Pravana

Your video broke my heart, and it hit too close to home. My brother, who is 26 years old, has late stage Duchenne Muscular Dystrophy. He lost the ability to walk at the age of 10, on a ventilator 24/7 at the age of 18, has a gastrojejunal tube for feedings and medication, and he can no longer use his hands without assistance. Despite all the challenges, we try to make his life as normal and happy as possible. He always puts others before himself, and it absolutely breaks my heart to see him in that situation because he's one of my best friends and one of the sweetest, most genuine people I know. I don't want anyone to go through anything like we've experienced.

Here are my questions. Please feel free to disregard anything you don't feel like answering.

• I know that the progression of ALS is inevitable. Is there anything you hope to do or travel to before it becomes too difficult to do so?
• What are three of the best memories you've had so far?
• How long has your grandmother and mother had ALS?
• Are there any therapies that can be done to ease the progression/pains?
• Do you have any hobbies outside of photography?

Please don't ever give up hope. I know it'll be a long road ahead, but always remember that you've got friends, family, and even people you don't know rooting for you.

My brother is also 26 and has Duchenne Muscular Dystrophy. He hasn't been able to walk since he was 10, and has been on a ventilator & a gastrojejunal tube since he was 18 (and was actually hospitalized for 25 months before we managed to get him back home.)

Sorry if all my questions seem a little scattered, but feel feel to answer as much or as little as you want:

I was just wondering, do you require 24/7 nursing care at home or are you fairly independent in that regard? It's been very difficult to find quality, dependable nurses so that my parents are able to work and be able to afford our health insurance.

Do you still have the strength to function on your own without much/any assistance? Are you completely dependent on the ventilator? My brother's muscles are so weak and his hands are so contracted that we have to help him with/ do everything for him. Getting him out of bed for doctor's appointments is not an easy task either. So much equipment we have to take with us, and it creates a scene out in public when his alarms go off. Sadly, it's too difficult for him to go to college as much as he would like to. He has taken some online courses though, since he loves to learn about history. Has your MD created any challenges in your efforts toward your degree?

What is your prognosis/life expectancy? I know sometimes it can be difficult to maintain a positive outlook on life, but is there anything that motivates you to keep fighting every day? Do you have any pets? What goals do you have in life? Is there anywhere you'd love to travel to if given the opportunity?

I went when I was 14 (in 2005) back when Bob Barker was host. My brother has a neuromuscular disease with an average life expectancy of mid-late 20s, so they were nice enough to let my brother and I, along with my parents, attend a taping with VIP back stage passes. Because my brother and I were both underage, we had to sit in the back corner along the aisle (on the right side of screen.) We skipped the line outside where they were starting their interviews, and got ushered around the back way into the studio (possibly due to his wheelchair as well) so we missed out on that experience itself. We went to a filming in August and it aired in November. It's really quite a production. The studio is quite small, but they move the sets around very quickly while Bob Barker answered audience questions during commercial breaks. It was a very cool experience, and seeing your answers to these questions brings back the memories. I still have my name tag and VIP pass.

I just wanted to point out that it is such a memorable experience even just being in the audience. How long has it been since the episode has aired? The experience is something that will stuck with you for the rest of your life, and even though I went almost 10 years ago, people still ask me about it.