Burns Night

For quite sometime I have been toying with the idea of writing a blog. My son and daughter-in-law have their own website for blogging, and my other daughter-in-law writes for the well read Boston Mom’s Blog, so the inspiration is great to add my name to this ever growing list of bloggers in my family! The reason I have chosen now to begin this blog is indeed our ever changing lives.  Life does not stand still, it marches on, whether we are ready for the changes of not. Sometimes we welcome life’s changes, sometimes not so much. Change can be good, as witnessed by the addition of my two daughter’s-in-law into our family; and with the blessed births of my two grandsons. Our family has been added to, but so has our family been diminished-having lost both my parents over the years has not been easy, but we remember each with loving stories through much laughter and occasional tears.

Once again our family is facing challenging changes ahead-this past winter my beloved husband of 38 years was diagnosed with a degenerative, debilitating disease known as Lewy Bodies with Dementia, or simply Lewy Body, as it is commonly referred to. This little known, rather unfamiliar disease was brought to light a few years back when  popular and much loved iconic comedian Robin Williams was found to have it. After suffering its devastating effects Williams took his own life. Williams was misdiagnosed as having Parkinson’s Disease, and indeed this disease falls under the Parkinsonian umbrella, but it is so much more than Parkinson’s Disease. Lewy Body has a dementia component that is often misdiagnosed as Alzheimer’s Disease in conjunction with Parkinson’s. Unfortunately one of the tougher elements of Lewy  Body is the fact that the same medications that work well for Parkinson’s patients does nothing for Lewy Body sufferers. Likewise with Alzheimer’s medications; incomprehensibly, they are ineffective with fighting off the heart wrenching attacks of dementia for those with Lewy Body. There are no known medications that work well in fighting off this crushing disease. Thus, my husband has agreed to be a participant in a brain disorder study at the world renowned Massachusetts General Hospital in Boston, in order to help future generations deal with this life shortening, horrific disease. Score one for research.

I will share my journey as a wife, partner, emotional supporter, and daily caregiver, to my husband as we forage the murky waters that the unknown world of Lewy  Bodies with Dementia has in store for us. Lest you think this blog will be all gloom and doom think again, as I am a positive person of strong Christian faith, and will share the ups as well as the downs. The intensely positive aspect of our life is the continued strength, love, and commitment my husband and myself are blessed with each new day by those around us-our children and their spouses, and especially the innocence and ceaseless love of our  young grandsons, and our many caring friends, who truly exemplify the epitome of “Let me know what I can do to help,” as help they do.

Now a word about the name…modernmimi2 is reference to the name my three year old grandson gave me when he was old enough to talk; and I thought I was going to be called “Grammie”! I should have know better…kids will call their  grandparents what they will. I am ok with Mimi. In fact, I have rather has grown accustomed to it, and when my grandson could say Grammie, we  decided together one day as he struggled with calling me by that very title, that Mimi fit me best. So Mimi it is, and fyi, grandpa is actually “Papa”. He loves it too. Modern? Current times….2? Why two grandkids, of course. So thank you for letting me share a bit of my story and this life changing journey with you. Till the next time, this is Modernmimi2 wishing you life’s simple pleasures with grace and dignity.