Tonight's picture was taken in February of 2009. I remember this moment in time, like it were yesterday! Pictured with me and Mattie, was Jenny. Jenny was one of Mattie's extraordinary art therapists. I was introduced to Jenny in week one of Mattie's care at the hospital and frankly neither Mattie nor I would have made it without her presence in our life. That day, Mattie was getting admitted to the hospital, however, his admission occurred through the out-patient clinic. Jenny was escorting us to the clinic but on the way Mattie wanted his wheelchair to go flying down the ramp in front of us. Naturally there was NO WAY I was going to let go of his wheelchair, but we wanted to give Mattie that feeling of freedom and zooming down a hill. So we ran down the ramp, holding onto his chair!!! We were such a sight that you can see the woman behind us was watching and smiling! Mattie's care team always helped us create "normal," non-cancerous moment, which have now become part of Mattie's legacy.
Quote of the day: It is an absolute human certainty that no one can know his own beauty or perceive a sense of his own worth until it has been reflected back to him in the mirror of another loving, caring human being. ~ John Joseph Powell
Today this article, ASU researchers propose a unifying explanation for molecular chaos driving Alzheimer's disease, popped up in my news feed. No surprise as I am always looking into the latest research and findings on Alzheimer's disease. Caring for someone with a progressive cognitive disease is actually very challenging and it requires inordinate patience and compassion. Not to mention energy. It is hard to believe, that in the age of modern medicine, there is still no drugs on the market to stop the progression or cure the disease. I am not sure why this surprises me, considering the lack of attention and effective medications to treat childhood cancer. In so many ways our society has failed our young and our older adults with chronic diseases.
This study highlights 'stress granules,' which are structures that form temporarily in response to cell stress, helping to pause nonessential processes while the cell recovers. Normally, they protect the cell during stressful conditions and dissolve once the stress subsides.
In Alzheimer's disease, however, these granules persist abnormally and become chronic and pathological, trapping vital molecules and hampering their movements into and out of the cell nucleus. Instead of providing protection, they cause harm and contribute to the disease's progression.
What I love about this study is researchers have uncovered a transformative new approach to a possible intervention. If the formation of these stress granules can be altered this could have ramifications on halting or delaying the onset of symptoms. That would be miraculous because we certainly know very little can assist an Alzheimer's patient who is actually symptomatic and has both brain amyloid plaques (which are clumps of misfolded proteins that accumulate between neurons and disrupt cell communication) and tau tangles (twisted fibers of a protein that build up inside neurons, impairing their function and ultimately leading to cell death).
Here are some interesting facts from the Alzheimer's Association:
- Each year, a family spends, on average, more than $10,000 to pay the out-of-pocket health and long-term care costs of a senior with Alzheimer’s or another dementia. This is more than four times greater than the average annual out-of-pocket costs of seniors without dementia.
- In the last five years of the life of a person with dementia, family out-of-pocket health care spending totals nearly $87,000 — more than twice as high as for a person with cancer and nearly 75% higher than for a person with heart disease.
- More than half of caregivers report high or very high levels of emotional stress, and more than 1 in 3 report high or very high levels of physical stress.
- One in 5 care contributors cuts back on his or her own doctor visits, and 1 in 9 do not always buy the medications needed for themselves.
- Among Alzheimer’s caregivers, 74% report they are somewhat to very concerned about maintaining their own health since becoming a caregiver.
- More than 1 in 3 Alzheimer’s caregivers say their health has gotten worse due to their care responsibilities — compared with only 19% of nondementia caregivers.
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