Fierce Courage

It was about a year ago that I heard that legendary women's basketball coach Pat Summitt had been diagnosed with early onset Alzheimer's Disease.  I was stunned.  Not that she had the disease, but that it had been diagnosed at such an early age - 59.  Yes, better to be diagnosed early, and to have a good support system.  But how "bad" had the symptoms been to result in what must have been a series of appointments?  I can't imagine the fear or dread the family had to go through BEFORE a diagnosis that left little room for hope.

Ah, but I made the same mistake so many of Pat's basketball opponents made early on.  I underestimated her and her team.

You see, there is a huge difference between little room for hope and no hope.  Pat knows that.  In typical Pat fashion, she grabbed hold of that diagnosis, researched the heck out of it, and started searching for its weaknesses.  AND she continued to coach for her final season.

A message from Pat

Once I got past the shock and "unfairness" of Pat's diagnosis (as if it would be fair for anyone to have the disease??), I truly admired the spirit that made her the amazing coach for 38 years at the University of Tennessee, and which had her fighting back against Alzheimer's.  Pat and her son Tyler established the Pat Summit Foundation to raise funds for Alzheimer's research and education.  One of their items available in their on-line store was a pack of rubber wristbands in orange and purple with "FIERCE COURAGE" in purple print on the orange section and Pat's signature in orange on the purple section.  Purple is the color of Alzheimer's Awareness, and Orange is the University of Tennessee color.

Since Mom had already been diagnosed with dementia (although not Alzheimer's at this point), I found all of this a little more than disturbing.  And yet, I realized the truth of Fierce Courage being necessary to live with and/or fight Alzheimer's.  I ordered a pack of the wristbands, and gave Mom several of them to share with her friends at Friendship Village.  I have not taken mine off since I received the package.

I have also been educating myself on dementia/Alzheimer's.  The Alzheimer's Association is wonderful for providing information and support for caregivers.  I could go on and on with things I learned in a 4 week series they put on (first and foremost, get the power of attorney/medical power of attorney in place BEFORE there is an emergency; see a lawyer who specializes in elder law).  Alzheimer's is just one of the forms of dementia, but it is fatal.  Eerily, the longer one lives, the higher the probability of developing Alzheimer's.  YIKES.

I also stepped up (pun sort of intended here) and participated in the 2012 Walk to End Alzheimer's.  This is the first time I'd done the fundraising/walking thing and I was a little intimidated by it.  Thankfully I have wonderful friends who supported my efforts, and Mom has wonderful friends who donated to honor her.  I was thrilled when I started with a $300 goal and had 75% of it in just a few days; of course I had to increase my goal to $500.  I wasn't sure I was going to make that one, but I did!  As of today, I've officially raised $615 (although it's really $715 since one of the donors donated to the team, not through my fundraising link).  Because of all of the supportive people, I was able to get 2 t-shirts AND made it to the Champions Club (and received a medal!!).

These are just a few of the images from the walk on the 22nd.  That's Mom with the walker and her Friendship Village backpack (we probably did the 1 mile walk with all of the meandering we did).  We were more interested in checking out the buildings since our time at the park was limited.  Carillon Park is a very nice historical park, but usually there's a fee to go through it; since the walk was at the Park, they opened the majority of the exhibits for the walkers.

These flowers are more like pinwheels, and I wish I could remember what all of the different colors represented.  The blue indicates a person with dementia, purple indicates someone lost to Alzheimer's, and orange indicates a caregiver for someone with dementia.  You could write a message on the petals with a silver Sharpie if you wanted; Mom and I brought ours home.  I'll be putting mine out in the front yard, hopefully bringing a little more awareness for Alzheimer's.

Mom had been doing so well that I was pretty surprised this Wednesday when one of the nurses from Friendship Village gave me a call; that only happens when there's a problem, so I was immediately on high alert.  Mom had another TIA (transient ischemic attack, or mini-stroke) and was having trouble communicating.  At the time there was no way to know if it was a TIA or the onset of a full-blown stroke, so we erred on the side of caution and called to have Mom transported to the hospital.  After 3 hours in the ER, bloodwork, EKG, and CT scan all came back normal, and Mom had pretty much returned to normal.  She was back in her apartment before her bedtime, which I know had to make her feel better.

In our case, a TIA is probably the best diagnosis for what Mom went through.  TIAs typically don't leave lasting effects (although there is a type of dementia that exists when the same area is consistently the site of the mini-stroke) and resolves itself pretty quickly.  It is still a bit scary.  Mom was anxious and upset when she couldn't get the words out or find the right words.  Anxiety tends to exacerbate the symptoms.  So, I spent a little bit of time trying to make Mom laugh and relax.  Shortly before she was discharged, she asked me how they diagnose dehydration; I said that I didn't think there was a single test, but a combination of pieces of information and responses to questions.  Then I asked her if she thought that was what was going on, and she said that she thought it might have been a "contributing factor."  I knew at that point that she was doing much better because she had no trouble at all coming up with the phrase.

Fierce courage.  Patients with dementia definitely need it, but so do the caretakers.  Make no mistake, dealing with dementia and Alzheimer's is a war; some days you win the battle and some days you lose ground.  But with fierce courage, Mom and I together can give this insidious disease a run for its money.  I'm holding onto that with both hands in a death grip.