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| Bryan’s Log 11/04/04 “Wake up and appreciate everything you encounter along your path….Tune into the sunrise, the little children, the laughter, the rain and the birds. Drink it all in…there is no way to happiness; happiness IS the way.”—Wayne W. Dyer I wanted to get this update out before left for Maui, but as with any vacation, we seem to get real busy before leaving. So I’m in Maui racing the biggest race of the season, the Xterra World Championships, and I’m having what I consider a great race for me. About 8 miles into the mountain bike, I had a flat front tire. In two years of racing I never had a flat during a triathlon race, but the terrain in Maui is very unique. The rocks are sharp and thorns are everywhere. The place looked like a war zone at times with people having all sorts of tire problems. I also had problems with my CO2 air cartridge. I opened the valve to air up my tire and nothing came out. Luckily for me another guy running by with a broken chain asked me for a chain tool. I gladly helped him and he let me borrow his air. We both got back into the race, but way too much time had elapsed for me to finish where I thought I could. Believe me I was not disappointed in my performance. I still gave it everything I had. I pushed even harder than I normally would. I finished the race still alive and happy to survive probably the most difficult course Xterra has ever created. This race wasn’t about meeting my goals, but more about overcoming a difficult situation and not giving up. This is also a great way to view life in general. When a difficult situation arises just take it as a part of life and be happy knowing you will overcome it. Too many times we focus on the negativity caused by the difficulty and let it get in the way of overcoming it. The best part of falling down is getting back up. How can a person expect to become stronger in character if we don’t overcome our difficulties? Two days before the race I called home to talk to my mom and make sure all was well. I found out she fell pretty hard while trying to use the bathroom. Falling is very common to someone with HD, especially if they’ve had it for 18 years. She decided to stop eating and drinking so she would'’t have to use the bathroom and fall again. The rationale of someone with HD isn’t always the best. I was very concerned because she was losing weight fast and no matter how tenderly I asked her to please eat for me, she wouldn’t. One of my worst fears is that something bad would happen to her while I was traveling. I hadn’t traveled out of the west coast all year because of it, but here it was happening while I was in Maui. I had to race with this concern on my mind. Luckily, I made it home and she was eating again. She recently turned 55 and I was glad to make it home in time for her BD party. She was in good spirits and happy to hear about my Maui trip. I’m very thankful to the HDSA for helping support my efforts. At last year’s event, I received the first Xterra Warrior Award at the pre-race dinner. It was such an honor. I was glad to see this year’s award go to a very worthy individual. Willie Stewart received the recognition this year and it was great to be there to congratulate him. For those who think they can’t overcome difficulties, Willie does the whole race with only one arm! I can’t even imagine swimming or mountain biking with one arm. He is truly deserving of the recognition. It was great to see Jamie win the Pro Women’s race. She has worked hard and truly deserved winning, especially after having to overcome crashing twice on the mountain bike. I’m so thankful to all my friends and fellow team members who participated and helped me make it to Maui. I couldn’t have trained all those long hours without their help. We all wore uniforms supporting a cure for HD all season long and it was great to have so many of us make it to Worlds. Bryan |
A Warrior’s Tale of Survival: Bryan Medrano
I’ve known since I was 13 that Huntington’s Disease(HD) is a part of my life. I tested positive for HD in November 2002. To make it simple the
disease kills brain cells similar to what happens to people with Alzheimer or Parkinson Disease. Finding out you’ve inherited a slow progressing
neurological disease is not easy. I’ve watched my mom slowly withering away for the past seventeen years. The disease robs you of your mind,
agility, freedom, and spirit. As of this writing I’m 31 years old. My CAG repeat is 47. The CAG repeat count is presented when receiving the DNA
test results. Previous statistics of people with a similar repeat tell me there’s a 95% chance of me developing symptoms over the next four years. I
honestly believe I can beat the disease that currently has no cure. I take great care of my health through nutrition, exercise, and spirituality. This is
my story of survival and spiritual awakening.
The Cause
It’s rare for someone with the disease to have the opportunity to talk about it. The past has taught those of us affected by the disease to feel
ashamed and hide our feelings from the outside world. “Don’t tell anyone so people won’t treat you differently.” I guess I don’t always like doing what’
s considered normal especially since I consider myself abnormal anyway. I tell everyone I can about my disease. I figure I have nothing to lose
since holding it in only caused me to feel bitter inside. How can I get help for the disease unless I let everyone know about the pain associated with
it? While at risk I often felt very angry inside as if no one really understood my situation. This had negative effects on my life and all my personal
relationships. Even now when I tell people about the disease no one seems to understand how it feels inside, but I feel better sharing it. To live with
the constant insecurity of how people might wonder, “Is Bryan showing symptoms yet?” I can’t blame them if they do since I search for symptoms
all the time. Any common memory lapse or muscle twitch can easily cause concern for anyone at risk or positive. Before I tested, I used to think I
would face discrimination if I tested positive. I think I’m still insecure about it, but most people honestly treat me the same or better than everyone
else because I’ve shared my cause with them. I tell them how I’m taking great care of myself and I honestly believe I can hold off the symptoms for a
while, long enough hopefully for science to find an effective treatment. I was tired of hiding from the disease. I don’t like feeling like a mouse hiding
among the darkness. I’m not afraid any longer. This is who I am. I’m glad to be alive and I’m going to make the most of every day that I can.
I found something else I never expected after testing positive. For a while I felt a sense of doom had come over me. I had to face the thought of
immortality. I came to understand I’m not invincible and that I will die someday. I began to understand the value of life and how I was greatly taking
advantage of it. It’s funny all the things I used to stress about become so minor when your facing death. I love life. I love everyday waking up feeling
great that I’m still breathing. I love exercising with friends. I love spending time with my mom. I love my relationships with friends and family. I feel
like a lucky man to have so many people who honestly care about me. I’m honestly free from many of the insecurities I used to have. I stopped
drinking alcohol. I don’t waste as much time worried about being cool. I’m secure with who I am and feel blessed to have the opportunity to see the
world from my point of view. I forgive people very easily. Why hold grudges when life is so precious? I’m not in a hurry in a world that is. No matter
what happens negative during the day, as long as I learn to live in the moment, it will be ok. I easily let go of things that used to bother me.
Mom
My approach to life is probably very unique, but it’s the best way I can handle the devastation of the disease in my family. I still have many struggles
inside most people don’t see when they see me smiling so much. I have a ton of guilt my mom is still dying and there’s nothing I can do about it. I
visit her whenever I can. I just try to put on a positive smile and let her know how much I love her. Testing positive for the disease has actually made
me closer to my mom. I know how to look beyond the symptoms and find the mom I remember growing up. When I take the time to look, she’s still
there. Her reaction to my gift of love is truly miraculous. She tells me I help her forget her pain. If you look at her you would think she’s talking about
some physical pain since she spends most of her time indoors on a couch, in bed, or in her wheelchair. She actually has more emotional pain from
the depression often linked to having the disease. When I think of her and others suffering from it I can imagine what they are going through. I’m
always amazed when I see a smile on her face. She is truly my hero.
Ashley
I’m very fortunate to have my HD sister Ashley in my life. It’s important to have others around me who understand the pain of HD. Ashley tested
positive for the gene when she was only 18. I met her soon after and found out I was totally afraid of getting tested. I used to think I was tough, but if
she could conquer her fear so could I. Now we feel lucky to have tested positive and at least we can share many thoughts and feelings about. Lift
each other up when needed. I recommend anyone to talk to others about the disease. Don’t hide from it. You’d be surprised how it can liberate you.
We are both still afraid, but it helps to know we aren’t alone.
HD Person of the Year 2004
I was very honored to receive the HD Person of the Year Award this past HDSA national convention in St. Louis. I never imagined I could affect so
many peoples lives in a positive way. This recognition has inspired me to make even more efforts to fight for the cause so that all of us affected can
face the world unafraid of discrimination and to live a more meaningful life. I always feel so comfortable surrounded by my others affected by this
terrible disease. I am looking forward to a great year to come and for the next national convention.
Xterra Warrior 2003
I’ve known since I was 13 that Huntington’s Disease(HD) is a part of my life. I tested positive for HD in November 2002. To make it simple the
disease kills brain cells similar to what happens to people with Alzheimer or Parkinson Disease. Finding out you’ve inherited a slow progressing
neurological disease is not easy. I’ve watched my mom slowly withering away for the past seventeen years. The disease robs you of your mind,
agility, freedom, and spirit. As of this writing I’m 31 years old. My CAG repeat is 47. The CAG repeat count is presented when receiving the DNA
test results. Previous statistics of people with a similar repeat tell me there’s a 95% chance of me developing symptoms over the next four years. I
honestly believe I can beat the disease that currently has no cure. I take great care of my health through nutrition, exercise, and spirituality. This is
my story of survival and spiritual awakening.
The Cause
It’s rare for someone with the disease to have the opportunity to talk about it. The past has taught those of us affected by the disease to feel
ashamed and hide our feelings from the outside world. “Don’t tell anyone so people won’t treat you differently.” I guess I don’t always like doing what’
s considered normal especially since I consider myself abnormal anyway. I tell everyone I can about my disease. I figure I have nothing to lose
since holding it in only caused me to feel bitter inside. How can I get help for the disease unless I let everyone know about the pain associated with
it? While at risk I often felt very angry inside as if no one really understood my situation. This had negative effects on my life and all my personal
relationships. Even now when I tell people about the disease no one seems to understand how it feels inside, but I feel better sharing it. To live with
the constant insecurity of how people might wonder, “Is Bryan showing symptoms yet?” I can’t blame them if they do since I search for symptoms
all the time. Any common memory lapse or muscle twitch can easily cause concern for anyone at risk or positive. Before I tested, I used to think I
would face discrimination if I tested positive. I think I’m still insecure about it, but most people honestly treat me the same or better than everyone
else because I’ve shared my cause with them. I tell them how I’m taking great care of myself and I honestly believe I can hold off the symptoms for a
while, long enough hopefully for science to find an effective treatment. I was tired of hiding from the disease. I don’t like feeling like a mouse hiding
among the darkness. I’m not afraid any longer. This is who I am. I’m glad to be alive and I’m going to make the most of every day that I can.
I found something else I never expected after testing positive. For a while I felt a sense of doom had come over me. I had to face the thought of
immortality. I came to understand I’m not invincible and that I will die someday. I began to understand the value of life and how I was greatly taking
advantage of it. It’s funny all the things I used to stress about become so minor when your facing death. I love life. I love everyday waking up feeling
great that I’m still breathing. I love exercising with friends. I love spending time with my mom. I love my relationships with friends and family. I feel
like a lucky man to have so many people who honestly care about me. I’m honestly free from many of the insecurities I used to have. I stopped
drinking alcohol. I don’t waste as much time worried about being cool. I’m secure with who I am and feel blessed to have the opportunity to see the
world from my point of view. I forgive people very easily. Why hold grudges when life is so precious? I’m not in a hurry in a world that is. No matter
what happens negative during the day, as long as I learn to live in the moment, it will be ok. I easily let go of things that used to bother me.
Mom
My approach to life is probably very unique, but it’s the best way I can handle the devastation of the disease in my family. I still have many struggles
inside most people don’t see when they see me smiling so much. I have a ton of guilt my mom is still dying and there’s nothing I can do about it. I
visit her whenever I can. I just try to put on a positive smile and let her know how much I love her. Testing positive for the disease has actually made
me closer to my mom. I know how to look beyond the symptoms and find the mom I remember growing up. When I take the time to look, she’s still
there. Her reaction to my gift of love is truly miraculous. She tells me I help her forget her pain. If you look at her you would think she’s talking about
some physical pain since she spends most of her time indoors on a couch, in bed, or in her wheelchair. She actually has more emotional pain from
the depression often linked to having the disease. When I think of her and others suffering from it I can imagine what they are going through. I’m
always amazed when I see a smile on her face. She is truly my hero.
Ashley
I’m very fortunate to have my HD sister Ashley in my life. It’s important to have others around me who understand the pain of HD. Ashley tested
positive for the gene when she was only 18. I met her soon after and found out I was totally afraid of getting tested. I used to think I was tough, but if
she could conquer her fear so could I. Now we feel lucky to have tested positive and at least we can share many thoughts and feelings about. Lift
each other up when needed. I recommend anyone to talk to others about the disease. Don’t hide from it. You’d be surprised how it can liberate you.
We are both still afraid, but it helps to know we aren’t alone.
HD Person of the Year 2004
I was very honored to receive the HD Person of the Year Award this past HDSA national convention in St. Louis. I never imagined I could affect so
many peoples lives in a positive way. This recognition has inspired me to make even more efforts to fight for the cause so that all of us affected can
face the world unafraid of discrimination and to live a more meaningful life. I always feel so comfortable surrounded by my others affected by this
terrible disease. I am looking forward to a great year to come and for the next national convention.
Xterra Warrior 2003