This is our new Toyota Sienna Conversion Van
Should be pictured with recent post entitled
'Equipped for....whatever!
(I might be getting 'blogged' down by all these blogs today)!
Tuesday, August 28, 2012
BEHIND AGAIN - Tyson James Rich - 7-23-12
LEST I 'FORGOT'!!!!!
To all our wonderful family members and neighbors who helped on our 'super Saturday ramp and yard' project, my sincere apologies for 'past posting' this. It will not soon be forgotten - the hot August morning you all spent helping us build a wheelchair ramp for Jim and spruce up our yard. Just wanted to know your efforts will forever be etched in our hearts.
'EQUIPPED' for......whatever!
I'm a little behind here, but last week was pretty darn busy! Our new Sienna van which had been being converted to be handicapped accessible, finally arrived. This is one car that should never be on anyone's 'wish list', but if you have to have one, it's a very, very nice one. (Special thanks to Jim's brother Dan for having an 'in' with Toyota - and to the very nice people at Freewheel Mobility). The day following the arrival of our new 'champagne' colored vehicle, we received word that a fellow employee of a friend whose Mother had just passed away from ALS, was hoping to find someone to GIVE her (nearly new and very expensive) motorized wheelchair and bed to. Someone with ALS! After speaking to Gina Evans of Bountiful, we were overwhelmed to find out that this truly was meant to be a GIFT and that Jim would be the recipient! The following day our U of U contact for wheelchairs called and we were able to find out from him that adjustments could be made so that the chair would fit Jim, when the need for it arrives. So - in a matter of days, we have become - 'EQUIPPED' for.....whatever!
In between all of the many many forms we have filled out and the people we've been referred to for help, we have been doing a few 'tests' to send to our medical contact in Oregon who I referred to in the last post. We are awaiting the results of those tests in hopes that it will give us better insight as to whether or not doing any 'stem cell therapy' is appropriate. As I've mentioned before, the wonderful Priesthood blessings which Jim has received, have all indicated that there would be some 'relief' from his symptoms through 'therapy'! That we've been patiently awaiting which direction to go is an understatement!!! Our prayers have been constant in asking for a confirmation that this would be the right thing to do. We know that we have also been the beneficiaries of your faith and prayers as well. Although we haven't had specific answers, we have truly felt 'lifted' by angels the last several weeks. Our days and nights are tedious and we've lost all sense of 'decorum' in the 'bathroom', but we feel that we've been 'carried' through these difficult days thanks to the love, faith and prayers of so many. It is humbling at best to be in this position; so easy to be the 'giver', so very hard to be the 'givee' - but we are learning that it blesses others to bless - even in the smallest ways! It reminds me of a little poem I put in my high school scrapbook when I was elected president of the Olympus Girls association in 1967 (yikes!)
They might not need me, yet they might, I'll let my head be just in sight!
A smile as small as mine might be, precisely their necessity!
Wednesday, August 15, 2012
MOVING ON!
August 15th, 2012
There are times when you've just got SCREAM! Luckily, we seem to be continually surrounded by family and friends, which hasn't allowed me to get too 'out of control' before I regret it. Monday was one of those days.
Having not heard from the Rochester Mayo clinic in about ten days, we called early Monday morning to get an update as to our position there. A voice on the other end told us (in the sweetest way) that the release forms they had requested from us 10 days earlier arrived, but (didn't we know?) they were supposed to go to OUR doctors first, then to the Mayo! "Oh", she replies, "didn't we send you an email about that"? Oops - NO!, "Mr. Rich", (she sweetly continues) "after you do send the forms to your other physicians and then we receive them, the earliest we could review you for our study would be next year - MAYBE MARCH!" I, (not so sweetly reply)"WHAT! This is the MAYO CLINIC for heavens sake"! "We were told that we would be called in August and considered for their study in September". Except WOOPS, you forgot to tell us that you've already begun the first trial!" (Apparently there were plenty of others in line to be considered, but this wasn't IMPORTANT for us to know)! I am hearing my words all over again in my head as I write: "YOU PEOPLE HAVE VERY POOR COMMUNICATION SKILLS FOR THE MAYO CLINIC". As we continued our conference call with her, Jim, of course was keeping his cool and I was NOT! (Me - again) "The very least you could do was inform us of the mistake we made with the release forms so we could regroup! (I must now leave the room and do a 'silent' SCREAM (because others are close by)and let Jim finish up!
In retrospect:
The Sunday evening before, Jim and I were both given priesthood blessings by our sons that we would be able to make a decision about the trial in Rochester. So, dear readers, perhaps our prayers have been answered for us, as we feel 'waiting' further for the Mayo Clinic would not be prudent!
MOVING ON!
For several days we have been communicating with a doctor (naturaopathic) in Medford Oregon who has taken a real interest in Jim. We've sent him all our medical records to review. He is one of the founders of World Stem Cell LLC with connections to a stem cell clinic in Cancun, Mexico. We're now investigating the possibility and value of a procedure there. If it is to be, it will be! We feel strongly that we are being watched over and directed by a higher power. We also know, however, that time is of the essence and so we're not going to WAIT too long for this opportunity - if we feel it is the right thing to do!
Luckily, Jim is hanging in there; still using a walker but with more effort. We seem to be seeing someone new each day in preparation for anything to come. Luckily, we have our Bear Lake home to retreat to for time away from all the pressures of countless decisions to be made. Luckily we' been 'Richly' blessed (as you see pictured above) with a beautiful family, each who raise our spirits and remind us each day, of the blessings and rewards of our eternal marriage. So, we're MOVING ON, and hope that you will continue to 'press forward' with us!
There are times when you've just got SCREAM! Luckily, we seem to be continually surrounded by family and friends, which hasn't allowed me to get too 'out of control' before I regret it. Monday was one of those days.
Having not heard from the Rochester Mayo clinic in about ten days, we called early Monday morning to get an update as to our position there. A voice on the other end told us (in the sweetest way) that the release forms they had requested from us 10 days earlier arrived, but (didn't we know?) they were supposed to go to OUR doctors first, then to the Mayo! "Oh", she replies, "didn't we send you an email about that"? Oops - NO!, "Mr. Rich", (she sweetly continues) "after you do send the forms to your other physicians and then we receive them, the earliest we could review you for our study would be next year - MAYBE MARCH!" I, (not so sweetly reply)"WHAT! This is the MAYO CLINIC for heavens sake"! "We were told that we would be called in August and considered for their study in September". Except WOOPS, you forgot to tell us that you've already begun the first trial!" (Apparently there were plenty of others in line to be considered, but this wasn't IMPORTANT for us to know)! I am hearing my words all over again in my head as I write: "YOU PEOPLE HAVE VERY POOR COMMUNICATION SKILLS FOR THE MAYO CLINIC". As we continued our conference call with her, Jim, of course was keeping his cool and I was NOT! (Me - again) "The very least you could do was inform us of the mistake we made with the release forms so we could regroup! (I must now leave the room and do a 'silent' SCREAM (because others are close by)and let Jim finish up!
In retrospect:
The Sunday evening before, Jim and I were both given priesthood blessings by our sons that we would be able to make a decision about the trial in Rochester. So, dear readers, perhaps our prayers have been answered for us, as we feel 'waiting' further for the Mayo Clinic would not be prudent!
MOVING ON!
For several days we have been communicating with a doctor (naturaopathic) in Medford Oregon who has taken a real interest in Jim. We've sent him all our medical records to review. He is one of the founders of World Stem Cell LLC with connections to a stem cell clinic in Cancun, Mexico. We're now investigating the possibility and value of a procedure there. If it is to be, it will be! We feel strongly that we are being watched over and directed by a higher power. We also know, however, that time is of the essence and so we're not going to WAIT too long for this opportunity - if we feel it is the right thing to do!
Luckily, Jim is hanging in there; still using a walker but with more effort. We seem to be seeing someone new each day in preparation for anything to come. Luckily, we have our Bear Lake home to retreat to for time away from all the pressures of countless decisions to be made. Luckily we' been 'Richly' blessed (as you see pictured above) with a beautiful family, each who raise our spirits and remind us each day, of the blessings and rewards of our eternal marriage. So, we're MOVING ON, and hope that you will continue to 'press forward' with us!
Monday, August 6, 2012
Reality Check
We have been trying to keep everything in perspective the last several weeks. After nearly 36 years, we're finally putting our 'house in order' so that we are able to meet the challenges of each new day with ALS. Jim has been vigilant in making decisions ahead of time so that we are prepared for whatever comes. We have purchased a new Toyota van which is being converted to be handicap accessible. This Saturday our family, along with good neighbors, will help us build a wheelchair ramp in our garage. Applications have been completed for social security and medicare benefits which come with retirement and disability. Our legal documents have been updated and Jim is working hard to update things at home and the Bear Lake cabin to make sure they are 'ship shape' for the future. So, retirement has been anything but 'boring' so far, although I know that Jim is missing all the 'technical' talk and comradery with fellow employees at the Dennis Group. The truth is, this is all VERY DIFFICULT and emotions run high as things change for us every day.
We've been the recipients of so many kindnesses from friends and family and they are not without our deep gratitude. We've had treats and notes delivered by kind friends and neighbors. Home and visiting teachers who've promised to be on call for any help. Jim's sister Mary Ellen volunteers one day each week. She is completely at our disposal for that day and it has been such a blessing. My sisters Margaret and Janette are loaning us a cleaning lady whenever needed. Jim's family, Paul and Shell, Ann and Joe, Mike, Dan and Becky, Brian and Susan and their children along with my siblings Rob and Liz, Margaret, Janette and Brent and their children have helped us clean up our yard and are always offering any assistance needed. Our own children Coby and Tiffany, Ben and Whitney, Pat and Anna-Lisa, Bob and Sara and Marianne and Lance are all taking turns bring in dinner on the weeknights and bring potluck on Sunday evening. Their positive attitude and helping hands, along with the 'pure joy' their children bring, 'lighten our load and brighten our road'!
But truthfully, this is all just PLAIN HARD and UNBELIEVABLE. Hard to see someone you love in pain and discouraged. Hard and humbling for Jim to have to completely give up his independence into my often clumsy hands, especially when I am now the 'driver' and he has to watch me drive his beloved Prius like (in his words) Mario Andretti on drugs! Hard to have all this attention focused on us, even though we don't want to deny anyone the blessing of helping. Hard to be so completely exhausted every night! Hard to have no clear remedy for ANY relief from this HIDEOUS disease and any clear direction as to where to go with our stem cell therapy (still no news there). We WAIT and wait....it all feels SO UNFAIR! 'CRAP' is a kind way to put it (I have other words I won't mention here)!
Yet despite it all, Jim seems to have such a pure communication with the Lord. He appears to have more gratitude for blessings and more 'meekness in trial'! I admit that I often feel the spirit and comfort of family long gone and the 'peace that passes understanding'; that we've not been forgotten! This, along with all of your prayers and love, becomes our reason to keep HOPE alive. So, although it is all VERY REAL - we still also have reason for REAL hope!
We've been the recipients of so many kindnesses from friends and family and they are not without our deep gratitude. We've had treats and notes delivered by kind friends and neighbors. Home and visiting teachers who've promised to be on call for any help. Jim's sister Mary Ellen volunteers one day each week. She is completely at our disposal for that day and it has been such a blessing. My sisters Margaret and Janette are loaning us a cleaning lady whenever needed. Jim's family, Paul and Shell, Ann and Joe, Mike, Dan and Becky, Brian and Susan and their children along with my siblings Rob and Liz, Margaret, Janette and Brent and their children have helped us clean up our yard and are always offering any assistance needed. Our own children Coby and Tiffany, Ben and Whitney, Pat and Anna-Lisa, Bob and Sara and Marianne and Lance are all taking turns bring in dinner on the weeknights and bring potluck on Sunday evening. Their positive attitude and helping hands, along with the 'pure joy' their children bring, 'lighten our load and brighten our road'!
But truthfully, this is all just PLAIN HARD and UNBELIEVABLE. Hard to see someone you love in pain and discouraged. Hard and humbling for Jim to have to completely give up his independence into my often clumsy hands, especially when I am now the 'driver' and he has to watch me drive his beloved Prius like (in his words) Mario Andretti on drugs! Hard to have all this attention focused on us, even though we don't want to deny anyone the blessing of helping. Hard to be so completely exhausted every night! Hard to have no clear remedy for ANY relief from this HIDEOUS disease and any clear direction as to where to go with our stem cell therapy (still no news there). We WAIT and wait....it all feels SO UNFAIR! 'CRAP' is a kind way to put it (I have other words I won't mention here)!
Yet despite it all, Jim seems to have such a pure communication with the Lord. He appears to have more gratitude for blessings and more 'meekness in trial'! I admit that I often feel the spirit and comfort of family long gone and the 'peace that passes understanding'; that we've not been forgotten! This, along with all of your prayers and love, becomes our reason to keep HOPE alive. So, although it is all VERY REAL - we still also have reason for REAL hope!
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