Wednesday, February 19, 2014

Helpline is Just a Phone Call

Dear Friends,

Every day, all day we [at the Alzheimer's Association] talk about our 24/7 Helpline (800.272.3900). I literally just finished writing an oped and included a part about our 24/7 Helpline. But, if you don't work for the Association and are not on our Board of Directors do you know what we mean? I am sure you are rolling your eyes, yea yea it is a call-in service if you need help.

Well, sort of. I try to put myself in our constituent shoes - would I attend a support group? What would get me to an advocacy day? Would I call an 800# for help? For some reason the last question has been top of mind lately.

Our Helpline is truly just a phone call. It isn't a process or an application, there are no qualifying questions or information we will demand from you, and it is FREE! All you have to do is pick up the phone. You don't even have to have a question. To be perfectly honest, a large majority of our Helpline calls start out that way - we just found out someone we love has Alzheimer's and we don't know where to start.

So, to help you understand why calling our Helpline is so important for anyone you know facing Alzheimer's disease I thought I would put together a list of a few of our most common questions:

  • We just received a diagnosis, what now? 
  • There is something happening with my loved one, is it Alzheimer's? And what is the diagnosis process?
  • We need  professional caregivers, where can we find help?
  • I think it is time for a nursing home, how? 
  • My loved one refuses to bathe, I don't know what to do?
  • Last week my loved one left the house and we couldn't find her for an hour - how can we keep her safe?
  • I am tired and stressed out, I just needed to say that out loud to someone.
  • She is seeing spiders on the wall and gets really angry when I tell her there aren't spiders on the wall. 
  • I want more information about clinical trials.
  • Caregiving is lonely.
  • I have early-stage Alzheimer's what can we do to get my family ready?
  • How do I talk to my boss about being a caregiver?
While that is a pretty short list of questions we answer on any given day, I hope it gives you an idea of the help available. Our 24/7 Helpline is a safe and confidential service to help through your journey with Alzheimer's. We are here to help,24/7. 

  • THIS Friday, our staff is meeting to plan out our goals and plan for Walk to End Alzheimer's. Have something that you would love to see a part of Walk? Email us at
  • COMMUNITY WORKSHOP! We are hosting community workshops in our Charleston and Parkersburg offices next week, click here for details!  
  • VOTE NOW! Our celebrity dancers are hard at work preparing for Dancing Through Time on March 22 - you can vote online for your favorite dancing duo! Click here to vote or buy tickets to attend the event! 
True Love is Creme Brulee
So, I don't know how to do the symbols to make the official spelling of creme brulee. Very quickly after W and I started dating I learned this is is FAVORITE dessert. So, I very quickly started practicing. I think I am pretty happy with my recipe to date, although every few months I tweak a little closer to perfection. So, here is my version of W's favorite dessert. (This is the every day version with vanilla extract, want to get fancy? Go for vanilla beans) (depending on ramekin size, serves 6)

  • 1 pint heavy cream
  • 1/2 tbs. vanilla extract
  • 1/2 c. sugar
  • 3 egg yolks
Directions: Pour heavy cream and vanilla into sauce pan and heat over medium heat, stirring constantly. Once it begins to bubble remove from heat and allow to cool for 15 minutes. In the mean time whip together sugar and eggs until the mixture is a bright sunny yellow. After the cream and vanilla mixture cools, slowly pour into the egg mixture while whipping with a hand blender or kitchen aid mixer. Be careful not to scramble your eggs. Whip the mixture together until all is combined and there is a layer of foam on top. Place your ramekins in a baking dish, pour the egg/cream mixture evenly into ramekins. Fill the baking dish with hot water so the water comes halfway up the sides. Bake at 325 for 40 minutes or they are just a little jiggly in the middle. Allow them to cool in the fridge for at least 2 hours. When you are ready to serve coat the top of the creme brulee with a thin layer of sugar and either place under the broiler for 5 minutes at high heat or torch with a kitchen burner (this is W's job!) Then dive in for a spoonful of love! 

Until next week,
Laurel K.

Monday, February 10, 2014

Bringing Clinical Trials to the 21st Century

Dear Friends,
W and I went to see Dallas Buyer's Club, we were both intrigued by Matthew McConaughey's Golden Globe win.

After 10 minutes of ugly cry in the dark theater after the movie was over, W leaned over and said, LK it is ok, don't cry - HIV/AIDS isn't a death sentence anymore.

Selfishly, my tears were not for those suffering with AIDS, but for the thousands that I serve every day.

Alzheimer's is still a death sentence.

McConaughey's depiction of a man fighting the blackness of death was masterful. His fear, anger, pain, confusion and desperation was palpable.

Many have made parallels between the Alzheimer's and HIV/AIDS movements. I started to write at length about the HIV/AIDS advocacy movement - which has resulted in BILLIONS annually in disease specific research through NIH.

But one thing from the movie that I can't get off my mind are clinical trials.

The movie is set in the mid-late 1980's, and it dawned on me that public perception of clinical trials has changed very little since that time, despite dramatic changes in the industry.

Our advocacy and fundraising efforts to fund and support clinical trials and research will only go so far without participants. There are opportunities for healthy volunteers, caregivers, and individuals at all stages of Alzheimer's and dementia.

Last week during our annual Leadership Summit we learned about a number of clinical trials, including a prevention trial that needs to screen 10,000 individuals in order to glean 1,000. That is Alzheimer's prevention, it is difficult to convey enough excitement about this landmark study and others like it.

In Dallas Buyer's Club,  McConaughey happens to stumble into a hospital participating in a particular drug study. I can not emphasize enough, this is no longer the reality. To get matched to a clinical trial, all you need now is a computer or phone. Hello, we are in the 21st century - just like everything else - the power is in our own hands.

Alzheimer's Association TrialMatch, is a first of its kind clinical trial matching system - that connects willing volunteers to open and enrolling clinical trials. You may not be matched immediately, however, you never know when you will be needed.

Start a profile here ==>

From FDA Phase III fast track, to patient advocates sitting on FDA advisory councils, to world wide collaborations filling in the gaps of federal funding. It is time to come out of the 80's and take control of our participation in clinical trials.

You have one of the greatest Alzheimer's research tools at the tip of your fingers, for more information visit


  • Early-Stage Alzheimer's: In March we will offer the Living with Alzheimer's series for individuals in the early-stage of Alzheimer's and their caregivers. The programs will be hosted in Charleston, Parkersburg, & Martinsburg. 
  • Advocacy Day: Join us February 18 for our last Advocacy Day at the WV Capitol. For more information call 800.272.3900 or email
  • Upcoming Community Workshops: Attend a community workshop! Click here to see a list. 
  • Walk to End Alzheimer's Planning Committees: Love Walk to End Alzheimer's? Love organizing events? We need you! Join one of our planning committees, for more information call 800.272.3900 or email
  • If you could do one thing from sunrise to sunset, what would it be? 
Never Use a Box Brownie Mix Again
It is Valentine's Day! Nothing says I love you like, rich delicious brownies. And these take the cake! While I can't promise you will never use a box again - but this recipe is so easy, you might not! 

I didn't change a single thing, so for the recipe I will just send you to the goddess of all home cooking, the Pioneer Woman's website! Click here for this delicious and amazing recipe! 

Until next week, 
Laurel K. 

Monday, February 3, 2014

You Better Redneckognize

Dear Friends,
<== This.

Last week I was exhausted, I completely forgot to call my wedding coordinator to finalize our date, was so angry at W I didn't speak to him for 2 days (for what I am really not sure), cried three times for no reason, slept maybe five hours the whole week, I could literally feel my irritability, and didn't seem to check anything off my to do list.

Then, Friday afternoon two things happened nearly simultaneously: 

2. I received this email from a long-time gal pal =>

I literally stopped and laughed out loud. LK, you are STRESSED! I could check off nearly every one of the symptoms of caregiver stress, but because I was so immersed in my bubble of stress - I couldn't recognize what was happening to my brain. 

It dawned on me that maybe our semantics around "caregiver stress" are wrong. What if you don't self-identify as a caregiver?

So many people come up to us at various events as say, "It wasn't until many years later that I realized I was a caregiver. I didn't know to reach out for help, because I didn't think of myself as a caregiver."

Does recognizing you are stressed out solve your problems? NO WAY! 

Does recognizing your stress help you cope with everything that is going on in life? YOU BETCHA!

Friday afternoon I was able to take a deep breath, clear my head of all of the gunk that was feeding my stressed out brain and tackle the things I could control and release the things that I couldn't. 

So don't miss the message just because you don't think you are a caregiver. 

Caregiver Stress = STRESS



  • Sweetheart Luncheons: The Charleston and Parkersburg Early-Stage Alzheimer's groups are hosting Sweetheart Luncheons on Tuesday. This is a great opportunity to get connected to this supportive group of people! For more information call, 800.272.3900
  • Advocacy Days: Add your VOICE! We need your help, we have two advocacy days left: February 5 and February 18! Click here to RSVP!
  • Employment Opportunity: We are adding two new positions to our staff, click here for more information.
  • Looking for our next Community Workshop? Click here!
  • Regional OHFLAC Dementia Training: We will host Alzheimer's Disease: The Basics of Best Care in Morgantown and Charleston. This training meets the OHFLAC 2-hour dementia training regulation for long-term care facilities. For more information call, 800.272.3900 or email
Game Day Bacon Wrapped Venison 
A friend that we tailgate with makes these delicious little devils every game-day weekend. So when a package of venison tenderloin tumbled out of W's over-stuffed freezer and landed, painfully, on my foot on Sunday - it was like a sign from heaven.

You can sub in beef (stew or stir fry cut) if you don't have venison on hand. The venison is cut into "jerky" strips (processor word not mine!). The key to this recipe is the marinade. If you have time to marinate overnight, that is best - but if not 2 hours at least. 

For the marinade (approximations, feel free to add or take away):
  • 3-4 tbs of olive oil
  • 3/4 cup of soy sauce
  • 1/4 cup of Rice Wine Vinegar or white wine
  • 1 tbs brown sugar
  • 1-2 tbs sriracha or other chili sauce
  • 1 tbs ginger
  • 2 cloves of garlic
  • 2 cups of water
  • dab of Dale's Sauce
Place the meat and the above ingredients into a gallon size bag, then place in the fridge over night. Soak toothpicks in water. Cut your bacon in half. To prepare: roll a strip of tenderloin into a ball (like a fruit roll up), take a piece of bacon and wrap around the tenderloin, then poke a toothpick through to hold. Bake at 450 for 10-15 minutes or until cooked all the way through and the bacon is crispy. You can also prepare in a hot skillet, but it gets a little smokey - which is not idea for friends coming over to watch the big game. 

Devour while you watch your life-long favorite team get completely destroyed in the biggest game of the year. Maybe next year Broncos. :......(

Until Next Week! 
Laurel K.