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!
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