Nov 1, 2013

What If Alzheimer's Had Never Come Into My Life?

I have heard some people express their pity that my youth was touched by Alzheimer’s. I, too, pity that my Great Grandmother had to suffer from this horrible disease. However, as for me, my contact with Alzheimer’s disease has made me who I am.

By +Max Wallack 
Alzheimer's Reading Room

What If Alzheimer's Had Never Come Into My Life?

A few days ago, Bob asked “What if Alzheimer’s had never come into your life.” Immediately, I knew it would take me a few days to think about that question!

If Alzheimer’s had never come into my life, I would not be me.

I know that is quite a statement, but I believe it is true.

I believe most of my character, my dreams, my goals and motivations are directly attributable to my experiences as a child caregiver.

My earliest memories of success are formed around various devices I invented to help my Great Grandmother. By the time I was eight, I had developed a sense of responsibility far beyond what was typical for my age. These responsibilities were not thrust upon me; they were responsibilities that I just naturally assumed as part of the care of a loved one.

How can a child listen to a loved great grandparent cry out in distress,

“I don’t even know who I am!” 

and not become an empathetic individual?

How can a child grow up seeing so many people suffering from this disease and not decide to devote oneself to alleviating this suffering?

I always hear people say, “Everything happens for a reason.” Well, I am quite certain my life and the lives of many people would have been very different if Alzheimer’s had never come into my life.

If I had never visited nursing homes, I would never have seen the feelings of success and calm that Alzheimer’s patients had while working on puzzles, and a half million patients would not have had access to over 26,000 puzzles.

If I had never learned how beneficial the care of Dr. Forester, Great Grams’s geriatric psychiatrist, was to my family, I might never have considered that profession.

I would never have been invited to become the youngest member of the American Association for Geriatric Psychiatry, and have the opportunity to participate in and present at their meetings.

Had I not founded PuzzlesToRemember, I might never have received an award from Build A Bear Workshop. When I donated that award to the Boston University Alzheimer’s Disease Center, I met some of the people I work with today.

Without that contact, how could a person my age be working in a research laboratory and publishing results in prestigious journals? How many people might be helped by our study of the relationship between ACE inhibitors and Alzheimer’s?

Our current work is even more promising. Might my early exposure to Alzheimer’s disease result in my being part of a discovery of something that really might help clear A Beta? It looks quite possible.

If Alzheimer’s had never come into my life how could I have met the extraordinary people that I have come to know?

I would never have met Bob, or the ARR. I wouldn’t have the opportunity to interact with the wonderful people on the ARR. I wouldn’t know Carole Larkin, or Lynda Everman, or Ann Napoletan, or Lori La Bey, people that have become very important in my life, people whose advice I trust and appreciate. And there are many more.

Just this week, I have been thinking a lot about my friends. I am impressed by my friends.

Because Alzheimer’s came into my life, I have been included in many events for young people involved in community service.

Because of this, I have many very extraordinary friends! Just this week, my friend MaryPat, age 15, received a national Peace Prize and her work was honored on the floor of the U.S. House of Representatives.

My friend, Katie, age 14, is the youngest ever recipient of Clinton’s Global Citizen Award for her efforts in feeding the homeless since she was 9.

My friend, Jenny, age 17, founded Bowling for Bears and has donated 13,000 teddy bears to hospitalized children during the December holidays.

My friend, Alec, age 18, has produced his own line of comic books that teach important lessons and, just today, released his latest comic “The Ghosts of Chone” just in time for Halloween.

My friend, Nick, age 15, has provided shoes to over 10,000 children in homeless shelters.

My friend, Emily, age 17, records singing grams that she sells and donates the money to John’s Hopkins Children’s Center to help children with peanut allergies.

And the list goes on and on.

Wouldn’t I be a very different person without these friends who all share my passion to make a difference?

People have asked me how long it took to write the book, “Why Did Grandma Put Her Underwear in the Refrigerator? An Explanation of Alzheimer’s Disease for Children.” From the time I decided to write the book, it took me only hours to produce a first draft. That’s because I had been writing the book inside my head for 7 to 10 years.

As time went by, I felt and greater and greater need to write something to help children understand Alzheimer’s disease, and yet, allay some of their fears while also providing them with some useful coping mechanisms. I

t is my hope that this book will eventually become part of a curriculum teaching young children about dementia.

The UK is already instituting such a curriculum.

I have heard some people express their pity that my youth was touched by Alzheimer’s. I, too, pity that my Great Grandmother had to suffer from this horrible disease. However, as for me, my contact with Alzheimer’s disease has made me who I am. I am proud to be the kind of person that the people I look up to want to have as a friend.

Who knows how many more people will have their lives affected because Great Grams had Alzheimer’s?

My hope is 35 million.

Max Wallack is a student at Boston University and a Research Intern in the Molecular Psychiatry and Aging Laboratory in the Department of Pharmacology and Experimental Therapeutics at Boston University School of Medicine.  His great grandmother, Gertrude, suffered from Alzheimer's disease. Max is the founder of  PUZZLES TO REMEMBER. PTR is a project that provides puzzles to nursing homes and veterans institutions that care for Alzheimer's and dementia patients.