Say hi to Gus, another member of your 2015-2016 PatientsLikeMe Team of Advisors. Gus is someone who’s been very competitive and focused, has always felt that there was nothing he couldn’t accomplish or overcome, and spreads positivity wherever he goes. So when he was diagnosed with familial ALS, positive SOD1 gene – unknown variant, in May 2013, it’s been difficult both mentally and physically.
But even though it takes every bit of his energy, he refuses to waver. Over his 30-year career in the automotive industry, Gus enjoyed helping people – and now he’s bringing that calling into his new role as an Advisor and how he lives with his condition. He looks forward to bringing his positive energy and thoughts to anyone and everyone.
Here he talks about his greatest obstacles and has some sage words for those newly diagnosed.
What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?
Being told you have an incurable disease sets you back ten steps. I thought, I had it all figured out and then this happens. I had worked so hard and was mastering my craft, teaching others through examples and walking them through the processes. I talk about my career because I was focused and determined to succeed. Not only for my family, but all those who believed in me through vision and aspirations. I enjoyed having fun, and being with those who enjoyed life. I miss the Friday night dinners and dancing until midnight. My workouts, running 4 miles every other day with my son releasing the tension and anxiety, it would clear my mind and would help me refocus my thoughts and follow-throughs. And how my family felt, their thoughts and concerns hurt the most. I believe whatever happens in the future will be even better, why do I say that because I have faith and their is no other person like me, Mr. Optimistic, bad habits are hard to break. I believe what we are doing now will create the compassion and awareness world wide. We are not alone.
If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?
I would say, listen and take it all in. Give yourself as much time to absorb everything. Understanding everyone is different and reacts differently. Your caregiver or partner will have as much or more input, simply because your thought process will take time. Have an open line of communication and don’t hold anything back, your concerns and how you are feeling mustn’t be held inside. Together and with family support will help you get through this. Have an open mind to trying different types of medical treatments. Your diet, is critical, and a holistic approach would benefit greatly.
How important has it been to you to find other people with your condition who understand what you’re going through?
It’s very important, simply because you can share your treatments or how you are dealing with it. Patient to patient interaction is vital and paramount, sharing your thoughts and concerns are key. Just talking to someone with the same illness you feel a sense of ease. It hard to describe but they know and understand exactly what’s happening. And for me, it’s half the battle I thought at the beginning it would be difficult but it’s not. So, I will run into the next question just a bit. PatientsLikeMe, and how wonderful this amazing site/ forum has helped me connect with those living with the same illness. Sharing our thoughts and treatments, and stories great stuff.
How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?
As I mention earlier, this site/forum is my medicine where I can share how I’m feeling everyday, your physical body and mind. It’s the best thing out there, no other site or forum compares to this site. Sharing your stories and what treatments have worked or not, getting real answers and asking the tough questions only to be answered by those living with this illness. A site, filled with so much information and helping you follow your own health chart. And tracking and inputting your conditions will help others on the site as well. Your words uplift others like no one else can, because they see themselves in you. I call it sharing your “wins” and then counting them each and everyday, reminding yourself of what you have accomplished. Positive in and positive out.
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