Living with ALS: Diagnosed at 22 Years Old

In 2005, my best friend Holly was diagnosed with ALS, also known as Lou Gehrig's disease. Holly was a regular 22 year old with hopes, dreams and goals for the future. She loved to socialize; party with friends and travel, but most of all, Holly loved to dance. She loved to dance so much, that she was going to go to school and become a dancer. However, within that same year when she decided to fulfill those dreams, she was then told she had ALS. Soon after that, her life changed completely, and many of the things that she loved doing and the goals she had planned, were stopped because of it.

Like many people, I didn't know what ALS was. When I learned more about the disease, it truly made an impact on me and the way I view life. ALS is a fatal disease, which there is no cure or known cause for. Not only has it greatly changed Holly's entire life, but it has also affected the lives around her; the lives she has touched, and of those who love and support her along this tough journey. I wanted others to be more aware of this disease, and also learn and enlighten themselves about it from someone who struggles with it everyday.

Holly was more than willing to do an interview with me so that others can be more aware of ALS, and know just how serious it is, and also how it can literally happen to anyone at anytime.

It is amazing how many people have never heard about ALS. Often, those who have, have either had a family member or friend who was diagnosed. For those who don't know what it is, please give us a brief description on what is ALS, and the effects it has on the body.

HA: ALS damages motor neurons in the brain and spinal cord. Motor neurons are nerve cells that control muscle movement. Upper motor neurons send messages from the brain to the spinal cord, and lower motor neurons send messages from the spinal cord to the muscles. Motor neurons are an important part of the body's neuromuscular system. The neuromuscular system enables our bodies to move and is made up of the brain, many nerves, and muscles. Things that we do every day - like breathing, walking, running, lifting stuff, and even reaching for a glass of water - are all controlled by the neuromuscular system.

Here's how the neuromuscular system works: If you want to make a fist, your brain first sends signals through upper motor neurons to the area in your spinal cord that controls your hand muscles. Then lower motor neurons in your spinal cord signal the muscles in your hand to move and make a fist. Over time ALS causes these motor neurons in the brain and spinal cord to shrink and disappear, so that the muscles no longer receive signals to move. As a result, the muscles become smaller and weaker. Gradually the body becomes paralyzed, which means that the muscles no longer work. However, someone with ALS, even at an advanced stage, still have all of their senses. The nerves that carry feelings of hot, cold, pain, pressure, or even being tickled, are not affected by ALS. The parts of the brain that allow us to think, remember, and learn are also not affected by the disease.

Although this disease can strike anyone, it is extremely rare in kids. According to the ALS Association, most people who develop ALS are between 40 and 70 years old. Only 2 out of every 100,000 people will get the disease each year. You can't catch ALS. The description and some content is courtesy of (http://www.kidshealth.org/kid/grownup/conditions/als.html)

What was going through your mind at the time when you were diagnosed with ALS? Also, how did people in your life react to the news?

HA: I had first went to a Neurologist to be checked out. I had an EMG done and he told me that in his opinion it looked like I had ALS but that he didn't feel comfortable diagnosing me due to my age so he then referred me to another Neurologist who did ultimately diagnose me. When I first heard that the problem could be ALS I was in shock. I actually ended up consoling my Mother. I knew during testing that whatever was causing my symptoms couldn't be good. In retrospect now I think maybe I had so many different emotions that I couldn't pinpoint one so I just kind of sat there. Everyone was devastated understandably and I think judging by their faces they may have felt helpless as did I. My family and friends have made things more bearable through this ordeal.

How has your life changed since you were diagnosed?

HA: This is a rather tough one because so many aspects of my life have been affected. Physically I am unable to do many of the things I want or need to do for myself. I have become extremely reliant on others for tasks that once seemed so simple. At first, it hurts your pride not to be able to do for yourself but if you really think about it, as babies we need care and as disabled or elderly folks we need care. The only difference is that we as adults are more aware of it and show vulnerability and humility and it makes it a more frightening experience. The more you learn to trust people on this level though, the easier it becomes to accept help from others. It's just another step you have to climb.

We know that having ALS definitely has an effect on the physical aspect, but how has it affected you mentally?

HA: My outlook on life has changed as well. I am more appreciative of the small things and of the people in my life. I stopped sweating the small stuff. When you look at the big picture in life small annoyances become less important and life becomes more valuable. I have my bad days. There are nights I ponder whether the small quality of life I still possess is worth all of the aggravation and fear. The answer to this question changes daily and is based entirely on my love for the people in my life. The road with ALS is not an enjoyable one, but it sure teaches you some things as far as experiences go. Faith is very important. You start questioning everything and wonder what will happen after your life is over. It is a very spiritual journey and you find out a lot about who you are.

Have your views on life changed since you've had ALS? If so, give us some examples on how those views have changed in comparison to before you were diagnosed.

HA: Well, they change daily. ALS is not fun to say the least but it does get you thinking. I used to party quite a bit and procrastinate. Everything can wait. There is always time. Is there though? I wanted to go to school, get married, have children, build a career; a life. Almost every one of my goals were ripped away with this diagnosis. All I can do is hope I get the chance and try to find my place and leave my mark on the world in whatever way I can. As I once heard someone say "You can think you have goals but who is to say that those plans are what God has in store for you?" Fate and destiny are remarkable things and everyone has a purpose. Everything is connected and everyone is affected by it.

Daily life; what is it like for you? And what are some of the obstacles you face on a day to day basis?

HA: I need assistance with rising from bed or a sitting position, bathing, dressing, cutting my food, brushing my hair, walking and many other things. I now use a raised toilet seat that I still need help arising from. I use an electric powered recliner that basically puts me in a standing position to get up and a bath chair to sit on to bathe. I have lost the ability to do a lot of the things I once loved, but on a lighter note I am still very appreciative of the hobbies I still have left and I have even made a few new ones.

What has been the toughest thing you've had to face so far with this disease?

HA: I would have to say that it is a cross between not being able to dance or walk and finding out who my true friends are. I loved dancing and I lost quite a few people I originally thought were friends. However with every negative there is a positive. The positive is that this situation has made me that much closer to the family and friends who have stuck by me.

How do people react when you tell them that you have ALS?

HA: Most of the time, shock. People figure I am too young to have ALS. I am 24 years old and was diagnosed at 22. ALS more commonly hits people who are middle-aged to the elderly. Many people do not know what ALS is or what it means, so I do a bit of explaining. I don't mind it though. I'd prefer people were more aware of it and encourage them to ask questions.

Sometimes, people say because of the decisions they've made in the past, the actions they took or the person that they were, resulted in them getting sick, or having an unsatisfying life. They wish they could go back in time and do it all over again; make different decisions, hang with a different crowd etc. Do you sometimes wish that, or do you feel that this was meant to happen no matter which decisions you made in the past?

HA: I think my path was predetermined. I think I would have gotten ALS no matter what I did in my life, though I could be wrong. I sometimes wish I would have been more productive with my "good time" but there was no way for me to know that it would end. I think in some cases people bring bad situations on to themselves but in other cases it is simply a matter of fate or bad luck depending on what you believe in.

The life expectancy of ALS patients is usually 3-5 years, however in some cases; some ALS patients live for much longer than that. How does it feel to have that sort of time frame put on your life?

HA: I feel like my life is a pendulum between life and death. It feels like the remainder of your life is based on a timer. The frightening aspect of the timer theory is that you're not the one who set the timer and you have no idea when it is going to go off or why. All you can do is live one day at a time and try to appreciate what you have left.

Who or what inspires you? What keeps you going day after day?

HA: My family and friends, hands down. They love me, want me, and need me here. I want to try to be here as long as I can for them assuming my soul is strong enough to handle the twists in the road up ahead. I do not fear death, it's more like I fear what I will miss if I left this earth. The good times with the people I love is precious to me; awareness as well. That is what keeps me going.

What are some of the things you enjoy doing, that help you occupy your time, and put you more at ease through this?

HA: Some of the things I still enjoy doing include reading, writing, doing crossword puzzles, singing, surfing the web, watching people fish, flea markets and going to the park when I am able. I also enjoy listening to music, watching movies and spending time with friends and family.

When do you feel your best?

HA: I feel my best early in the morning, and late at night. Early, it is because I'm rested and rejuvenated. I've rested my body, so I am more functional physically. Late at night, is more of a mental thing. It's my alone time, it's time to gather my thoughts and clear my head.

If you were given the chance to have one day, and one day only of being ALS free, what are some of the things you would do?

HA: I would have everyone that I love with me. I would wake up, make breakfast, take my own shower, dress myself, go to a park or for a picnic, go dancing, go for a walk, dinner etc. with the people that mean the most to me. The simple things that most people take for granted.

What are some great sites to check out, for those who'd like to learn more about ALS?

HA: Most commonly I use (www.alsa.org, www.neurologychannel.com/als, http://compassionatecareals.org, www.projectals.org) and (http://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis); all great websites that are very informative and helpful.

Finally, what do you say to those who often take many things in life for granted?

HA: Don't. You never know when your timer is going to go off because you have no control over it. Do all of the things you want to do, now. Don't put off experiences you want to have because you are too caught up in your everyday routine. Stop to smell the roses. Life is short. If you had 1 day left, how would you spend it? Do those things now. Everyone is always so busy preparing for their lives that they forget to actually live it. Just live.

*I want to thank Holly for sharing her life with us. You are the strongest, and most inspirational woman I've ever known.