jim's behalf early Friday morning, July 27th. There are 50 teams participating this year and each team member has to donate a cash amount in order to ride. ALL of the proceeds will go to ALS research. Pictured is the hat Jim's team will wear in his honor. In case you can't read it, it says......GIVE ALS THE BIRD (the famed flamingo) with Jim's name on the back. Pretty COOL!
We want to especially thank all of you who fasted with us in regards to the Mayo Clinic trial and who have had us daily in their prayers. We still have not heard one way or the other as to whether Jim will be able to participate. This is hopefully a good sign!!!
Jim's muscle loss is still progressing. As of today, both his right and left arms and hands are pretty immobile, although he can still eat by himself with his right hand. His legs and back are also pretty weak but he can still walk with the aid of a walker. Last week we spent several days at our Bear Lake cabin with many of our children, grandchildren and my extended family who now all have their own cabins next door. Jim was his amazing, positive self, giving kiddie rides on the walker, teasing the cousins and visiting with relatives on the porch into the sunset and starlit nights. LUCKY ME to have Jim showing me how to DO this. LUCKY US that we've spent nearly 36 fabulous years together with hardly a 'scratch'! LUCKY US that we were blessed with 5 wonderful children (and going on 13 awesome grandchildren) all of whom have rallied 'round in grand support; all of whom would do anything for their Dad. LUCKY US to have extended family who are caring and supportive in every way. LUCKY US to have your friendship and faith to buoy us up and the Gospel to give us hope!
Just in closing (and not to be UNDERSTATED), Monday evening our ELEVENTH grandchild arrived in all his glory. His name will be TYSON JAMES RICH and Marianne and Lance Welch are the proud parents. This gives us an 'uneven' 7 boys and 4 girls (odds similar to our own brood) and we are mighty proud of each one of them. BLESSINGS ABUNDANT........ LUCKY US!!!!!
Our love to all of you!
Saturday, July 14, 2012
You gotta.....'ACCENTUATE THE POSITIVE"
For the last two years my little readers theater troupe has been performing a program called
'ACCENTUATE THE POSITIVE'! Had I realized I'd have to be putting what I wrote into 'real life' practice - I think I would have paid better attention to the 'plot'! I did the 'TALK' but the 'WALK' has been quite a different story! As it turns out, it appears that Jim has been the one who has been leading us all in the 'songs' and taking the high and 'positive' road! This is unusual and exemplary, because as of this date, his ability to perform routine tasks on his own seem to diminish daily. The right arm is now on the same course as the left. He can still pick up a utensil to eat but with difficulty. He has to use a walker to get around and keep his balance and, due to the muscle loss everywhere, he is usually in pain - day and night! That seems to be the meanest thing about this disease. You loose your motor functions but not your sensory functions. In other words, you become immobile but can still feel everything.
We attended our first ALS clinic at the U this past Wednesday. It was five hours of visits with specialists from physical therapy, speech therapy (not needed, gratefully) a dietitian, a nurse, a pulmonary specialist, two different neurologists to an ambulatory specialist. It's pretty humbling (and frightening) to hear all that may be ahead for us but at the same time, helpful! The one GOOD thing is that Jim's pulmonary and diaphragm capacity is still very high -which is indeed - GOOD!
As most of you know, we also had another stroke of LUCK (let's say a BLESSING) this past week. A doctor who does stem cell therapy in Florida and whom Jim has been in contact with on and off, called to say she knew of a stem cell study for ALS beginning soon at the Rochester Mayo Clinic. Because we were in on the 'first word' (and possibly because we had recently been seen at the Mayo clinic in Scottsdale), Jim is now being reviewed as a possible candidate for this study. We know that it involves taking stem cells (probably from fatty tissue in his body) and re-implanting them in his spine. It is not risky and shouldn't be painful - but may involved living in Rochester for a month while he is being checked. Minnesota can't be a bad place to be in August or September, right? We're not sure what to expect as an outcome, but have heard that some positive results have been measured doing this procedure! We know that many of you will be fasting with us this coming Sunday, July 15th as well as keeping us in your prayers. We are hopeful that we can take part in this study and perhaps help lay a foundation for a cure for this terrible disease (not to mention giving some help and hope to Jim)
We are so GRATEFUL for wonderful family and friends. We need you in our lives to help us continue to ACCENTUATE THE POSITIVE! "No one can sidestep difficult times, but we can choose how we'll respond. In this response lies our growth and freedom. We aren't guaranteed success by being positive, but we're sure headed in a better direction when we are!"
Blessings and love,
'ACCENTUATE THE POSITIVE'! Had I realized I'd have to be putting what I wrote into 'real life' practice - I think I would have paid better attention to the 'plot'! I did the 'TALK' but the 'WALK' has been quite a different story! As it turns out, it appears that Jim has been the one who has been leading us all in the 'songs' and taking the high and 'positive' road! This is unusual and exemplary, because as of this date, his ability to perform routine tasks on his own seem to diminish daily. The right arm is now on the same course as the left. He can still pick up a utensil to eat but with difficulty. He has to use a walker to get around and keep his balance and, due to the muscle loss everywhere, he is usually in pain - day and night! That seems to be the meanest thing about this disease. You loose your motor functions but not your sensory functions. In other words, you become immobile but can still feel everything.
We attended our first ALS clinic at the U this past Wednesday. It was five hours of visits with specialists from physical therapy, speech therapy (not needed, gratefully) a dietitian, a nurse, a pulmonary specialist, two different neurologists to an ambulatory specialist. It's pretty humbling (and frightening) to hear all that may be ahead for us but at the same time, helpful! The one GOOD thing is that Jim's pulmonary and diaphragm capacity is still very high -which is indeed - GOOD!
As most of you know, we also had another stroke of LUCK (let's say a BLESSING) this past week. A doctor who does stem cell therapy in Florida and whom Jim has been in contact with on and off, called to say she knew of a stem cell study for ALS beginning soon at the Rochester Mayo Clinic. Because we were in on the 'first word' (and possibly because we had recently been seen at the Mayo clinic in Scottsdale), Jim is now being reviewed as a possible candidate for this study. We know that it involves taking stem cells (probably from fatty tissue in his body) and re-implanting them in his spine. It is not risky and shouldn't be painful - but may involved living in Rochester for a month while he is being checked. Minnesota can't be a bad place to be in August or September, right? We're not sure what to expect as an outcome, but have heard that some positive results have been measured doing this procedure! We know that many of you will be fasting with us this coming Sunday, July 15th as well as keeping us in your prayers. We are hopeful that we can take part in this study and perhaps help lay a foundation for a cure for this terrible disease (not to mention giving some help and hope to Jim)
We are so GRATEFUL for wonderful family and friends. We need you in our lives to help us continue to ACCENTUATE THE POSITIVE! "No one can sidestep difficult times, but we can choose how we'll respond. In this response lies our growth and freedom. We aren't guaranteed success by being positive, but we're sure headed in a better direction when we are!"
Blessings and love,
Sunday, July 1, 2012
Day to Day
Jim has continued to feel the affects of muscle loss; recently in his legs. We are alarmed at the pace of his loss lately but he continues to muster that famous Jim smile, in spite of the difficulty it is to get around and the fear of what lies ahead. No new news as far as medical treatments to try. We continue to lean on the priesthood blessings he has that he will respond to some therapy and all this 'twitching' will stop. We continue to ponder stem cell therapy - particularly a clinic in Mexico. There seem to be many reasons to try this - or not - but a decision has to be forthcoming, as time is of the essence.
So, off to Bear Lake this week for the 4th of July and then back home to the ALS clinic at the U. We learn more about this disease every day and the many who are afflicted (it is as common now as MS). When you go through this sort of thing, you realize how much suffering there is out there and realize their must be some purpose in all of it (hard to see and especially hard to experience). We continue to hope our faith is strong enough to receive inspiration and have the courage and faith to implement and endure. We rely on the strength, prayers and help of our family and friends to carry us - day to day and we've been the recipients of all of that in great abundance. A special thanks to Jim's sister MaryEllen who has been a 'on call' wonder. And to all of our children who, in their busy daily lives, finding extra time to visit and help in any way! Hoping and carrying on - day to day!
Friday, June 15, 2012
Mayo Clinic Visit
June 17th, 2010
We are back from a week in Scottsdale Arizona and our visit with Dr. Bosch at the Mayo Clinic. We had three days of appointments and came away wondering if we had learned anything new at all. Dr. Bosch, a well respected neurologist in the ALS field, appeared very 'clinical' - not at all reflecting the 'warm-at home' feeling that the Mayo Clinic is noted for. After another EMG to test Jim's muscle responses, we found that his muscles had digressed quite a bit since last February, reinforcing the ALS diagnosis. On our final visit and consultation with the doctor, we went away feeling that, though he still seemed quite removed from us personally, he was very knowledgeable and the information we received from him, especially in regards to doing any kind of 'stem cell therapy' at this time, was probably worth the trip. Of the places we had already researched concerning stem cell therapy, none were on the clinic's 'list to avoid' (which we were given), and so we'll continue to have a guarded look at various methods and facilities doing this treatment.
We were also given several helpful websites to keep us informed on what is being done as far as ALS test studies in the U.S. and will continue to keep current on those, so that if an opportunity to participate presents itself, we'll be ready and willing.
All in all, the trip was taxing emotionally for both of us and physically hard on Jim. Getting around is getting slow and laborious, although we're are not quite ready to go to a wheelchair. Jim's pulmonary test, which showed his lung capacity was quite normal both standing and laying, was considered very GOOD NEWS to us and to the doctor, as ALS can affect breathing early on. We are hoping to avoid this problem all together; another something 'specific' that you could all pray for.
I had forgotten how in blogging, you sort of have to go backwards and read forward. Sorry about that! We continue to look to the wonderful and promising blessings Jim has had that he will respond well to 'some kind of' therapy and that he yet has much to do. Honestly - this is HARD HARD HARD beyond words, but we truly feel we are not alone. Both of our extended families, all of our children and many many friends have been wonderful. We know others beyond the veil are also aware of our situation and are close. We know and trust the Lord. We are also very aware that there is a lot of suffering out there; many whose prayers are going to heaven along with ours. How it all works - we don't know, but it must be quite a 'wonder'! We are relying on our faith that it will all someday make sense and be 'wonder' ful!
In the 'Hotel Marigold' movie we saw this week, I picked up a new 'catch phrase' for our plight. "Everything will be all right in the end and if it isn't all right - well, it isn't the end!
Love to all!
We are back from a week in Scottsdale Arizona and our visit with Dr. Bosch at the Mayo Clinic. We had three days of appointments and came away wondering if we had learned anything new at all. Dr. Bosch, a well respected neurologist in the ALS field, appeared very 'clinical' - not at all reflecting the 'warm-at home' feeling that the Mayo Clinic is noted for. After another EMG to test Jim's muscle responses, we found that his muscles had digressed quite a bit since last February, reinforcing the ALS diagnosis. On our final visit and consultation with the doctor, we went away feeling that, though he still seemed quite removed from us personally, he was very knowledgeable and the information we received from him, especially in regards to doing any kind of 'stem cell therapy' at this time, was probably worth the trip. Of the places we had already researched concerning stem cell therapy, none were on the clinic's 'list to avoid' (which we were given), and so we'll continue to have a guarded look at various methods and facilities doing this treatment.
We were also given several helpful websites to keep us informed on what is being done as far as ALS test studies in the U.S. and will continue to keep current on those, so that if an opportunity to participate presents itself, we'll be ready and willing.
All in all, the trip was taxing emotionally for both of us and physically hard on Jim. Getting around is getting slow and laborious, although we're are not quite ready to go to a wheelchair. Jim's pulmonary test, which showed his lung capacity was quite normal both standing and laying, was considered very GOOD NEWS to us and to the doctor, as ALS can affect breathing early on. We are hoping to avoid this problem all together; another something 'specific' that you could all pray for.
I had forgotten how in blogging, you sort of have to go backwards and read forward. Sorry about that! We continue to look to the wonderful and promising blessings Jim has had that he will respond well to 'some kind of' therapy and that he yet has much to do. Honestly - this is HARD HARD HARD beyond words, but we truly feel we are not alone. Both of our extended families, all of our children and many many friends have been wonderful. We know others beyond the veil are also aware of our situation and are close. We know and trust the Lord. We are also very aware that there is a lot of suffering out there; many whose prayers are going to heaven along with ours. How it all works - we don't know, but it must be quite a 'wonder'! We are relying on our faith that it will all someday make sense and be 'wonder' ful!
In the 'Hotel Marigold' movie we saw this week, I picked up a new 'catch phrase' for our plight. "Everything will be all right in the end and if it isn't all right - well, it isn't the end!
Love to all!
Wednesday, May 30, 2012
JIM and JOANNE'S JOURNEY
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.
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