youshouldgoanyway

My Top 10 Worst Things About Having Muscular Dystrophy

February 15, 2017May 26, 2019youshouldgoanyway

This list will be different for everyone but here is mine at this point in time. It’s interesting to look at this now and think about what I might have thought in the past and what I might think in the future. Muscular dystrophy is a disease that’s different for everyone who has it, even if you have the same types. However, here in my 30s, I’ve decided these are the worst things for me right now, in no particular order.

1. Having to make special arrangements for concert tickets and sporting events.
2. Not being able to rent regular (and cheaper!) vehicles when on vacation.
3. Not being able to go on some rides at amusement parks.
4. Difficulty getting in/out of pools and hot tubs.
5. Having to pee sitting down.
6. Changing clothes.
7. Having to pay extra for things like furniture delivery or close parking.
8. Having to rely on batteries to get around.

Okay so I only got to eight. Making this list might have been much easier ten, even twenty years ago. However now I look at it and it’s short. It’s full of minor things. It’s funny how the minor things are the hardest to get over. Why? Because they’re real and they’re now.

Some people might fill their list with items concerning the future. My list might have contained those items if I made it ten years ago. However I have learned not to worry about the future. Sure, I hope I am planning for it, but I don’t worry about it.

Otherwise this list would be full of depressing things. But look — it’s got lots of fun-related items on it, so I must be doing something right if I am running into these hurdles!

What are you learning?

February 14, 2017May 26, 2019youshouldgoanyway

When I was a kid, challenges annoyed me. I wanted everything to be easy. Sometimes it was, sometimes it wasn’t. Over time, however, I have discovered that when a challenge presents itself, there’s usually a lesson there. Now, even though I might not always enjoy a challenge, this perspective helps me push through. I thought I’d share my mental process when it comes to challenges in case it might help someone out.

1. Gain perspective

For me, the best way to do this is step back. Step out of my body, my situation, my head for a minute. Sometimes it helps to imagine that my life is on television. When I watch TV I usually have an opinion about what someone should do and it’s usually very logical. Imagining that my life is a TV show helps me gain a perspective that might otherwise be muddled in emotion or the moment.

2. Ask myself “Why is this frustrating me?”

When frustration goes without examination the chance to learn a lesson is lost. Discovering the source of frustration is key to determining what the lesson is. Am I frustrated with the situation or am I frustrated with myself? Sometimes a situation isn’t about what someone else is doing, it’s about what I am NOT doing. There are times when I get frustrated because I am not assertive enough to ask for something like an accommodation for my disability. Instead I get angry that the accommodation hasn’t been made prior to my arrival. (This is sort of the “everyone else should read my mind” line of thinking.)

3. Ask myself “What can I learn here?”

Currently I am dealing with a lot of paperwork associated with my dad’s passing. It is frustrating to me because I feel like it should be easier and I get irritated when I don’t know or can’t find an answer right away. But if I step back and think about it, I can actually learn a lot about how I can prepare my own situation and maybe help out others down the road. I can learn about how to plan my own estate, what tricks and tools I can use, and how I can make sure my loved ones are left with something when I go.

4. Tackle it.

The last step is to accept the lesson on your plate and decide to tackle it. By going through steps 1-3 I usually have a good definition about what I’m going to learn. I can remind myself of this every time frustration arises. A decision to tackle the lesson becomes easier and slowly but surely I will start to learn as I proceed. This is the reward. The best part is that even if a situation has a bunch of possible lessons, as long as you focus on learning one you will probably learn the others as well.

So if your disability is presenting you with some challenges, step back and think about the lessons you might be about to learn. It might make it a little easier to move forward and accept the challenges. Before you know it you’ll have learned a ton of new things about yourself and life.

Making (almost) everywhere you go accessible

February 10, 2017May 26, 2019youshouldgoanyway

People like to fuss about making sure I can get into their homes. I appreciate the fuss but it’s no longer necessary since I started carrying my own portable wheelchair ramp in my van.

If you have your own wheelchair ramp everywhere you go then there are few places you can’t get into (at least in the suburbs). Sure there will be the occasional exception, but I have found that the ramp I bring with me usually does the trick. It beats rolling up precarious-looking pieces of wood that someone tore off an old picnic table.

I have found that a folding 7 foot ramp fits perfectly in the back of my minivan (and in the middle section) and allows you the ability to get up three or even four steps if necessary. You might also want to carry a smaller single-piece ramp in addition to the folding ramp just in case. There are a few places I could have used a smaller ramp as well.

Overall it just makes thing much easier on you and your family and friends when you come prepared. Check out a bunch of wheelchair ramps now to find out more information.

A trick for getting up from a chair with help

February 9, 2017May 26, 2019youshouldgoanyway

There was a time when I could walk but could not stand up from a chair on my own. How frustrating is this? It’s like owning a Ferrari but not any tires.

For many months I relied on friends to lift me straight up from a seat — sometimes it would take two people. It felt like I needed to bring a portable crane around with me everywhere I went! During a work trip to Seattle, however, my boss came up with a sweet new way to leverage the function I still had without requiring someone to be able to lift all my weight.

I call it the “belt loop trick.” It works best when you’re wearing a belt, however. I learned this by having a few belt loops ripped right off my pants. Nevertheless the name stuck.

It’s a simple maneuver once you get it figured out. Practice makes perfect. First you position yourself in the seat as if you’re going to get up on your own. For me this involved putting two hands on a table or something and sticking my leg out to pivot on.

Next, someone grabs your belt at your side, near your hip. If you don’t have a belt then I suggest either grabbing a few belt loops or the top of your pants, again at your side. Essentially this is very close to your center of gravity. It also helps if the person places a foot near yours so it doesn’t slide away.

Finally the person pulls up on your belt and you go through the motions to stand up. Make sure they pull with a constant force instead of being jerky. Often they don’t even have to pull with all their might. You just need that extra boost.

Although this maneuver still relies on someone else, it expanded the number of people who could actually help me because you didn’t have to be a bodybuilder to lift me up. It’s also the maneuver I would use to get out of the manual wheelchair when I was being pushed around. The only drawback was the occasional wedgie, but overall this method worked until I started using a wheelchair full time.

Losing weight is such sweet sorrow

February 8, 2017May 26, 2019youshouldgoanyway

The last few years I have managed to maintain my weight, or at least my shape while staying conscious about my food intake. I know this because I still fit in the pants I bought two years ago for a friend’s wedding. However, the pants are bit bigger than I’d like to be in right now. It’s difficult to weigh yourself constantly when you use a wheelchair and don’t want to waste money and space on a wheelchair scale, so I’m not exactly sure what I weigh right now.

One of my goals for 2012 was to “lose weight” but I have had to get more specific about this in order to see action. So I decided upon the following three items:

Keep track of calories in a spreadsheet
Exercise 30 minutes a day, or more
Drink at least 64oz of water a day, preferably more

For #1, I created a simple Google spreadsheet that I enter everything I eat into, down to the cream in my coffee. My meals are not complicated and this is easy for me to do. I notice a few things about this process. First, at the end of the day I am much better about snacking. If I have leftover calories, I will pick things that fit within my 1250-1350 calorie daily budget. I know this saves me at least 200 calories a day. It’s important to remember that when you use a wheelchair that you don’t burn as many calories per day as a walking/standing person. But do consult a doctor about what you should be eating.

For #2, I moved my hand cycle right next to my desk. I also set up a great playlist I can access from my phone so I can plug in my headphones and go. I find that within 15 minutes of exercising I am actually enjoying it and the feeling is one of the high points of my day. I also keep track of my exercise progress on dontbreakthechain.com and it’s nice to look at the full calendar.

For #3, I push myself to drink four 16oz bottles of water in addition to any other drinks I intake during the day. I usually line up the empty bottles on a shelf next to me so I can keep tabs on where I am at. If I am falling behind and need some variety, I will drink diet Tonic water, or a diet soda, or add lemon, or mix in an iced tea mix to my water. Flavored waters are also great (but can be expensive).

Overall I am judging my progress based on how I feel and how I fit. I am feeling better overall. I am also fitting a little better too. It’s important to remember that this is a gradual process. With so many “instant” solutions to things, it’s easy to forget that losing a significant amount of weight takes work.