I hope that everyone had a wonderful Thanksgiving and that your preparations for a festive celebration of the upcoming holidays are coming together well. As the Winter solstice approaches with the promise of lengthening days and returning life, it is appropriate that we take time to reflect on the year nearly gone and the hopes for the one awaiting us.
This has been an incredible and challenging year for Jon and I. Despite Jon's dynamic and complex medical condition, we are fortunate to count our many blessings. Chief among those are our wonderful, growing circle of family, friends and supporters. Also, over the last several months, progress has been made in diagnosing several of Jon's most perplexing conditions, and we are hopeful that more useful treatments will be forthcoming in the near future.
Jon's Medical Update
This past month was a busy one for Jon and I wanted to share some of our news. In addition to hanging our holiday decorations, Jon's been through a flurry of important medical appointments and procedures.
Most notably, after more than a year of trying to schedule an appointment, Jon was able to be evaluated by one of the leading ALS medical experts in the Northwest. Based on his examination and review of Jon's medical history, he believes that Jon's underlying condition may be Mitochondrial Disease. This is the first time that this possibility has been suggested as an explanation for Jon's diverse conditions.
About Mitochondrial Disease
According to several medical websites, Mitochondrial Disease results from failure of the mitochondria. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. Mitochondrial diseases are a broad family of chronic, genetic disorders that occur when the mitochondria within the cells fail to produce enough energy for cell or organ function. When they fail, insufficient energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised.
Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection. It is estimated that 1 in 4,000 people has Mitochondrial Disease. It’s progressive and there is no cure.
Other Medical News...
As many know, Jon has been suffering from a very painful and disabling abdominal condition since May, 2014. The underlying cause of this medical problem is not well understood and has been poorly diagnosed. About a month ago, Jon underwent a diagnostic procedure known as a "Parasympathetic Nerve Block". Its purpose was to determine whether Jon's abdominal pain could be controlled by blocking the sensory nerves that serve that section of his abdomen.
This initial block was considered 'short term' and would provide only a few hours of pain relief. Fortunately, this test was successful, and Jon underwent a long-term Nerve Block on Friday that should provide him with extended pain relief for potentially a 3-4 month period. In the more than a day since the procedure, Jon has been pain free (from this condition at least) for the first time in more than a year and a half. It's still to early to know how long this procedure will help him, but everyone please keep your fingers crossed...!
Spousal Caregiver Pay Project Update
As I reported in the previous newsletter, Jon and I have been working to abolish the current DSHS rule prohibiting compensation to spousal and parental caregivers. (For a fuller description of the issue in the last newsletter, click here.)
Earlier this year we met with several ranking DSHS administrators to discuss this issue and opportunities to change this policy. At that time, DSHS officials expressed a tentative interest in changing the existing rule to allow spouses and parents to be paid to provide in-home care for their loved one. As a first step in that process, they committed to developing a proposal to create a pilot program. This proposal was to be submitted to the Legislature in the upcoming session for approval, with implementation slated for later in 2016. Unfortunately, DSHS never fully developed the proposal and now does not plan to submit it for Legislative approval in this session.
This issue is simply too vital to the security of thousands of vulnerable families across the state to allow another year to pass because of DSHS inaction. Earlier this year, Jon and I started a non-profit organization, the Family Caregiver Project, to educate and organize around this issue. Over the next few months we hope to undertake a campaign that will raise awareness of this issue among the public, the media, legislators and other public policy officials, with the goal of securing legislative approval for a pilot program. This is going to be a big undertaking, and to be successful, we are going to need the help of others who are concerned about the security of the vulnerable disabled and their families. Many skills are needed, so consider this an open invitation/plea to volunteer and help us accomplish this valuable work! For further information, please email me at: Alan@FamilyCareProject.org
TeamJon Crowdfunding Campaign Update
Since the last newsletter, the TeamJon campaign has been blessed with several extraordinarily generous donations, including one anonymous donation of $1,000! These amazing donations will allow us to purchase some much needed medical supplies and OTC medications for Jon and pay some overdue and ongoing household expenses. Perhaps the greatest gift however, is the feeling of being able to breath for a bit. It's an odd feeling when you realize that some little part of you has been holding your breath, until the pressure is released and you exhale. The generosity of support, encouragement and love that everyone has shown us is so greatly appreciated and beyond our words to adequately express. All I can say on behalf of Jon and I is a simple "thank you"...!
The need to share Jon's story and build his community of supporters is as important as ever as we continue to battle this destructive State Rule. Please help us by sharing this Newsletter with your community of family and friends. The link to this newsletter can be found by clicking for the online version at:
Current TeamJon Newsletter
If you are on Facebook, please "Like" and "Share" the TeamJon Facebook page, and encourage your friends and followers to visit the page at:
Also, please help us spread the word about Jon's crowdfunding campaign by inviting your family and friends to visit the TeamJon GoFundMe page at:
On behalf of both Jon and I, thanks to everyone for your continued love, encouragement and support. We wish everyone a very merry and peaceful Holiday season!