LBDA

May 2017 Lewy Digest

Colleen Marinello: A Change of Purpose and Perspective

I am a 55 year young lady, and I was diagnosed with LBD 3 years ago (my father also had LBD and passed away 4 years after his diagnosis). It was not what I had in my forecast!
As a mother and grandmother, my perspective of life changed to spending as much time with my loved ones. My first mission was to educate people - especially my family and friends. They need to know the symptoms, progression and what is down the road. Everyone has different symptoms that can come and go quickly.
My diagnosis seems to have been hardest on my daughter. I believe she is experiencing denial, but she disagrees - then again everyone deals with situations differently.
It’s not easy dealing with someone with LBD, please be patient and compassionate. It's not us, it's the disease and we have no control. There are times I feel like a little girl after an episode/situation has transpired. Treat me with respect and dignity, please.
I have spent months at a time with my daughter and 4 year old grandson. He has been my purpose. It has been a blessing to be able to pour into his life and make treasured memories with him.
I live every day to the fullest, and my perspective has changed. I now take time to enjoy every moment.
Happy Mother's Day,
Colleen aka Mimmy

A Son's Open Letter to His Mother

Dear Mom,
I write this as my first year at Boston University nears the end. It was an accomplishment made possible through your support, understanding during my uncertainty, and through that voice of reason you spoke during my struggles. You have always been my mother, and you refused to let the illness take that away from you. Your capacity for empathy has remained constant, and your love for your children unaffected. This undying love I will always remember.

During my first year at Boston, I often sat and thought of you two hundred miles west. I felt a sense of uselessness being so far away. It seemed as if you had worsened each time I returned home for a holiday—the result of some new symptom setting in. When we spoke on the phone, you did your best to conceal any new pain you felt, or further confusion in your mind. You raised the tone of your voice and laughed with me. You tried so hard—perhaps too hard—to ease the burden on everyone else.

Read his full story by clicking here.

As Mother's Day Approaches...

Honor your mom, or her memory, by making a gift to Lewy Body Dementia Association in her name.
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Celebrate the women who have made a lasting impact on your life by giving today.

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