Author: youshouldgoanyway

Staying warm with muscular dystrophy

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I am in a constant battle with family and friends over indoor temperatures. During winter I am freezing. During summer I am freezing. Basically I am always freezing and sometimes bloody after a hardcore fight over the thermostat.

Physically I notice that my body works better when it is warm, so I have come up with some personalized solutions to keep myself defrosted and thought I would pass them along. These are all fairly easy to implement and don’t impact others in the house as much as cranking the heat does. They’re also very low cost.

1. Space Heaters
The main thermostat in the house I share with my sister back in WI during the summer is upstairs. Combine that with the fact it’s a tri-level and I am in the lowest level and I am constantly shivering. Tri-level houses have notoriously poor HVAC systems. Hot upstairs, cold downstairs, and sometimes comfortable in the middle. Usually, however, I am the only one downstairs and I did discover that a good space heater can help me get control of the temperature downstairs. I recommend getting one in each room you spend the most time, however I have a small one on wheels in my office that I can roll around if necessary. It’s just a pain to unplug and plug back in all the time. But it’s light, quiet, and turns my office into a sauna. You can also put a small one right at your feet and nobody else in the room even has to feel it.

2. Electric blankets
I like to plug in an electric blanket and throw it over my legs if I know I am just going to be watching TV or something for a while. It’s easy to have an electric blanket or an electric throw on the couch or recliner that’s already plugged in and ready to go — just flip a switch and it’s warm in no time.

3. Electric mattress pad
I had one of these on a bed during high school and it was wonderful. I did discover that it could get too hot sometimes. I do recommend trying a warming mattress pad, however, because you might want full-body coverage. But for me, I discovered it was my feet that were usually cold at night. To counteract this, I fold a regular electric blanket in half and use it under my sheet on the bottom half of my bed. It keeps my feet warm and doesn’t overwhelm me during the night like a full heated mattress pad does.

4. Heat lamp in the bathroom
I do not have one of these but whenever I stay in a hotel that has one, I feel like a toasty chicken McNugget just waiting to be served. It makes the transition from a nice hot shower to a colder room-temperature bathroom much easier to bear. I do, on occasion, roll my portable space heater into the bathroom to heat things up while I shower and do plan on getting one specifically for the bathroom sometime in the future.

5. Hot water bottles / Heating pads
When I am traveling and don’t have an electric blanket or space heater at my disposal, I like to fill up a water bottle with hot water from the faucet and keep it on my lap. I have also packed a portable heating pad before, which works great for travel as well.

UPDATED 9/30
6. Heated clothing!
I just got a heated vest and love it. It was not cheap, but I know I will get use out of it. There are also heated pads, gloves, and other items that run off batteries. Check out my heated vest review here.

I would love to get a heated seat for my wheelchair and there is a power converter that you can get to plug things in. I am not sure how long this would last or if it would drain my battery completely but it’s something I’d like to try eventually.

Say no to underwear

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I’m not afraid to say it — I haven’t worn underwear in the years since I started using a wheelchair. I implore anyone who thinks this is unacceptable to try pulling up your underwear and pants while in a seated position and get back to me. (Remember, you can’t lift up both cheeks at the same time, either!) It’s a pain in the ass. Finally I was like, “Why do I keep doing this?!?!!” After all, we all know Britney doesn’t wear any. Why should I?

Either the underwear would bunch up and make it difficult to get everything in place, or I’d end up having to do the pulling-up hassle twice — first pull up underwear, then pull up the pants. It’s just such a waste of time.

Maybe I am not aware of the overall advantages of wearing underwear, but I have discovered a couple advantages to not wearing it, aside from making getting dressed much easier:

1. Cuts down on laundry.

2. Easier access for going to the bathroom.

3. Saves time.

4. Less packing when you travel.

I am sure there are others that I just can’t think of right now. One might be that you can get a wardrobe filled with brown and black pants and never have to see skid marks ever again. But I digress.

Pants and Intimidation

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Muscular Dystrophy PantsUp until 8th grade I played basketball despite having muscular dystrophy. One of the lessons I took from that came from the pep talk our coaches would always give us before each game. If we were playing an especially tough opponent they would remind us that “These kids put their pants on just like you — one leg at a time!”

This statement had always held true for me and helped me to make some potentially intimidating experiences much less so. However when I started using a wheelchair I realized it was one big lie — not everyone puts their pants on one leg at a time! For me, the best way to put on pants is two legs at a time!

I’m not sure it makes me more intimidating but you definitely do what you have to when it comes to adapting to a disability. Hopefully I can run into my old coaches sometime and share this piece of knowledge.

Wheelchair Accessible Waikiki

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Diamond Head

I have a love/hate relationship with Waikiki. There are some nice beaches and places to roll, but then there are some inconveniences that can make you crazy if you use a wheelchair. Keep in mind, I’m speaking as a power wheelchair user too!

First, the good. One of my favorite places to roll around is Fort DeRussy Beach park. There are many winding paths and a long stretch practically right next to the ocean that goes from the Hilton Hawaiian Village past several hotels then sends you back to Kalia Road. Also right nearby is the Army Museum which was free the last time I went there. Across the street is another nice place to roll around — the Ainahau Triangle and adjacent park with more paths and lots of trees and flowers. I like it because the paths are clean and wide and you’re not usually competing for space with walkers. On the other side of Waikiki is another area I like to check out. Using the Honolulu Zoo as a general area marker, there’s also the Aquarium and a long stretch of beaches that connects up to the shops and hotels at the east end of Waikiki.

In between is where the hassle comes about. The newer “sidewalks” in Waikiki are made from this decorative stone that is really annoying to roll over in a wheelchair. The older walkways were smaller, but flat tiles. Thankfully there is a very long stretch of this remaining (on the north side of Kalakaua) which I prefer to use to go back and forth in Waikiki. However the issue is that the curb cuts on that side of the street are not consistent and there are a couple that could shoot you out into traffic if you’re not careful. Another issue is foot traffic. During the day it’s manageable but at night you can have street “performers” and vendors that crowd the space and make it difficult to navigate in a chair without running over some toes.

A workaround to the issues, however, is the bus system. There are several buses that run up and down the streets Waikiki. I will hop on/off the 8 bus quite frequently and this same bus will actually get you out of Waikiki and over to Ala Moana Shopping Center if you need a quick escape from Waikiki. All the buses in Hawaii are wheelchair accessible and affordable. You can get a visitor pass from most ABC stores.

Parking in Waikiki can be a pain in the ass, to be frank. There is a great parking lot next to the Honolulu Zoo which has accessible spaces, however if those are full then you might want to try the side streets instead of the parking structures. Not only are the structures expensive but many of them can be cramped if you need extra space.

As for the hotels, the Hilton Hawaiian Village is right near Fort DeRussy and has nice grounds. However if you are pushing yourself you might find getting around this mini-resort tiresome. There are several hotels on the beach and the Sheraton Waikiki is in the middle of Waikiki with a nice beachfront area. If you’re on a budget, I have stayed at the Aqua Palms — a boutique hotel across from the Hilton — for generally affordable rates. If you do stay there, check out Wailana Coffee House right next door.

Overall it’s worth exploring Waikiki for at least a few days on your trip to Hawaii. If you prefer a more relaxing setting on Oahu then go to Ko Olina or Turtle Bay, especially if you want accessible hotels but not quite as much hustle and bustle.

No, I don’t have MS and I’m not from Minnesota

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People are funny. Whenever I tell someone I have muscular dystrophy, inevitably two seconds later they refer to someone they know with MS. It happens ALL THE TIME. Just the other day in the laundry room a stranger asked, “May I ask what happened?”

“I have muscular dystrophy,” I said.

“Oh, I have a boss that has MS. She takes lots of pills for that…” replied the lady.

I usually don’t correct someone when they make a mistake, especially if I don’t plan on ever seeing them again. Maybe I should. I usually correct people when they make the same mistake with where I was born.

“Oh I have relatives in Minnesota!” they’ll say just seconds after I tell them I am from Wisconsin. Even some people I’ve known for a long while still think I am from Minnesota originally. Whenever it comes up I don’t hesitate to correct them, “I am NOT from Minnesota!!!! The Vikings SUCK!” I will remind them in my most understated Wisconsin accent. I don’t really mind, but it’s fun to tease them.

I guess when it comes to diseases, maybe it’s not the best comedy material. But it would be nice to somehow politely point out that MS is not MD without implying “You’re such an idiot — I’m really not sure why you think muscular dystrophy would be abbreviated MS!”

It’s probably just some weird wiring in the human brain that it happens so often. Nevertheless I am still working on some answers to try out.

God knows I’ll get another chance soon.