Volunteerism: Alive and Well

09 Monday Sep 2013

Posted by Ann Napoletan in Events, Inspiration, Ruminations

margmeadquote I was recently asked to write a post for VoiceQuilt on the topic of volunteering. Did you know that in 2009, the federal government designated September 11th as a National Day of Service and Remembrance? It’s really a lovely way to honor those who lost their lives in the horrible tragedy that shook our country on 9/11/2001. It also allows us to bring something positive to a day mired in sadness and loss.

Do you have any special plans with regard to 9/11? What are your favorite volunteer activities? Take a look at my post, Class in Session: Volunteering 101, for some ideas as well as information on the benefits of volunteering (you may find some of these surprising!).

You can also find out how VoiceQuilt can help you preserve memories in a very unique way!! Imagine having a high quality audio recording of your loved one telling a favorite story from years gone by – what a treasure! Or how about collecting recorded voice messages from family and friends and presenting it to someone in the early stages of Alzheimer’s?

flag_HI_2011 September 11th changed our country forever – in many mournful ways , but it’s also an excellent reminder that tomorrow is not promised. Preserve a memory, lend a hand, commit a random act of kindness – do something as a tribute to the victims of that horrific act that took place 12 years ago on a morning that started out like any other “normal” morning…

Remembering…

02 Monday Sep 2013

Posted by Ann Napoletan in 4M, Advocacy and Awareness, Behaviors, Eason House, End of Life Signs, Expectations, Heartland, Hospice, Mom, Ruminations, Uncategorized, Weight Loss

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alzheimers, dementia, end of life signs, hospice

It’s nearly impossible to believe a year has passed since Mom began her sharp and unexpectedly rapid decline at the hand of Alzheimer’s. It was about this time in 2012 that I realized scheduling a big vacation months in advance was a bad idea. At the time, though, things were “okay”… who knew what a difference one summer could make.

Praying for Comfort

There were fewer and fewer good days; she wasn’t eating – beginning to even turn her nose up at some of her favorite sweets – and was losing weight quickly. From that point on, her diet consisted primarily of Ensure until the end. Oh how excited we felt when she would eat a cracker or a couple of grapes; more than that and it was as though we’d hit the lottery, we were downright joyous!

photo-58 In those weeks, it was indescribably painful to see her so distraught; screaming, hitting her head, and often inconsolable. In the few rare peaceful moments she had, she would stare at the ceiling, entranced, with a soft smile on her face and eyes almost sparkling. There’s not a doubt in my mind it was the very beginning of her transition. As upsetting as it was, seeing her at peace like that was also an incredible relief, but those moments of respite never lasted long. All too soon, the terror she was obviously feeling would return.

Time For Hospice?

Finally, the time came where I knew I needed to make a decision. I called hospice to have them come out and do an assessment; unfortunately, we had a mind blowing, horrific experience with the intake nurse. I ended up asking her to leave before the process had been completed. On Monday, I called the office and told them to destroy the paperwork – I had changed my mind (there’s more to the story…).

It was the beginning of the final dizzying, nausea-inducing rollercoaster ride that lasted for the next 3 or so months. I thought I had seen it all, but I hadn’t seen anything yet…

Hopelessly Unpredictable Progression

So crazy to think earlier that same year I truly thought that she could easily live another 10 years or more. Physically, she was strong. But things can – and often do – change very rapidly where this disease is concerned.

Mom wasn’t done fighting, though. While she never bounced back to where she had been, she did turn things around one more time – for a short spell – before that final downward spiral. I went from being certain she only had weeks left to believing she might actually rebound; however, that was not the case. Amazing how your mind plays games, but with this disease, “rebound” is a very relative term…

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If you would like to help us raise awareness, research dollars, and funds to help families on this journey right now, visit Marilyn’s Mighty Memory Makers’ page to join the team or make a monetary donation. In just two weeks, we’ll be walking to #ENDALZ.

Early Diagnosis: Which Side Are You On?

26 Monday Aug 2013

Posted by Ann Napoletan in Advocacy and Awareness, Diagnosis, Early Onset, Research, Ruminations

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alzheimers, alzheimers research, diagnosis

beach-footprints 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?

Preclinical Diagnosis

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.

Younger Onset

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.

Clinical Trials and Support

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.