A Seeker’s Harvest is about my journey and talks about how diet and the environment can affect our health. It’s serious business and much of the time people just chug along until something breaks, sometimes disastrously. Just know that doesn’t have to be that way.
NEWS UPDATE OCTOBER 3, 2013:
After speaking to Dr. Williams in more detail, it is with great disappointment Kevin faced the realization going to Bogota, Colombia is no longer an option at this time. Despite Dr. Williams’ news release, website and staff, his therapy does not currently offer the gene therapy/stem cell combination. In addition, Dr. Williams expressed his concern that other ALS patients have had difficulties with their lower lung capacity and the Bogota high altitude. As you know, Kevin struggles already with low lung capacity. The altitude was a consideration from the start, but with a chance at a one time treatment that would provide a lifetime of benefit, the benefit outweighed the risk and the plan was that Kevin would be on oxygen the entire trip. However, hearing that some ALS patients struggled, and one ALS patient ended up on a ventilator in a Bogota hospital, it was necessary to choose another option.
Because the stem cell treatment that Dr. Williams is currently able to do (without the gene therapy portion) is also available here in the US with a greater reduction in health risk and for less money, the following plan to stabilize Kevin’s symptoms has been devised: November 6th and 7th, 2013, Kevin will receive stem cell treatment at The Stem Cell Rejuvenation Center in Phoenix, Arizona. While it is not the one time state-of-the-art treatment he was hoping for, stem cell treatment is still state-of-the-art and does provide hope for increased strength and a plateau in his degenerative symptoms. Once again we are reminded of the ups and downs to dealing with a terminal illness, and we are thankful for this second option.
The Stem Cell Rejuvenation Center opened in 2002. They have provided treatment to many ALS patients for the past four years. For more information about them please visit the-stem-cell-center.com.
This procedure, which is not covered by insurance, cost $7600. It is a procedure that will need to be done yearly, or until the current phase I and phase II ALS stem cell trials (or something better) are mainstream and paid for by insurance. Without the current donations received, Kevin would be unable to do this treatment. Because of donations Kevin was able to apply and be accepted for treatment in Arizona immediately. Donations made that possible. Thank you!
This journey would be impossible without your continued love and support! Because Kevin has an ongoing need for financial assistance, the fundraising portion of KevinsCrusade.com and Kevin’s YouCaring site will continue.
With a large amount of enthusiasm, Leslie and Kevin, along with a helper, will depart Minnesota around November first driving their handicapped van to Arizona. Look for pictures and updates soon!
Greetings Dear Freinds!
Friday the 17th was a long day…9am to 3pm doing the doctor thing.
Overall they say my decline is still slower than most.
Breathing capacity has declined from 74% last visit to 64% today. We knew this was a topic for discussion, after meeting with the pulmanary specialist last week and going through the sleep study. I will be using a BiPap and will be getting a hospital bed to keep me elevated more during the night.
Because my diaphram is weakening they suggested I get a feeding tube now. Placing me under anesthesia becomes more risky the lower my breathing capacity goes. My swallowing and talking have been affected very little. So, I don’t really need to use it all the time but will sometimes, to get more calories and conserve energy for things other than eating.
I will be getting a brace for my left foot, so I can walk easier without the risk of tripping. I have a portable wheelchair now for outings to conserve my energy, but I will be going to get fitted and begin the process for an electric chair next month.
We discussed resources for a ramp and bathroom remodel. Also talked about implementing Share the Care and Leslie will be working with a mentor from the ALS Association. Looking forward to talking and seeing those of you who visit soon.
Sorry about the frankness of this post but between having blessed times living and spending time with family and friends, the realities that ALS brings deserves to be shared too – Thanks for all your support.
Pinestone III was last night and was wonderful.
Thanks to all for the support and great party!
Will make a longer post w/in a day or two.
Look to my Facebook profile for more.
I’ve been visiting an old friend, Bob Wheelecor, out in the mountains outside of Salt Lake City. Is it ever beautiful out west here! This picture is of the end of the driveway of the log home we stayed in. If you look close at the left end of the driveway it’s apparent that there’s garbage day in the mountains too!
We put some pics of Pinestone Lodge on the site’s pics page. Will be home toward the weekend.
I’m working on making a lot of changes to my website to keep things current! So bear with me while these things change – please!
A lot has happened since my ALS diagnosis in July 2010. And my needs have changed greatly. I also have been blessed with some beautiful gifts ~ gifts of time, financial support, and gifts that have made some wonderful travel experiences possible.
The disease has progressed steadily. I’ve experienced weight loss, the loss of most of the use of my hands, much shallower respiratory function, among other changes. And it continues to progress.
I have had the good fortune to lessen the effect of how I experience many of the symptoms – like the cramping, aches & pains, and other muscular discomfort that go with the progression of ALS. And I’ll talk about that from time to time.
All for now…this will get revised or I’ll make another post. Have a look at my slideshow of pics, pretty cool stuff!