Amazon Customer Review: An endearing and useful read!

12/22/2012 -

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 Association for FTD.

PeterInPA 
http://www.amazon.com/review/R1J1ELYINQ8PS/ref=cm_sw_em_r_asr_onQpE.1XHMHW8_r

Just read the book

3/4/12 -

Marie and Michelle,

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 the 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.

May God bless you and your family,

Mark H

Wonderful Story

8/31/2011 -

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

Added to ADEAR Center's Online Database!

6/24/2011

Hello Michelle and Marie,

This is to let you know a preliminary database record has been cataloged of your book, “An Evolution of Love,” in the ADEAR Center’s database. You can search for it online at http://adlib.alzheimers.org/adear/alzdb/fullrec.aspx?id=11866. This book is in a batch of items that will go to our abstractor in 4 weeks, and she will write an abstract, select audience codes and subject codes.

Thank you very much for sending ADEAR a copy of your book. We greatly appreciate having a copy for our online database viewers.  It is a moving account of your family’s personal experience caring for Bob as he went through this debilitating disease, and good to see that you have included some special memories of life with him before FTD struck.

Warm regards,

Trammell Maury, Librarian

NIA ADEAR Center /Project/JBS International, Inc.

Loved Your Book

5/4/2011

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

Seeking Support

4/26/2011

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

An Evolution of Love

3/19/2011

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

Your book

2/4/2011

Greetings, I belong to the North Penn Area Support Group for Alzheimer's. My husband was first diagnosed with Alzheimer's then Aphasia, then Frontal lobe Dementia.

Your book was a total inspiration to me. I cried because I know how you felt in so many situations. Behaviour is really a problem with my husband and also he cannot process any language, He can not understand anything that I say and he can only say one phrase. I have no idea what that phrase means because he says it for everything.

I read the book in one day, and totally understood your feelings. You and your daughter were wonderful caregivers and I so admire you.

Once again thank you for writing the book and God Bless You and your daughter.

Your book

3/30/2009

Hi,

I just finished reading the story about Bob Sykes and was overwhelmed with relief that I am not the only one living with a spouse that is suffering from FTD, in addition to ALS. Last July my husband (age 45) was officially diagnosed with ALS following a number of tests (similar to FTD testing) and when I started to research ALS on the internet, I was overcome with relief when I learned that my husband's strange behavior that he had been exhibiting for quite some time, was due to a cognitive component of ALS known as FTD. Since last summer, it seems my husband's FTD has progressed more noticeably then his physical deterioration with ALS. Because of his cognitive decline, he "retired" from his career of 25+ years with BMW automobiles and now spends a few hours each day volunteering in the library at my daughter's elementary school. Other than his volunteering, he does not have a daily routine with the exception of emptying the household trash cans!

I would like to thank Marie and her daughter, Michelle, for relaying their memories of Bob and the very difficult trials they experienced along the way. It was so comforting to know that there are others out there that have or are, experiencing the same things I am as a spouse, parent and caregiver.

Amy

An Evolution of Love

3/1/2008

Thank you both for putting your experience into words for others to gain insight and understanding. My husband is in the last stages of Pick's Disease (Frontotemporal Dementia). He has both the behavior and language variant. Jim was a pastor for nearly 40 years before we had to take early retirement. I know the pain of saying goodbye while he is still here physically......each day, I visit Jim in the special care unit where he has been for the last year.....and each day I lose a little more of the beauty of who he was, but like you our family's love for Jim never changes. He still enjoys family visits from his kids, grandkids, brothers and sisters, neices and nephews.

I enjoyed your book and out of your suffering, others will be helped.

Judy

Request to quote a passage of your book

1/16/2008

Hello Michelle,

I recently read your wonderful book about Bob which has many vivid passages which gives the reader a sense of the journey of your family with Bob’s illness.

I work as a counselor for Alzheimer’s Australia Vic in the early intervention program and for the past few years we run an education, information and support 6 week program specifically for people with Younger Onset dementia. There are usually a mixture of people with Alzheimers and Fronto temporal dementia and this type of illness is reported to be the most challenging for families. I was therefore very interested and at the same time saddened to read about your experiences particularly with appropriate care facilities.

For our February newsletter, I am planning to review your book which will be in our library soon, and I am seeking permission to use a few quotations for the review – if you can let me know if you are agreeable to that as soon as you can as I need to send the article in by early next week.

Hope to hear from you soon

Regards

Felicity

I loved the book, I was reading my life with my husband

1/5/2008

I got the book yesterday, read it in one night. It was excellent and it described my husband Paul age 53 almost to a t.We are in the beginning states of diagnosis, but Paul has not been the man I know for at least 4 years.

Thanks for writing it,It was a Blessing to me.hugs..Debra

A note of Thanks to Marie and Michelle

10/21/2007

Dear Marie and Michelle:

I just obtained a copy of the book on Friday night at the Doylestown Hospital Bereavement Group for Young Surviving Partners and I thank you both for writing the book and sharing Bob and what you lived through. I applaud your courage, devotion and all the words I can not find that would begin to do justice to what you dealt with in the loss of Bob and the ordeal of coping with his decline and death. He was a remarkable man and the kind of person that made the world a better place. If there were more people like Bob, the world would be more like heaven here on earth. From your account, it looks like you two had a bit of heaven on earth because of the way Bob treated you and the unwaivering bond that was there until the end.

I also liked the passage chosen on Bob's prayer card that recently appeared on my fathers prayer card (he died of cancer on 9-29-07). The declines that I experienced over time with my wife really hit me hard as I read the book. I hope that the book creates more awareness of frontemporal dementia and your willingness to work for the betterment of others afflicted with this illness is admirable. You are both good people. I am fortunate to have to have read the book and I plan to share it with a coworker who lost a family member to another form of dementia. The world needs more people like you! You are both genuinely kind and you are making a difference in a lot of people's lives and I feel that Bob lives on through you. I wish that I could have met him.

Thanks for sharing and for making a difference. Len G

Just finished your book...

10/9/2007 -

Marie, I just wanted to let you know that I finished your book and I was so touched by it. Even though we shared a number of conversations and I was kept up to date on what was going on at the time, the book really gives me a feeling of what it was like emotionally for the three of you.

It is a wonderful book and while I'm so very sad that you lost such a wonderful husband and loving father to your daughter, Michelle, I'm so very proud of you and the long hard road you've walked. This book is a loving testament to him and the life you shared, I wish it didn't have
to be written, but I think it will help others who are or will be on this same road. Bravo for a job well done...

With Love

Christine