August 2010 - Pete's Letter To Friends and Team Mates Announcing his Diagnosis
Teammates and friends,
I have been struggling with an undiagnosed health issue since May of last year. At the end of April this year I was conclusively diagnosed with ALS. ALS is amyotrophic lateral sclerosis also known as Lou Gehrig’s Disease. Being diagnosed with ALS is not an easy process - both clinically and emotionally, I would like to share with you my story:
There is no medical test for ALS, it ends up being a process of elimination of other things and diseases that could mimic ALS - for my diagnosis it took almost a year. It has been an emotionally draining process for both me and my wife Monica, and the few friends and family that knew of our situation. There was hope with each test, procedure, and new doctor that they would find something else - and sadness and despair that followed as the list of diseases with similar symptoms was slowly reduced.
I had blood tests for everything imaginable, a spinal tap to check my cerebral spinal fluid for irregularities, two MRI’s in the hope that there was a nerve impingement, and three EMG’s where they stick needles into my muscles to test function based on electrical current. Finally I was treated with IVIG which is Intravenous Immune Globulin; I received two 8-hour infusions for two days every 4-weeks for three months. The IVIG had no affect on my condition and one week after my last infusion I was diagnosed with ALS.
By the end of April the ALS diagnosis was not really a surprise. I have been well informed throughout the process and was aware of my symptoms and their progression. I was actually informally diagnosed by a well know neurologist at the end of November, he was 95% sure then that it was ALS.
So you may have some questions:
What are your symptoms and progression? In May of last year I started having muscle twitching or fasciculation’s in my left arm. The fasciculation’s continue today and have spread to most of my upper body and slightly in my legs. By November of last year I started to have weakness in my left thumb, today my left hand is very weak and my upper body is getting weaker, my legs are just starting to feel weak, my balance is a little off, and my speech is moderately slower. ALS does not affect the mind. I stopped mountain biking in February and stopped road riding with any intensity in March. I am not running, swimming is just therapeutic now; my nice fluid strong stroke is a distant memory. I am walking without a problem for now.
How are you doing? I am doing pretty good, 90% of the time I feel normal. I have been blessed with an awesome life and have had a beautiful loving and strong wife Monica by my side for the last 20 years. We have two boys Zach 11 and Ryan 13 who are doing their best to grasp what I am going through and how it will affect the future. Our families and the few friends who have known of this are very supportive. I do not ride, run, or swim like I used to – I miss that, but have replace that time with more time with Monica and our boys. I am making the best of this situation and maintain a healthy amount of hope, and have great faith in my future. I am still generally happy, have a good sense of humor, and positive outlook on life.
How is Monica? Monica is doing well also. She has been very strong for me, and when she has moments of weakness, I am strong for her. She is still riding, running, and swimming – and we will be in Maui for an Xterra race in October.
What is your prognosis? ALS is degeneration of motor neurons and lastly affects the respiratory muscles that allow you to breath. I have had my respiratory function tested several times and most recently I tested at 110% of normal; when respiratory function hits 50% they say you have about a year left. I anticipate my upper body weakness will continue and it will start to affect my legs, but I plan on being around for a while before I hit that 50% mark.
What can you do to help? Keep me and my family in your prayers. We are fine for now. If you want to help in the future, then let us know. The coming years will be difficult for us and your support will be greatly appreciated. Some time in the future the Forward Motion Club will do their annual spin-a-thon to raise money for ALS. This year it was in February and was largely successful raising over $15,000.
It has been difficult for Monica and me to not tell anyone about this for several reasons. Before the end of April I didn’t have a diagnosis, it has taken some time for us to absorb this, and we had several personal and business obligations we needed to take care of. We try to live each day as normal as possible - it is draining to dwell on this. You all know there are no guarantees in life, Mark Pendleton is a great reminder of this; once you recognize this - you should live everyday with full appreciation for the good in your life – that is what Monica and are doing, and that is what we tell our boys.
Regarding our boys: Please be sensitive in sharing this information. The last thing Monica and I would want is for our boys to have to deal with an insensitive comment, whether inadvertently or not, at school or in our community. Our family is focusing on today, tomorrow, and next week; what eventually happens is irrelevant right now. We know we can count on your support.
If you wish to contact us, our email addresses (note that mine has changed).
Pete’s email is: email@example.com
Monica’s email is: firstname.lastname@example.org
I want you all to know that riding and racing with Wells Fargo last year was an awesome experience. I have very fond memories of training rides and racing, when I think about road riding - I think about riding with the Wells Fargo team.
To Pete's cycling teammates - Kovarus, January 13, 2013
Thank you for your support of the Pete Zucker Foundation. The money we raise will go towards finding a cure and raising awareness for ALS. I am honored that my image is on the 2013 kit. I hope that you find inspiration this year as I always did wearing the team kit. Somehow it made me ride harder and stronger and faster - for my teammates!
"For Pete's Sake" - A Frank Sinatra Gala, February 11, 2012
Thank you all for coming here tonight and supporting ALSTDI through our fundraiser “For Pete’s Sake”. And thank you to the Mazzocco family for organizing and hosting this amazing event. I am blessed to be part of the Mazzocco family – I love you all.
Many of you have supported our family much before tonight – after my ALS diagnoses was public knowledge - we were immediately flooded with compassionate phone calls, emails, and letters - offering support.
We are forever grateful to everyone who has helped us and said a prayer for my family and I. It has truly made a difference in our lives.
They say you find out who your true friends are when you are down on your luck – Monica and I can honestly say that through this - all of our friends are true friends. We feel blessed with so many kind, generous, and loving friends.
ALS has taught me compassion. Every other man or woman with ALS is my brother or sister – they truly know my journey. I no longer pass by a person in a wheel chair without thinking there is more to that person than a disability – there is a story, they probably suffered, and they were once whole.
So what is it like having ALS? It is an awful terrible sad thing. It is robbing me of physical abilities in the prime of my life, robbing my wife of 17-years of a husband, and our 2-boys of a father – I could dwell on the brutal ness of ALS - but that is a dark place to try to live from.
Instead I try to focus on the positives. With ALS your body deteriorates every day – so from a physical standpoint there is no better day than today! After my diagnoses – I started to think about what I wanted to do with my life. We took a trip to Italy with our boys, which was beautiful.
And then I started to think what else of importance had I always wanted to do, and it was immediately clear that I wanted to live each day as normal as possible cherishing my time with Monica and our boys – just living with my family.
Faith – I have faith. I have faith that I will be all right through all of this. That somehow there will be positives that come out of this situation. This is hard to keep in mind all of the time – especially for Monica and our boys – but I know it is true, it may some time – but just have faith.
I am grateful for the now 46-1/2 fortunate years I have lived – many have lived far less with less fortune. Sometimes I feel like I am growing old really fast, my body is deteriorating but not my mind – and I really appreciate each day that I am alive.
We have great friends – Kevin Magna and Chris McCrary have started a bike race that benefits “For Pete’s Sake” and ALSTDI. Forward Motion Race Club did a spin-a-thon for 16-1/2 hours today that memorializes the 16-1/2 Jon Blais (who had ALS) to complete the Hawaii Ironman Triathlon. The spin-a-thon benefits For Pete’s Sake” and ALSTDI,and the Blazeman Foundation.
Even if you have never been sick in your life or nobody in your family has ever been sick – I think there is an obligation within all of us - to make a difference. I am proud to say that I am one of a first group of eight to complete a double blind drug trial for Neuraltus and their drug NP001.
Lastly I want to thank my wife Monica who gets more beautiful every day and has always been by my side. I Love You Monica and my love and respect for you continues to grow every day.
Thank you for supporting “For Pete’s Sake” and ALSTDI.