Tolerex

by: M.J. Purk

I started the AA diet in 2000. In the beginning I drank the Tolerex twice a day and noticed a huge difference. Prior to starting Tolerex, I could only attend school from 8am until 11am and could only be up in my chair for that amount of time. I also needed a nap every afternoon and then went to bed at 9pm. After starting Tolerex, I could attend school all day and not have to lie down until 7:45pm. I was also able to go on family outings without needing to come home early.
I also noticed an increase in strength. I am now able to move my hands and feet more than I ever have. I can move my foot and am able to kick my legs when positioned properly. I was able to use a standard joystick on my wheelchair for 6 months because of the Tolerex.
I believe it is because of the Tolerex that I was able to sustain my strength during multiple surgeries. I owe my life to the children and parents who came before me and perfected the AA diet.

Traveling with SMA

by: M.J. Purk

I love to travel! I have been told that because of my disability, I cannot and should not travel. Luckily, I'm not a very good listener when someone tells me I can't do something. My caregiver, Brenda, and I have been almost clear across the United States. We've driven from New York to Wyoming, and numerous other places in between!
Brenda and I do our traveling by van. We do this because of the amount of medical equipment that I have to take everywhere with me. Road trips take a great deal of planning for anyone, but when you add in medical fragility and all the equipment that goes along with it, you have to be prepared for any kind of situation that could arise.
When Brenda and I decide that we would like to travel somewhere, be it to my grandparent's lake house in New Jersey or to Brenda's aunt's house in Minnesota, we need to plan in advance. We must first figure out how long it will take us to get there. I can only travel five to six hours a day because of my health. If it will take us more than five to six hours then we need to find a hotel to stay in. The hotel must be accessible and have the option of a roll away bed or fold out couch; this is because I am transferred via a lift. The lift has to have room to go underneath the bed and most hotels have platform beds. Once we find the hotels and book a room, we need to prepare all my medical supplies. We need to make sure that I will have enough formula, feeding bags, ventilator tubing, and such, to make it to and back home from our vacation. We also must be prepared for the worst case scenario. If my gastric tube malfunctions then we need to be sure we have another tube available at a moments notice. Anything can happen so we need to be prepared for it.
After all the planning is through we wait, impatiently, for the travel date to arrive. A few days in advance Brenda begins to pack the van. She packs my medical supplies, our clothes, and other things we don't use on a daily basis. When the travel day finally arrives, it is a packing nightmare. Brenda and I have traveled together so many times that Brenda now has it down to a science. Everything has its place and won't move an inch until we reach the hotel.
I am the last thing to be loaded up. During the drive, I usually watch movies or listen to the radio. If it is summer, I sometimes listen to books on tape or CD. When we reach the hotel, Brenda has to unload all the necessities. By the time we reach our room, we are worn out.
When I travel, I get to see things and meet people that I never would have if I listened to the people who said I shouldn't and couldn't travel. Traveling is always an adventure, even if you are just going down the street. It is my favorite thing to do and I can't wait for my next adventure!

My Daily Life

by: M.J. Purk

I peer through the clear plastic of my mask to see if it is light out yet. I listen to the sounds in my room to see if Brenda, my caregiver, is awake yet.
"Brenda?" I say, "Can I get up now?"
"Be right there." She says. And so my day begins!
Brenda comes and takes off my mask and eye blanket. I like to sleep in total darkness so at night I put a bandana over my eyes. I guess you could call it a permanent side effect of too many hospital stays.
Brenda sits me up in my hospital bed and sets me up to do my two breathing treatments. I impatiently wait for her to get my tray and laptop computer so I can check my e-mail. Brenda gets my tray and laptop and props my elbows up with pillows and stuffed animals. I open my e-mail window, one-hundred and three new messages.
After reading all my e-mail, checking the SMA message boards, and finishing both breathing treatments, I'm ready to use my cough assist. I cough and cough and get up lots of mucus. Brenda uses my suction machine to clear the secretions from my mouth. I feel much better and am ready to have some breakfast now. I shouldn't be hungry though because I "eat" all day and night via a jejunostomy tube. I also have a gastric tube for medication and air venting.
After breakfast, it is homework time, my least favorite part of the day.
"Which one first?" Brenda asks, holding up my Physics and Precalculus books.
"Neither" I say, but I will end up doing both.
I am an eleventh grader in the honors program. Other than Physics and Precalculus, I also take English, Forensic Science, Choir, and American History. I like all my teachers, even though I only saw them nine days before becoming a homebound student.
After I finish homework, I go back online. I check e-mail again and instant message a few friends. I also listen to some music or watch television. I love to multitask! While I am doing that Brenda usually makes dinner, tonight it's Macaroni and Cheese, my favorite.
Brenda and I have dinner around 5:30pm and watch the news and Oprah until 8. By 8pm it's time for three breathing treatments along with my Vest. I use my Vest to loosen the mucus in my lungs. When I can tell where a plug in my lung is located, I use a percussor instead of the Vest. When using the Vest, I do three consecutive sessions, which take about an hour or so to do. Luckily, I can do my breathing treatments and the Vest at the same time. I watch my favorite television shows while doing my breathing treatments and the Vest to pass the time more quickly.
My father and his wife usually get home sometime between 8pm and 10pm. By then they are ready for bed since they both leave long before I get up. I tell them good night as Brenda gets me ready for bed.
While Brenda makes my Tolerex, my formula that goes through my jejunostomy tube, I listen to a book on tape or CD. Listening to a book helps me to relax and get ready for sleep. When Brenda comes back, she hooks me up to my new food and to my "belly bag". My "belly bag" is a drainage bag I use at night to let the air out that builds up in my stomach because of my vent.
After putting on my new food and my "belly bag", Brenda gets my mask on and fills up my humidifier for my vent. I get covered up and snuggle under my sheets, My eyes drift closed, as I drift of to dreamland, where, just like in the real world, anything is possible if you just believe!