Dad:
Dad, 75, was born in Buffalo, NY and was dealt a crappy hand in life. However, he didn’t let the obstacles keep him down or deter him from making something of himself. He served in the US Navy working on a destroyer and a submarine. After his six years of service, he then joined the Navy Reserves for two years. He went to college on the GI Bill and got his degree in engineering and went on to become a successful engineer. He served over 33 years for a major camera company designing cameras. He has been married to Mom for 34 years and has two beautiful daughters. Dad has always been a smart, easy-going guy. He likes to have fun, joke around, and makes friends with anyone and everyone. He’s a gentle soul who’s loved by everyone. Dad enjoys learning, watching and reading anything having to do with history and war. He likes taking Puppy for walks, going to the movies, working in his garden, and watching the Boston Red Sox, Celtics and the New England Patriots.
Mom:
Mom, 62, was born in Boston, MA to a large family. She and Dad met on a blind date and they married in 1974. They were blessed with two healthy children. Mom is an amazing mom and stayed home to raise her children. Once they were grown, she re-joined the workforce working in HR. In 2004, Mom and Dad moved to Southern California to enjoy retirement. Today she is Dad’s main caregiver, loving wife and mother. Mom is a compassionate and generous woman with a beautiful spirit. She’s always there for her family and is a strong, loving role model for her children. In Mom’s spare time, she loves to read and is a CASA volunteer (Court Appointed Special Advocate) where she works with abused and neglected children in the court systems.
Me:
I am 31, and the author of this blog. After having a wonderful childhood, I attended university in California. Upon graduation, I stayed in LA working as a TV Producer for a major cable network. During my time in LA, I met my husband and we married in 2006. For over three years, we have been living in Sydney, Australia but have recently moved home to help care for Dad. I like to think of myself as a strong, independent, fun, and responsible woman. I can be shy at times but I’m extremely loyal and can always be counted on. I love traveling, cooking, wine tasting, kayaking, swimming and spending time with family and friends.
Sister:
Sister, 30, has also had a great life thanks to Mom and Dad. After growing up in our tight-knit family, she decided to attend university in NYC. Upon graduation, Sister went on to get her Master’s degree in counseling while working, counseling university students. After graduating with her Master’s, Sister went on to work with disadvantaged children in NYC’s public school system. Sister is fun, outgoing and is always the life of the party. She’s smart, beautiful, and loves helping others. She enjoys hanging out with friends and family, traveling, volunteering, running and having a good time.
Husband:
Husband, 230, grew up in Northern California in a loving family. He decided to attend university in Southern California where he met me. Husband is brilliantly talented in many things but has decided on a career path in the computer/IT field. He excels at his job and so his work was internationally noticed and offered a position in Sydney, Australia. Husband is kind, gentle and so very generous. He provides sound advice and is a great support system for everyone. When Husband isn’t working, he enjoys cooking, wine, traveling, hiking, outdoor activities, going to the movies, and watching Boston sports teams.
Puppy:
Puppy is the family dog. She is a black lab who was a rescue. Puppy has been with our family for three years and she is a constant friend and guardian. She loves walks with Dad, having her belly scratched and groveling for treats. Puppy plays an integral part in our family.
L to R: Dad, Me, Sister, Mom, Husband
Holly – I was given the link to your blog by Robin Riddle, the coordinator of the Atypical Parkinson’s Support Group in the San Francisco Bay Area. We have a significant number of LBD caregivers that participate in our our meetings and information sharing.
I’m a second generation LBD caregiver, Dad died in 1996 and my 58 yr old sister has been diagnosed within the past year. We’re fortunate that we had the experience with Dad so we could get a jump on my sister’s treatment.
This disease will take its toll on all of you, but obviously the love, the humor and your continued search for the best treatments available for him will make the journey somewhat easier. I commend you for the quality and quantity of information you’ve put together.
Helen
Santa Rosa, CA
Thanks, Helen. I’m sorry to hear about the loss of your Dad and your sister’s diagnosis. Thank you for the kind words and for reading my blog. It’s nice to know people find it helpful in dealing with this terrible disease. I wish you continued strength in your sister’s journey.
-Holly
Hi Holly,
I enjoy reading your blog- it gives me strength knowing that there are other young people helping their parent with LBD- I have left you a message on the LBDA forum.
Sorry, just to clarify, it is a private message.
Hi Lauren,
Thanks for posting. I saw your message and sent you an email. Look forward to talking soon. I hope you continue to enjoy reading the blog.
All the best,
Holly
Hi Holly,
I’m from the u.k and stumbled across your site when I googled lewy body. My Dad sadly passed away only 2 weeks ago at the age of 68. I’m 28 and live with my mum, we both helped to care for my dad when he was diagnosed only a year ago. I’ve decided to reserch the illness now as I still can’t get my head around why he passed away so quickly and we didn’t get much help or information at the time we were caring for Dad. Lewy body doesn’t seem to be very well known in the U.k and I haven’t met anybody who has actually heard of the illness, also doctors here don’t seem to know fully how to treat it. Reading your blogs brings back so many memories of what my Dad was like. You are doing really well, stay strong somehow you find the inner strength to cope with whats happening to your loved one, I did and still am. Its just so comforting to know that other people can relate to what your going through and offer advice and support. I’m now looking into doing voluntry work to help familes who have a love one living with lewy body, to give them the support and advice (from my experience) that I felt I sadly didn’t get when me and my family were going through it. x x
Hi Erica,
I’m glad you found my blog although I’m very sorry to hear about the passing of your Dad. I think it’s wonderful you’re taking your experience and plan on volunteering to help other going through LBD. So many families desperately need help, support and comfort in dealing with this nasty disease. I can relate to being a 20 something when Dad was diagnosed and having to help care for Dad. At times, it’s tough, frustrating and stressful yet other times is rewarding and comforting to know you’re there for your Dad.
I would suggest checking out the Lewy Body Society in the UK. In the US, there’s the Lewy Body Dementia Association, LBD Yahoo Caregivers group and if you’re on facebook, there are several LBD groups and pages. I have a bunch of links on my homepage that might be of some help for you with your research. Wishing you much strength going forward in dealing with your loss. Hang in there.
-Holly