Tips and Tricks: Out and About
I’ve talked before about tips and tricks for making sure one’s home is safe, for taking care of chores, for cooking in the kitchen, and for keeping clean and healthy. Today I thought I’d talk about some of the things I do when I leave the house to go out with friends, do errands, and enjoy myself.
One concern I’ve had since being diagnosed is driving. While I have no issues now, I have anxiety that I will suddenly find it challenging when I’m behind the wheel. Recently, we bought a Tesla. Part of our thinking was its safety and self-driving features. It’s an amazing car, I must admit. When I was last at the neuromuscular clinic, they told me of two local organizations that test one’s ability to drive and give guidance on anything that might need thinking about. I don’t think I’m quite there yet, but I’m glad to learn it’s possible to be professionally assessed and then develop workarounds with your care team. Ask your occupational therapist for a referral. Do an Internet search in your community or ask your care team if you think you’d like to be assessed.
Handicap stickers for your car are very handy, even before you need assistive mobility devices. The website of your state’s DOT has a form you can fill in and take to your doctor for signature. Since there is no cure and no treatment for IBM, you can usually get a permanent plate or a permanent placard.
Opening bottles in the kitchen is a problem, as I’ve mentioned, and it’s a problem on the road as well. I live in a desert climate and need to keep hydrated. Water bottles are needed in every nook and cranny: the car, the backpack or purse, the house, and the destinations. A trick is to carry wide rubber bands with you (throw some in your purse, glove box, or wallet) to put on the lids when no other option is available. It makes it easier to twist the cap. If that is still difficult, put another rubber band around the bottom of the item and hold on to both rubber bands as you twist. As you can see in the picture to the right - these rubber bands give you the grip you can’t quite get on your own. And they’re small, so easy to tote along on almost any occasion.
Because I have trouble swallowing, I keep clean paper napkins in my purse. When I go to a restaurant and they give me a cloth napkin, I put the paper one in my lap in case I start to choke. It is embarrassing to hand a napkin to a waiter and ask for another one because it is holding part of your dinner. When this was first a problem, and I had not learned how to deal with it, I even carried airplane sick bags with me whenever I ate out.
Hotels claim to have handicap rooms, but beware of those. I went on a cruise once and requested a handicap room. What a shock to find a huge lip at the entrance and a door not wide enough for my mom’s wheelchair. When I go to hotels, I call the hotel and ask these questions:
Is there a walk-in shower, or is it a part of a tub?
Is the commode handicap-height? If it is not, be sure to take your walker if you have modified it to have a toilet seat inserted.
Is the room on the ground floor, or is there a full-size elevator?
Credit Cards get stuck in my wallet. I see wallets advertised that kind of pitch them out, but the people I know who have them tell me they really don’t work like the ads say they will. My husband got tired of me handing him my wallet and saying, “Could you get that card out for me?” so he punched a hole in each card and put a short chain through the hole so I could just grab and pull. I have seen others use tape the same way. Add a piece to the top of the card with a tab sticking up (you can even label it if you want), and then pull on the tape to release it from your card carrier. Watch out that you don’t punch through or tape over any needed QPC-type codes or important numbers. My daughters and I went to a museum not long ago and they still used a machine that required folks to swipe their cards, rather than using a chip reader or even tap technology. So keep that in mind when you’re punching your holes. Library cards for keychains are perfect examples of this.
Opening heavy doors has been a problem for me. Many times it is in a medical facility. The building has a handicap button to press, but getting into the actual doctor’s office does not. I put my foot in and then throw my shoulder into it to get in. You can really start to appreciate what organizations have done to improve accessibility, such as automatic doors, etc.
Friends, of course, want to help me in any way they can when we are out together. I’ve learned I need to be patient about it. Sometimes I don’t feel that I need help or special consideration, but I remember that it makes my loved ones feel good when they are helping me. It never hurts to let go a little bit now and again and let others take care of you. That said, it’s a good policy to talk to your friends about your needs, and to let them know of the various workarounds you are using, so they are not confused or surprised, and they don’t jump in too early to offer help.
If you have other tips to add, please feel free to do so in the comments section. We can all help each other with this disease.
I very much appreciate you reading and subscribing to my blog. It gives me a place to talk to people who understand what we are all going through.
“All we have to decide is what to do with the time that is given us.”
This blog post is based on personal experiences and is not meant to provide medical advice.
Always consult your healthcare professional for personalized guidance on your health journey.
