Today I bring you the first in a series of posts from Katie Timp.  She’s an occupational therapist in Virginia, and also the daughter of a man battling ALS.

ALS (Amyotrophic Lateral Sclerosis) is commonly known as “Lou Gehrig’s Disease” for the famed baseball player who died from the disease in 1941.  If you have known a family affected by ALS, you know what devastation it causes.

Katie’s father, Phil, has likened his battle against the disease to climbing Mount Everest.  As you will see from today’s post and the others that will follow, he has used his illness to inspire others and raise money for ALS research and support.

I’m not going to lie.  Parts of Katie’s story are excruciating to read.  Her family is in the middle of a battle no one would wish on their worst enemy.  And yet, through all of this ugliness, a beautiful story of familial love emerges.  It’s a story I am proud to share.

All Roads Lead Back Home – A Guest Post by Katie Timp

Katie & Phil after completing a half-marathon before his diagnosis. Katie says he keeps his medal by his bed every night.

Katie & Phil after completing a half-marathon before his diagnosis. Katie says he keeps his medal on his bedpost as motivation.

As a child, I knew first hand what it was like to take care of another person. My older sister, Beth has a rare disorder called Rett Syndrome. She is unable to talk or walk without assistance and requires help with everything she attempts. She has grand mal seizures that are frightening to witness and as a young girl, I had witnessed far too many! She is the reason I chose to go into a field where I could help others. I decided that I would become an Occupational Therapist to help children with disabilities, just as my sister had been helped throughout her life.

I had taken a year off after graduating college to complete all the prerequisites I would need to apply to Occupational therapy school. When first looking into schools, my initial reaction was to obviously remain close to my hometown of Bristol, Virginia.

Growing up, I was surrounded by family. My mom has 5 brothers and between them, I have 6 uncles, 5 aunts, and 13 cousins – so family gatherings were always a wild time. One day it hit me that I wanted to fulfill a dream of living in New York City. I had visited several times with my parents and it wasn’t until I started looking into applying to Columbia University and NYU that I made my decision for sure – I was going to the Big Apple!

I received an email from Columbia of acceptance and I couldn’t believe it! Although, I began to think, “How will I ever pay to live in NYC and attend a very expensive graduate school?” Well, my answer came when I received a letter from the NYC Department of Education offering a full-tuition paid scholarship for payback of 4 years of working in the NYC schools following graduation.

My Dad and I planned the trip up for the interview. As a child, I was extremely lucky to have both of my parents very involved in my life, my Dad especially. He did not just attend my softball games but he sang the National Anthem and did the announcing from the press box for the game. He did not go and see me perform in musicals throughout high school but he was there helping to direct the musical. So it was an obvious choice that he would head up the 10 hour car ride with me.

As we drove the long stretch up Interstate 81, he was quizzing me on different questions that might be asked. As we bobbed and weaved through traffic in Times Square and finally found our hotel room, I began to become very nervous. I had to receive this scholarship to have a chance of being able to afford school. There were 250 applicants between 2 days of interviews. They would accept 8.

Fast forward a couple weeks and my parents have moved me into my apartment, we’re eating lunch at Cheeseburger and Paradise and we get a call from my sister’s caretaker saying I received a letter in the mail. She opens it and says I GOT IT!!!! I would be living in NYC for 7 years and I could not be more thrilled – what a dream!

Katie's graduation from Columbia University.

Katie’s graduation from Columbia University.

I graduated from Columbia University in 2010 and began working in a school in Brooklyn, NY. I had signed up for summer school to make a bit more money the summer of 2011 and as I’m sitting at my table, writing notes, I receive a call from my Mom. My Dad had had some issues with his foot slapping awkwardly on the ground when he ran. This was very odd, especially due to the fact that he is a 40,000 mile runner. We ran the NYC Half-Marathon together and now he was having some oddities with his gait. He got right into the neurologist to see what might be the problem.

My Mom called me panicked before the appointment asking what I thought it might be.  I had learned about different diagnoses and she wanted to know if I thought it could be ALS, Amyotrophic Lateral Sclerosis. I immediately said,

“There’s no way Mom. That is the worst case scenario! Dad can’t have the worst case scenario!”

Sitting at the table and listening to the words my Mom said – “Your Dad has a probable diagnosis of ALS, Lou Gherig’s disease” – was one of the hardest moments in my life. My world stopped.

My first reaction was to look up on the internet what ALS was exactly. I saw phrases such as : “2-5 year life expectancy,” “nerve detachment from muscles,” “muscle weakness and atrophy,” “constant fasiculations (small muscle twitching).”  And then,

“Ventilator. Functional loss of all muscles. Breathing difficulties. Losing the ability to speak. No known cause and no cure. Terminal illness.”

This would be the disease that would eventually not only take my Dad’s life, but take it an ugly, frustrating, and helpless way. I went into the hallway and cried alone for what felt like the remainder of the afternoon. On my way home, riding the subway, I felt thankful and utterly lonely at the same time as I wept on the train car and not a person looked in my direction. That moment is when I decided I would be going home again to be with my family.

* * * * * * *

Next week, Katie shares her thoughts about her move back home and her father’s battle against his disease.

5 Responses to “The Caregiver Series : “All Roads Lead Back Home””

  1. on 04 Feb 2013 at 10:07 amhot Nai Nai

    Katie …thank you so much for sharing your story. I look forward to next week. Your sharing is a blessing to all of us. ALS has to be one of the most devastating diseases there is. I know I will gain strength from reading your story. Again thank you

  2. on 04 Feb 2013 at 10:58 amDiana

    Katie, I feel very blessed to know you personally! I am looking very forward to reading your posts. Your family is extraordinary!!!! I have also been blessed to hear your parents speak publicly about their faith and what it has been like to have a child with Rhett’s Syndrome. You and your family are amazing!! I want you to know the work you do at our school is exceptional. The children at Wise Primary are blessed to have you as their OT!!!!!!
    Thank you for all you do for everyone!
    love and prayers, Diana

  3. on 04 Feb 2013 at 4:35 pmBob Priest

    Katie,

    As I read this about your dad Phillip. A high school friend of mine as well your mom whom I was in the Kelly band with. I know all your uncles and grandparents. I know you have grown up in a strong family unit with people that have ‘much” love to share. It saddens me so much to see what Phillip is dealing with as well as Cindy and the family. I know you have been brought up in a strong belief and faith that will serve you during this time. I to am dealing with a similar disease with my wife…..she has Picks disease and too is starting to move into phases of this disease that changes our life. I have been gaining strength from the reading of your dad and know this blog that helps me to deal with all this. I don’t have the family unit you do with the exception of 1 daugther who is studying nurseing at Liberty University. I look forward to the next writting of your blog and I will be praying for you, Beth Cindy and especially Phil. God Bless you and may you gain continued strength through each day. In His Strength!

  4. on 04 Feb 2013 at 8:44 pmKatie

    Thanks for sharing your story, I can’t imagine getting that news. I’m looking forward to next week.

  5. […] week, we met Katie Timp who shared her father’s ALS diagnosis.  This week, Katie offers more of her family’s journey with this […]

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