Notes from our Readers

The energy and love placed into this book is a wonderful testament to a loving and great man. As is the eternal truth, love and energy are never wasted - in this book a piece of that love and energy is given as a gift to the reader to learn and understand frontotemporal dementia (FTD).

To the potential buyer I might suggest this book is important for at least 2 categories of individuals - immediate family caregivers and those healthcare providers -- such as a therapist, nurse and doctor - who may diagnosis and provide primary and secondary care to dementia patients. It's especially useful if dealing with a pre-senile dementia -- such one as perplexing as Bob's diagnosis of frontotemporal dementia.

If you are a healthcare professional you can learn about a disease state by reading a condensed and emotionally sterile book such as the Merck Manual (and I doubt that you'll remember anything substantial by reading the Merck Manual cover to cover) or you can read a story to really place a face on the disease. The choice is yours but the latter, in my opinion is the superior way to learn. After reading An Evolution of Love the healthcare provider has not only increased their knowledge but they have also increased their compassion toward the patient and the family of those affected.

As a caregiver, if your loved one is afflicted with FTD then might I suggest you buy a copy for your library and buy an extra copy to pass along to family -- this book fully documents the stresses on the family of the disease's seemingly inevitable latent diagnosis. It also explains FTD unusual changes to loved-one's personality - changes which make you wonder `is it something I did' -- you realize are cause by this insidious disease. You will also learn that care demands patience and a mastery of redirection to manage the day-to-day issues. Lastly you learn that you are not all alone when you have to make the most difficult decisions such as when to transition from home-care to assisted living.

Finally thank you Bob for making the world a brighter place to live -- your care and love of your family during your lifetime does not go unnoticed in this book and in those who survived you.

I hope they have Skittles and great music in heaven.

PS. It is worthy to note that by purchasing An Evolution of Love Georgetown Publishing will make a donation to the Association for FTD.

Peter M

I just completed reading your book. Thank you for sharing your journey with Bob. My wife Sandy developed FTD in 2007 age 58 (first symptoms we noticed). Along with  FTD Sandy also developed ALS which I understand can happen rarely. Sandy died July 14, 2010.

 

Your descriptions of the events, feelings and coping were so much like the road we traveled with Sandy. My daughter and I became each other's rock then and now as we grieve our loss of such a wonderful wife and mother at so young an age.

 

I appreciated your concept of the "Old Bob" and the "New Bob" and the fact that this terrible disease effects are behavioral as opposed to memory loss etc that so many associate with dementia. Also your comments on even the medical community not fully grasping the disease at first as they have difficulty understanding dementia in a younger person.

Sandy did not have to be placed in a care facility but that was definitely on the horizon. The ALS developed and Sandy died at home under hospice care. I am thankful I did not have to go through what you did in having to move Bob away from home. Reading that was heart wrenching.

 

I also experienced Sandy not dying until I left her bedside.Just like Bob, Sandy  would not go until my daughter, Beth, said "Dad you have to leave and go to another room so Mom will go" I did and Sandy left us 10 minutes later.

 

Thank you for writing this book that expresses so clearly what FTD is and the journey that must be traveled if it enters our lives.

Mark H

Hello Marie, Unfortunately my 60 year old husband has finally been diagnosed. I have had your book for several months and want you to know that your Bob and my husband (and our families) have followed the exact same path to this terrible disease.
 

I want to thank you for writing this very informative book. I have several books on FTD but none have helped me to understand what was happening to my husband like your book.
 

I pray everyday that my husband will not suffer the many terrible indignities that this disease could bring. As much as I already miss him, I do not want him to suffer.
 

Again, thank you.

Thelma

Michelle,

 

I loved the book and was so grateful that I found it on Amazon. I bought it yesterday and read it last night.

 

Thank you so much for writing to me. I truly appreciate it and sometimes I feel so alone in this journey.

Debbie

I just found your book online and will be purchasing it. My husband is 45 and is being “watched” for bvFTD. This is by far the most isolating and difficult thing that I have ever experienced. Our family doesn’t understand, we don’t have kids and he has pushed everyone away, this leaves his care to me. I am desperately seeking ways to network and stay sane. Any suggestions would be hugely appreciated…Thanks so much for your time and I have so much respect for you. 

Alison

I read (An ) Evolution of Love. I wanted to say what a wonderful story. My father also has FTD and it is very hard. I don't know how you guys dealt with such a tragic thing.

Kris

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