Hello TeamJon Team Mates,
I hope that everyone had a wonderful Thanksgiving and that your holiday celebrations are shaping up to be very merry and bright. I wanted to share with everyone the current news regarding Jon's medical condition and what we've been up to over the past months...
This was a busy, and frequently hectic, summer for Jon and I. As I reported in the last newsletter, Jon had recently been placed into a skilled nursing facility in the picturesque town of Snohomish, Washington. Since that time, Jon has continued to settle into his new digs and is successfully adapting to the culture and pacing of life in a nursing home. In fact, he was recently elected by his fellow residents to be President of the Resident Council.
Jon has also gained a roommate in form of a Betta fish named Manolo, which was a very thoughful gift from a staff member at the facility. Jon has reported that he and Manolo enjoy each others company and seem to have a shared interest in watching television, (especially Science Fiction).
For my part, I completed the downsizing and storage of our household in early October and I am now living with our good friends, Mark and Nik, in Seattle. With much gratitude for their extraordinary generosity, I'm settling into my new home very nicely!
TeamJon Joined in the Seattle "Walk to Defeat ALS" for a Second Year
It was a beautiful day for a lovely walk with wonderful friends for a worthy cause! My very heartfelt thanks to our TeamJon walkers, starting in the back from left to right: Nik, Me, Elaine, Dennis, and in front: Mark, my wonderful husband, Jon (in the chair) and Joseph! We nearly doubled the size of TeamJon's contingent in this year's Seattle "Walk to Defeat ALS", that was held on Saturday, September 10th.
To learn more about the local chapter of the ALS Association and the valuable work that they perform, please visit their website at: www.alsa-ec.org
Jon's Medical Update
Perhaps the biggest medical change for Jon over the last several months has been the need for placement of a gastric feeding tube in September. After a bit of a rough patch for the first couple months due to clogged tubes that required multiple trips to the Emergency Room and several replacements of the tube, the current tube has been working well for more than a month. Jon now receives about 2/3 of his nutrition through tube feeding. Regular, 'pleasure' eating, accounts for the balance of his calories.
In other medical news, Jon is scheduled to see a neuro-geneticist to undergo a series of tests in January. The hope is that the genetic tests will help identify the specific form of Motor-Neuron Disease that Jon is afflicted with. One of the greatest frustrations about MND's, is the overwhelming number of them and the difficulty in conclusively diagnosing which one a patient has. Most have very similar symptoms as well as treatments. Although patients do not recover from MND's, there are significant differences in the expected timeframe and progression of the various diseases. A successful diagnosis can take years to accomplish, and our hope is that the upcoming tests will help move Jon closer to one.
Jon has also been working to train speech assistance software to respond with his natural voice. The software suite, AAC Essentials, was purchased with the generous support of a TeamJon member who saw it listed on Jon's wishlist in the last newsletter. Training the suite to work with a patient's own voice, (rather than a 'Hawking-like' voice), can take a great deal of time and work, and needs to be accomplished prior to a patient's total dependence upon the device. Thankfully, because of a TeamJon member's generosity, Jon has the time to complete this task!
November is " Family Caregiver Awareness Month"
Although November is winding down to its final few hours, I wanted to note that this month is 'National Family Caregivers Month'. Celebrated each November, this is a time to recognize and honor family caregivers across the country.
"Family members, friends, and neighbors devote countless hours to providing care to their relatives or loved ones. During National Family Caregivers Month, we recognize and thank the humble heroes who do so much to keep our families and communities strong."
President Barack Obama, NFC Month Proclamation 2012
According to a recent AARP study, 40 million American family caregivers provided a staggering 37 billion hours of care to spouses, parents, children and other loved ones in 2013 - worth an estimated economic value of $470 billion! This surpassed the total annual spending for Medicaid, ($449 billion) and roughly equaled the annual sales of Apple, HP, IBM and Microsoft combined.
Celebrating Family Caregivers during NFC month enables all of us to:
- Raise awareness of family caregiver issues
- Celebrate the efforts of family caregivers
- Educate family caregivers about self-identification
- Increase support for family caregivers
As a family caregiver myself, I can say that, while it is a labor of love and very fulfilling, it is also one of the most physically, emotionally and financially challenging things I have ever undertaken. In honor of Family Caregiver Month, be sure to take the opportunity to thank the family caregivers you know for their service!
Calling All Musicians - TeamJon is creating a Music Project!
As I related in the last newsletter, an upcoming project in 2017 is to undertake a CD music project to benefit Jon's Special Needs Trust. With the working title of the "House Blend Anthology"; this CD is the first volume, of what I hope will be a series of CD projects to benefit Jon's Special Needs Trust (SNT) and other select charities.
In addition to donating to a national association for Motor Neuron Disease yet to be determined, a portion of the proceeds from this first CD will benefit the work of the Family Caregiver Project. These proceeds will assist in expanding educational and lobbying efforts promoting policies in Medicaid programs throughout the U.S. that conserves family caregivers as a resource, improves client health outcomes, and reduces the financial risk of vulnerable families.
Of course, a big goal of this music project is to help give increased exposure to the creative talents of emerging musical artists! So, an integral part of the project is that it be an ecclective collection of musical talents. The theme for this first CD is: 'contemporary instrumental' and can be either solo or ensemble. So, if you know of a musician(s) that might be interested in participating in the House Blend project, please let me know, or have them contct me at: alan@TeamJon.org
I've been asked by a few folks if, in addition to making a general donation to Jon's SNT, there were particular items that Jon needed or wanted that they could contribute toward. So, in order to assist anyone wanting to donate toward a specific item, I'm publishing a "wishlist" of items that Jon currently needs or wants.
- NEMO Fillo Backpacking Pillow - A compressible pillow that can travel with my wheelchair for naps. REI - $39.99. Click here for product page.
- Pro Club Fleece Cargo Sweatpants - Size XL, Gray, Black, or Tan. Amazon, $24.99. Click here for product page.
- Keurig Thermal Carafe - One thing that Jon has missed most since moving into the nursing home is good coffee, (they only serve instant coffee in warm water...) so, he's getting a Keurig for Christmas. A thermal carafe would be a great addition! Click here for product page.
- Amazon or iTunes Giftcards - These are always a wonderful and welcomed gift for Jon as they allow him the opportunity to purchase small items, music, games or movies when he comes across something that he would really like.
As the days shorten and winter approaches, it is fitting that we reflect on the multitude of blessings that we each have been given in the preceding year. Among our greatest blessings, Jon and I count our circle of wonderful and loving family & friends. Thank you for your continual care and encouragement throughout the year and please accept our best wishes for a very warm & serene holiday season and a happy & prosperous new year!
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