Gus: Rhino Style

GusGus is magical.

With a few words and his beaming smile, an entire room can light up and fill with laughter. His enthusiasm for life and love is infectious. He calls it “Rhino Style.” I didn’t know that rhinos were magical creatures.

I met Gus Prieto a few weeks ago at the PatientsLikeMe Team of Advisors kick-off meeting. Each individual on this team comes with experiences, conditions, and strengths that are different. It’s my hope that over the next few months, you’ll learn about them individually here.

People with diabetes want a cure. They want understanding.  They want support.

People with ALS want a cure. They want understanding. They want support.

People like Gus.

I’m sharing his story today.

What is ALS?

als_what_is_als_infographic-thumb-425pxYou might know it as Lou Gehrig’s disease. The Ice Bucket Challenge that was all the rage last year (and raised an important amount of money for research!) was for ALS. But much like diabetes, the general public may not understand what the disease really is, so here’s a great explanation…

From The ALS Association:

Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons  die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.

Based on U.S. population studies, a little over 5,600 people in the U.S. are diagnosed with ALS each year. (That’s 15 new cases a day.) It is estimated that as many as 30,000 Americans have the disease at any given time.

Current statistics show “half of all people affected with ALS live at least three or more years after diagnosis. Twenty percent live five years or more; up to ten percent will live more than ten years.”

Being on the PatientsLikeMe Team of Advisors brings people like Gus into my life. I wanted to share his story – and in doing so, help bridge the patient community across conditions. We can all learn from each other, and today, I’m sharing what I learned from Gus, in his own words.

Life Before Diagnosis: Rhino Style

Gus at workI was very active – full of energy.  I enjoyed life, and everything my wife and I built together. Loved my job, teaching, coaching, and mentoring the young staff moving forward.
I spent 28 years of my life at the same car dealership, building myself to one day owning my own store.  I just enjoyed being around people who shared my vision and aspirations for success.
I would always say: “Positive in and positive out.”  I called it “Rhino Style” –  hard work equals great success.
I loved the outdoors and loved playing baseball; even won a championship AAA division with my son.  That trophy is priceless, sharing good times between father and son.  Vacation trips and dancing… boy, could I dance.

I was born in Cleveland Ohio, 1963. That was a good day! I moved to California with my parents in 1979. I was sixteen and didn’t want to leave Ohio, but I really didn’t have a choice back then. Shortly after we moved, my Mom and Dad split up and divorced.  By the time my Dad was diagnosed with ALS, we had drifted apart, so I didn’t spend time or see him very much. I hated to hear how his life had changed and that he couldn’t walk.

My Dad passed away over 30 years ago. His medical team told us that ALS wasn’t hereditary and not to worry. That was it, nothing more was ever said.  We didn’t talk about it. I have two sisters and one brother.  They are all doing very well and our family has grown: 11 boys total between the four of us! My life is good.
Gus and MarieAnd of course, there’s my wife Marie. Where would I be without her?  She laid the foundation so well I still to this day don’t find or can’t see any cracks.  Wonderful woman, wife and friend.

What prompted you to go to the doctor?

Something was wrong in July of 2012 while at the Long Beach Aquarium with my grandson.  I was very tired that day after walking around, which wasn’t like me. I told my wife my legs felt very heavy and my walking was odd, with kind of a limp, as if I hurt myself.  I told my wife to schedule an appointment for a check up.
Aside: According to the ALS Association, gradual onset, painless, progressive muscle weakness is the most common initial symptom in ALS. Other early symptoms vary but can include tripping, dropping things, abnormal fatigue of the arms and/or legs, slurred speech, muscle cramps and twitches, and/or uncontrollable periods of laughing or crying.

Tell us about your diagnosis…

I remember that day like it was yesterday.  I was sitting in my finance manager’s office, going through contracts, and the call was transferred.  I picked up the phone:
Hello, Gus speaking.
It was the neurology department at Kaiser.
Gus, do you have a moment?  Yes, well… we received your test results from your blood work, and it tested positive for SOD1 unknown variant related to ALS familiar diseases.
I can’t remember what I thought at that moment, but I do remembering tears coming down my face.  I left the contracts on the desk and called my owner of the dealership.  I told him, and he said go home and reset, we’ll see you in the morning.
That day was the hardest day of my life. I was told May 15, 2013.  I worked till November 30, 2013.  I could not stop thinking and after my diagnosis, couldn’t continue to run a dealership, much less own one as I had planned.

What did you do in those first days? 

I walked around like a zombie. I was there, but not there.  It was not good,
I went through all the negative thoughts you could possibly think of.  It was absolutely crazy.  I don’t even think I could recall those thoughts, it was that bad.
You could say I most definitely disappointed, and those first days were a lot of: “Why me???”, “It’s not fair!!!”, and “You work hard for all your life and then it’s taken away.”
That was then and not now.

How did your family deal with the diagnosis?

Gus FamilyUnderstandably not well,  but they were very supportive, were and still are there if I need them.  I guess because my dad passed away of the same disease, it was a bit harder for my immediate family.

What scares you most about ALS?

At the beginning, many things.  Doctors asking if you are ready for retirement, and telling you your life expectancy is 2-5 years.  How do I break this information to my kids, my family? Our finances and bills, how can we do all this?  And the not knowing how fast or slow this disease will consume me.

What has surprised you the most after your diagnosis? 

Prieto PowerHow many people you truly affect.  The love and support was overwhelming.  For me, how my wife has just taken the bull my the horns and is running with it.  And the way my two sons have dealt with this in their own special way.My attitude and just being me has not changed one bit.
I get frustrated, upset, and angry but understanding and accepting this disease has helped me 100 percent.  If I were to die today, I have no regrets and had a wonderful life.

Who is on your medical team? 

I’m very fortunate to have two teams: ALS clinic through Kaiser, and the ALS clinic through UCLA.  They both bring different ways of assessing your needs and concerns.  I see them both every three months.
The only thing which concerns them right now is my breathing. There are three tests (inhaling, exhaling, and sucking) and my readings are low, so I use a bi-pap breathing assist device every night.  The idea behind this is to conserve my energy while sleeping.  I believe it’s helped me, as I have a little more energy throughout the day.

What is your current treatment plan? 

My treatment plan, is solely based on natural healing through eastern medicine and a gluten free diet. No alcohol or red meat too, because of the energy it would take my stomach to digest.  My medical teams are amazed on how well I’m doing, based on the usual progression of this illness.  They agree with me that if it’s working, don’t stop.

How did you decide? 

Researching and reading, mostly done by my partner and caregiver, my wife, Marie.  I give her all the credit for her strength and will in overcoming ALS.

Have you participated in clinical trials?

No, not yet, and this is why.  I feel my condition hasn’t progressed and with many drug side effects I’m just not ready.  I feel a steady natural treatment is working for me just fine.  If my illness decides to go in a different direction, then maybe.

What would you tell someone who is just diagnosed? 

Well, things are going to become a little more challenging.
Don’t believe everything you are about to be told, don’t read too much into what others have gone through, because everyone is different.
  1. Stay positive and focused.
  2. Do your homework, research, join PatientsLikeMe and ask what is working for those diagnosed early on.
  3. Create an open line of communication with your caregiver. Let them know that mood swings will happen more frequently. Anger, frustration, and feeling alone is often felt by both.  Build the bridge to understand each other’s new feelings because they’re not the same.
Gus, Gus Jr., and grandson Mason
Gus, Gus Jr., and grandson Mason

Patients Like Me

PLMTwitterThe diabetes world is familiar to me. I know where to get the latest information on research, which blogs cover certain topics, where to connect with others, and who to talk with to get a different perspective on daily management. It’s comfortable. It’s safe.

I’m a local.

I have been offered and gladly accepted a ticket to travel for the next year into another world… or worlds, as a member of the 2015-2016 Team of Patient Advisors for PatientsLikeMe. My exploration into other patient communities and what it means to be a partner will send me into unfamiliar territory. I have no map. I have no frame of reference.

I’m a foreigner.

But I have travel companions – my new partners. And that’s what this year’s Team of Advisors is all about. These partners are 13 incredible individuals who willingly share their data, their experiences, their strengths, and most importantly, stories of their journeys. We’ll be examining the definition of partnerships in healthcare, then creating resources and ways for partnerships to blossom between industry, researchers, health professionals, and patient communities.

What Is PatientsLikeMe?

PatientsLikeMe brought the team together to their Cambridge headquarters for an intense initial meeting. The founders, Jamie and Ben Haywood, began Patientslikeme to find a cure for ALS (their brother, Steven was diagnosed at 29.) When they talk about their brother and why PatientsLikeMe is important to them, the passion is palpable. Despite the fact that Steven passed away, Jamie still talked about him in the present tense in our meeting. (I’m not sure he even realized he did that.)

Here’s Ben, sharing the story of PatientsLikeMe at TEDxCambridge:

Not content with gathering research data for just ALS, the site now allows for tracking of thousands of conditions. Members can input their data and instantly update how they feel. Daily tracking for most conditions can help show trends that can be helpful in medication dosing. The forums for many conditions allow members to talk about what works for them and what doesn’t. For many chronic illnesses, the data shared can help researchers and companies provide better drugs, examine how clinical trials are run, and if  organizations are asking the right questions.

FDA and PatientsLikeMe

They’re collaborating. Yep. This makes me do a happy dance. Patient reported data is necessary. Aggregated patient reported data is sometimes hard to access. PLM (PatientsLikeMe is helping.) Here’s the gist:

PatientsLikeMe and the U.S. Food and Drug Administration (FDA) have signed a research collaboration agreement to determine how patient-reported data can give new insights into drug safety. Under the collaboration, PatientsLikeMe and the FDA will systematically explore the potential of patient-generated data to inform regulatory review activities related to risk assessment and risk management.

Where Do They Get The Money to Run PatientsLikeMe?

This is the reason why I love what they’re doing… they are firm believers in transparency. Straight from their website FAQ page (and easily found…):

We take the information patients like you share about your experience with the disease and sell it to our partners (i.e., companies that are developing or selling products to patients). These products may include drugs, devices, equipment, insurance, and medical services.  Except for the restricted personal information you entered when registering for the site, you should expect that every piece of information you submit (even if it is not currently displayed) may be shared with our partners and any member of PatientsLikeMe, including other patients.  We do not rent, sell or share personally identifiable information for marketing purposes or without explicit consent. Because we believe in transparency, we tell our members exactly what we do and do not do with their data.

By selling this data and engaging our partners in conversations about patient needs, we’re helping them better understand the real world medical value of their products so they can improve them. We are also helping companies accelerate the development of new solutions for patients.

PatientsLikeMe is a for-profit company (with a not-just-for-profit attitude).  Every partnership we develop must bring us closer to aligning patient and industry interests. Our end goal is improved patient care and quality of life.

All too often, we question motives in healthcare. (How many times have you heard: “There will never be a cure for diabetes because there’s too much money being earned by companies treating it…”?) By openly sharing their intent and not hiding, I want to help. So I am.

Who is on the Patient Team of Advisors?

Back row (left to right): Doug, David, Jeff, Craig, Allison, Laura, Angela, Cyrena Front row (left to right): Patti, Peggy, Phyllis, John, Gus, and me.
Back row (left to right): Doug, David, Jeff, Craig, Allison, Laura, Angela, Cyrena Front row (left to right): Patti, Peggy, Phyllis, John, Gus, and me.

Men and women from across the country with different life experiences, strengths, and conditions. ALS, MS, Type 1 diabetes (me!), Fibromyalgia, metastatic cancers, Parkinson’s, Bipolar II, Lupus, PTSD and depression conditions are being represented this year. We spent our time getting to know each other and learning about what makes us patients.

By the end of the meeting, our discussion was not about our individual diseases, but how we can work together to create better partnerships in the world. This big world of healthcare that encompasses much more than just patients. I’m ready to be more than a patient. I want to be a partner.

Postcards from Me

Expect to hear from me about my journey this year with PatientsLikeMe and the things I learn from my fellow team partners. Some of it will be fun – some of it won’t. But it’s important to step outside of your own comfortable space and explore. I’d love to hear from you about what you’d like to learn – so we can travel together.

People with diabetes know how to pack for a trip… so I’m ready. Off I go…

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Disclosure statement: My lodging and travel expenses were paid by PLM to get me to the kick-off meeting. This is a volunteer position and I am not paid to endorse or share information about PatientsLikeMe. My thoughts and words are, as always on this blog, my own.