What a beautiful love story….
Full story can be found at: http://www.today.com/entertainment/man-96-enters-song-contest-pay-tribute-love-his-life-8C11004674
27 Tuesday Aug 2013
Posted in Inspiration
What a beautiful love story….
Full story can be found at: http://www.today.com/entertainment/man-96-enters-song-contest-pay-tribute-love-his-life-8C11004674
26 Monday Aug 2013
Posted in Advocacy and Awareness, Diagnosis, Early Onset, Research, Ruminations
One of the more controversial subjects surrounding Alzheimer’s is whether or not it makes sense to push for early diagnosis. After all, this is a disease with no cure and no proven treatment, right? So, what good could come of knowing sooner than later?
A study recently published in the Annals of Neurology has found a link between the amount of mitochondrial DNA in one’s spinal fluid and the likelihood of developing Alzheimer’s. The research shows that asymptomatic patients as well as those already experiencing symptoms have lower levels of mitochondrial DNA, and perhaps most important is the fact that this can be detected up to 10 years before symptoms appear.
Professor Ramon Trullas, head of the study being conducted at CSIC Institute of Biomedical Research at Barcelona, explains that these findings could lead to viable treatment options in the preclinical stages – something that simply doesn’t exist today.
The medical community believes that the sooner treatment begins, the more likely it is that symptoms can be controlled or delayed. Imagine receiving a younger onset diagnosis in your 40’s or 50’s. For those families, truly in the prime of their lives, a few years can make a significant difference not only in planning and preparation, but in the amount of quality time they have together.
Early diagnosis also allows patients to enter clinical trials much sooner, giving researchers an opportunity to study the brain in the earliest stages of the disease. The hope is that this early research will lead to treatments that can halt Alzheimer’s long before symptoms begin to manifest themselves.
Another important aspect of early diagnosis is that it gives families a chance to engage meaningful support from the very beginning. I believe that alone can be immensely helpful. With my mom, one of our greatest mistakes was allowing denial to take over.
I remember well how defensive she was; I never wanted to rock the boat, so we didn’t talk about it. Looking back, I think about how we could have handled things differently if we had faced reality at the first sign something was wrong. Building a support network would have been extremely beneficial.
At the end of the day, we all have to make our own choice. This is one of those situations where there’s really no right or wrong decision. Each of us is influenced by our own past experience, and although I had always been of the mind that I didn’t want to know, that changed as I watched my own mother slip away.
It will be interesting to see what happens over the next five years. Will insurance companies begin to cover PET scans and spinal taps to assist in the diagnosis of Alzheimer’s? If so, how many people will line up for the tests? Or will fear of becoming uninsurable force people to remain in the dark for as long as possible?
Lots of questions, not so many answers… I suppose only time will tell.
I would love to hear your opinions. Leave a comment to weigh in on whether or not you think early diagnosis of Alzheimer’s makes sense.
22 Thursday Aug 2013
Kudos to the Pat Summitt Foundation for putting together this free 50+ page publication on evaluating long-term care options.
Long-term care decisions are among the most difficult you will ever face, and unfortunately it’s often a “baptism by fire” situation. That was certainly the case for us; my mom had been in the hospital and I’ll never forget standing in the hallway, numb, as the OT, PT, and social worker told me she couldn’t go home. Living independently was no longer an option.
I shouldn’t have been caught off guard, but I was. Oh yes, I knew in my heart the day was coming, but I had buried my head deeply in the sand on the vast beach of denial. I didn’t know a darn thing about long-term care. Nothing.
So, with one week to find a facility and get Mom moved in, I dove in head first armed with — not much of anything. I had enlisted assistance from A Place For Mom, which helped immensely, but oh how I wish I’d had the Pat Summitt Foundation guide. This was all uncharted territory for me, and I learned as I went.
While it would be lovely if everyone had their heart in the right place, the bottom line is – well, the bottom line. It comes down to dollars and cents, sales, and monthly numbers. All too often, the focus is on keeping the building full regardless of whether or not the facility can provide adequate care to meet the needs of potential residents.
In fact, a recent Frontline exposé on Emeritus Senior Living points out that facilities sometimes even seek out advanced dementia cases. Why? Well, those residents require a higher level of care, which equates to a higher monthly payment. And after all, it IS all about the bottom line, isn’t it? The facility may not be equipped or staffed to handle the care, but somehow that becomes secondary to filling the building.
This is why it’s so very important to know exactly what to look for – and what to ask – when you’re evaluating options. The Summitt Foundation guide is divided into five chapters:
In addition, the e-booklet provides valuable interview guides specific to staffing, satisfaction surveys, chronic pain screening, and food service, as well as a worksheet for documenting observations. These comprehensive tools also include scoring guides and rationale to help you quantify your findings.
My nuggets of advice for families embarking on this journey: