On March 19, 2014, my life changed forever. I was diagnosed with ALS also known as Lou Gehrig’s disease. A neuro-degenerative disease that eventually leads to paralysis. I started having various symptoms about a year ago that led to my diagnosis. It’s only been about 3 months since my diagnosis and so much has changed with my health as well as my life.
What started as a slight slurring in my words has now turned into barely being able to speak at all. Beside my speech, now swallowing has has become an issue; a simple thing like drinking water, feels like I could drown by the water going the wrong pipe. My balance also was affected: at first I notice that my walking was a bit forced has now turned into having have to use a walker in order to walk. Based on the studies, the average life expectancy of someone with ALS is between 3-5 years from the time of diagnosis. How do I wrap my mind around that?
With the urge Roni Sloman, she had encouraged me to write about my experience as I go through the daily changes of this disease. I knew that it would be good for me to share, but I had never written a blog before. However, as I go through the changes, I knew that I had to write. If anything else, I want to raise awareness about ALS. This is a cruel disease with no cure. Its only been three months since I was diagnosed, and already there have been considerable physical changes that I’m going through. So the purpose of this blog is to share my life through the lens of someone who has ALS. Secondly, I just need to be able to express myself. In the last few months, it’s getting harder and harder for me to talk. Communicating has been a challenge. Saying simple sentences takes so much effort. I want to share about my highs as well as my lows, as Roni said to me, “just be honest and real”. I hope you will join me in my journey. I covet your feedback, your encouragement, and your support!
I look forward to sharing my journey with you.
Entry #1 – Chicago
July 11, 2014
Been in Chicago now for over a month now, visiting family and old friends. After my diagnosis, my sister wanted to spend the summer here so i could be with family. Its been over 6 years now since I’ve lived here. I grew up here, Chicago is what I consider my home town. I have 2 boys from my previous marriage,and brother and sisters still live here. The plan was to only stay here for about 1 month, knowing that I needed to be back for my second ALS Clinic appointment. However I was told that there was also 2 clinics that are both multi-disciplinary, meaning they would have all the medical professionals that i need to see, ranging from the Neurologist to Occupational therapist. With the help of the ALS Clinic in Tampa, I was able to secure an ALS Clinic appointment here at University of Illinois Chicago Campus. Seems like I’m going to enjoy Chicago for the summer!!
I’ve only been here a over 1 month and already i can see a considerable difference in my physical strength, and the intelligibility of my speech. Living in the middle of Chicago, the pace here is considerably much faster than San Diego and Tampa. The great thing about living in a city like Chicago, you really don’t need a car, there are so many different way to get around. You have trains, buses, taxis, and you can even rent bicycles and ride them throughout the city. And the summer in Chicago is crazy!! The whole city comes alive in the summer! So many neighborhood fest, concerts, museums, and cultural things to partake in!
The first month here was wild! There were graduation parties, family reunions, reuniting with friends that i have not seen since high school! It was non-stop! It actually took me getting a little sick that caused me to slow down. I’ve come to realize that,all these activities that I love to do is now an everyday challenge. You see, I was the type of person that wanted to do everything! I did not want to miss a beat! And now, compared to everyone, I feel like my pace is that of a turtle.
Reality is now setting in that I have to accept that my body is changing, and that my strength is weakening…(I walked two blocks today to go to Barnes and Noble..it felt like walked miles). and simple communication is becoming harder and harder….(I have to write something on my phone and show what I’m trying to say). Often times, I’m at parties and I listen to people talk and I find myself not wanting to engage because they can barely understand the words that come out of my mouth. Yes this is my new reality.
Having said all that..I do find that people have been so accommodating, kind and willing to help! I see the goodness in people and that I am joyful about. Thanks for letting me rant.
August 23, 2014 – Visit with the Doctor
Lots has happened since my last post. I had a 2nd ALS Clinic and got to go to it here in Chicago. My friends had an ALS Fundraiser party for on August 9th…and now this viral ALS Ice bucket challenge!So many amazing things are happening, one after the other!
Let me start with the ALS Clinic appointment; I ended up spending most of my day at University of Illinois Medical Center where I had an opportunity to see a pulmonologist, an orthopedic team, dietitian, and a neurologist. It was one stop for all my medical needs and appointments. Well I knew that the ALS has progressed, and the clinic validated my feelings. I have lost over 15 pounds, in turn my dietician has told me to fatten up. My legs are definitely getting weaker, an orthopedic suggested that I get a special brace, due to my “drop foot”. My lung capacity is down below 50% and I’m starting to have a hard time swallowing. The neurologist suggested that we need to start thinking about a feeding tube. It was a hard thing to embrace but I know that it would eventually have to happen.
I left a clinic a little despondent, but these are the realities of living with ALS that I have to face. As I talked with my sister and my family, we decided that we should do it but wait until I get back to Florida. Let’s enjoy the rest of the summer! I did not want to think about it anyway. So on with the party…..
My friend Jennifer Noble and Linda Baer from High School wanted to put together an ALS Fundraiser on my behalf. It’s a great way for me see people that i have not seen in years come together in one place, and It’s a great excuse to have a party. I wasn’t quite sure how many people show up because of I have not been around in years. But lately, I’m learning to just go with the flow, set some positive intentions out there and let it go…let it flow!
To my surprise, everything came out perfect. It was a gorgeous day, Jennifer who is heavy into the blues scene here in Chicago, got a couple of Blues Bands. My friend from high school Debbie Discipio donated all the food, and another friend from high school was able to provide the venue in Hinsdale IL…right next to the high school that we grew up in.
Family and friends from High School, grade school, people that I hung out with and people I use to work with at the Board of Trade, came. I had an absolute amazing time. We ended up raising over $3,000.00. And as I thought about how awesome that day was, and I pondered how my journey with ALS has given me a new perspective on life. I’ve learned to appreciate every moment in life. And as I was thinking about the party, a biblical verse came to my head…about storing treasures in heaven:
“Do not store up for yourselves treasures on earth, where moth and rust destroy, and where thieves break in and steal. “But store up for yourselves treasures in heaven, where neither moth nor rust destroys, and where thieves do not break in or steal; for where your treasure is, there your heart will be also.”
And as I thought about that verse, and its meaning….I thought of the amazing friends that I had encountered throughout the years. God, knows that I have no material wealth to talk about. But He has enriched me with wonderful, amazing friends. My family and friends are my treasure, their relationship are priceless and worth much more than gold. I am a rich man!!The party has given me a emotional and spiritual boost.
So many thing that i would still love to talk about, like the ALS Ice Bucket Challenge, what a miracle that has been. But I do have to pack and get ready to head to Las Vegas and a wedding in Joshua Tree National Park. Looking forward to my next post!
Friday August 29, 2014 – Vegas Baby
Well it’s Friday here in Vegas, it’s Labor Day Weekend, it’s my second day here….and it’s hot! We are going to try and go see LOVE by Cirque du Soleil, show based on Beatles music! I can’t wait to check it out. Last night I went driving around the strip with Olivia, you can feel the energy and atmosphere here. I was here a few years ago with my friends Josh and Alia for a CEO Space Conference. We partied Vegas style!vWe stayed at Josh’s friend who was a bartender and he knew all the hot parties in town,it was a night of craziness! As we drove around last night, I couldn’t help wishing that I could still do that. n a way it saddened me, but I have to practice being in the moment, that even though I can’t do that anymore, I’m with a loving sister that wants to be with me and wants me to enjoy regardless of the circumstances. So that is what I will do…I will embrace every moment and discover a new potential to learn.
One of the things I’ve learned from yoga is being in the present. It’s really about being aware of your breath and being in tune of what is going on with your body. To create new space and expansion, both mentally and physically. I want to touch on what is happening with me physically. I notice that my legs are stiffer and weaker. I can barely move my feet and toes anymore. The strength on my shoulder and neck muscle has weakened. Yoga has been an incredible practice to relax and honor the body. I cannot do any vinyasa flow anymore, but continue practice modified asanas or poses. I’ve been using my walker as well as the wall to do triangle poses. One of the yoga techniques that I’ve learned is to “As I breathe in…. become aware of the muscles around your… (name a muscle you want to focus on)…. As you breathe out, allow those muscles to release………soften….. and relax. It is an easy exercise but it has helped me tremendously in calming my monkey mind and relaxing my being. What a blessing yoga has been for me.
Well, I have to get this weekend going, have an incredible Labor Day Weekend. Namaste!
September 22, 2014 – The Progression
Hello Friends, here is an update!
I’ve been home since the beginning of October and I had an ALS clinic appointment. After looking at me and seeing that i had lost so much weight…about 30 lbs since my last appointment with them in April, they wanted me admitted right away to get a feeding tube procedure. So the following day I went to the emergency room at Tampa General to get the procedure done. The procedure was very painful, they did not get me too much anesthesia due to my lung capacity being around 50%. It hurt like hell.
Since i have been good for four months traveling, i had to catch up with all the medical care that i was us suppose to be getting including Physical, Occupational, Respiratory Therapy. For a whole month it was one appointment after the other.
So many changes has happened in my body, eating normal is out the window seeing as I almost choked to death twice. My speech is not totally unintelligible, so i have to use an application on my tablet called “text to speech” in order to communicate to people. Its been a frustrating experience because by the time i write my thoughts, everyone’s conversation is way ahead of the previous topic. I guess the good thing is a lot of my doctors and medical practitioners that i havespoken to, said they have some ALS patients who aren’t using any technology at all.
The other challenge that i have has been the weakness of my whole body, my legs feel like they weigh 200 lbs. I can barely lift my legs inches from the ground. My arms feel like I’m lifting 30 lbs dumbbells. It takes me forever to do anything simple. Just to brush my teeth I have to use two hands to move the toothbrush around. I wake up in the middle of the night and simple things like rolling my body over to change position takes incredible energy and I end up not getting too much sleep.
In spite of all these challenges, the thing that constantly amazes me is the love and support that i get from my friends. Last week they gave me birthday and welcome home party in which about 80 people showed up! A friend of my mine said to me last summer while i was in Chicago that “perhaps the gift to all the challenges your going through is that God wanted to show you how much you had effected people, and that you are loved my many. Very few people get that opportunity to experience that. We all search for significance in our lives…and look at how many people say to you how much you mean to them!”. I wept!
I am inspired by the overwhelming love that people have bestowed upon me. And at the same I grieve for the things and use to do…play, communicate, participate in the dance of life. I miss my yoga, I miss my volley ball, a good dinner, and the ability to simply live like I used to.
My fatigue has made it harder to communicate as often as I’d like but I will continue to reach out as I can and I’m so grateful for any of your prayers and for your friendship!
Our Last Post
I am so sad to tell you that Gerry has passed away. We’ll never understand why someone so incredible would be taken from us too soon. His loved one posted this on facebook. With his final message to everyone.
“With conflicting emotions I regret to inform my friends of the passing of our dear friend, brother, father, uncle and son. He was a symbol of joy and happiness for so many people that met him and knew him that it’s hard to not cry for someone you want to rejoice on his behalf. If you knew him as well as I did I’m sorry for your loss; if you didnt know him as well as i… I’m truly sorry for your loss even more. Tony and I were able to see him on Thursday and joke around with him like we always do. Before we left I asked him if he wanted anything… he said tell everyone I love them.”
We love you too Gerry. We love you too.