Tag: cane

The Gift of Mobility Aids

My mom is 80 and has a lot of trouble walking. Pre-pandemic and post-pandemic, I would love to be able to take her to events and places that we can enjoy together. But I can’t physically assist her because of my own disabilities. She has finally started using a cane full-time, but only because she is completely unable to get anywhere without it. She also has a rollator, which would give her and me the freedom of going on outings, but she very rarely uses it, especially in public places. This severely limits our activity choices.

Almost every time I have asked others to help encourage her to use her rollator more often, I’m met with resistance. Pretty much every time the response is that when elderly people start using rollators, they quickly deteriorate. My guess is most likely due to emotional and psychological factors involved in needing one. But ummm…wait. What?!

How sad. This may very well be a common occurrence, but…

It doesn’t have to be. Like with many other issues and things, we need a perspective change.

From my own experiences with mobility aids I understand the mental and emotional struggles. After over a year of intense pain in my back, si joints, hips, etc. I wondered if a cane might be necessary. So for the next month I struggled with the following questions:

Do I really need one?

What will other people think?

Will my doctors think I’m being ridiculous?

How will my friends and family feel about my cane?

Will I embarrass my middle schooler if I use my cane during school functions?

Will people think I’m too young for a cane?

Am I overexaggerating my physical disabilities?

How do I even use a cane?

How will I carry things?

Etc. etc.

I read a comment posted recently by one of the insightful disability activists I follow. I wish I could remember which person so I could give them proper credit. But basically they said (in paraphrase) “If you are wondering if you would benefit from a mobility aid, you probably would.” That is such a great perspective shift.

After a month of thinking and worrying and agonizing and talking with my therapist, in December 2018 I finally ordered my first cane – a super cute walking stick by Switch Sticks.

For the first week I used it only around my house. And I watched a lot of YouTube videos about how to properly use a cane. First because I’ve always been a very uncoordinated person, and I needed a lot of practice. But also because I was still so very worried about what other people would think. I was 41 and otherwise healthy looking on the outside.

Finally I ventured outside of my house with it. I took it to my therapy appointment. That was quite the achievement! And I’ve never looked back. I know this is not everyone’s experience, but I actually received only positive comments. “That cane is so cute! I have MS and have been looking for one. Where did you get it?” “You are the most adorable cane user I have ever seen!” And lots more comments and love in real life and on social media. Many thanks to those who helped me on my journey! Even the curious questions: “Do you mind me asking why at your age you need a cane?” I use as opportunities to educate about psoriatic arthritis and other autoimmune diseases.

Since that time I have taken advice from my physical therapist and switched to an arm crutch. This change was no big deal for me (minus being sad about trading in my super cute stick). And it’s easier on my hands, elbows, and shoulders.

I also added a rollator to my mix of mobility aids in 2019 and a wheelchair in 2020. My rollator was really hard at first too. But, I’m so thankful for my physical therapist who gave me the “permission” I needed to get my rollator. And now I gladly use it just about every day. I can no longer carry the gear needed for my job – laptop, medical supplies, etc. It’s a lot, and so much easier now that I can put it on my rollator and wheel it and myself from my car to my office.

My wheelchair is another transition that I’m still working through. And I don’t need it very often, especially since starting Remicade infusions. Mostly in the mornings at my house before my joints and tendons warm up. I worry though about the stares from people, how my family feels about it, and whether I really need it. But, on my birthday this past year, I finally ventured out of my house with it. My husband took me to Baltimore City, and after a night of fun (just going to a restaurant – not anything super crazy. Lol.), the next morning was tricky for me. And my wheelchair was so very helpful that morning for breakfast at the hotel and then the trek from the hotel to our car in the parking garage. And then I used it again for an errand run on our way home. Go me! I’m really proud of myself for that. Both were successful experiences.

In short, mobility aids have been so very empowering for me and have helped bring more joy and opportunities into my life. I would have missed out on a lot without them. They allow me to keep up with the job and other activities I love. I am able to care better for my family. So, I present some more helpful questions to ask yourself when considering a mobility aid (even for the elderly):

Am I missing out on fun events because of my mobility issues?

Would mobility aids give me more freedom?

Could I do more and/or go more places with the use of mobility aids?

What would my life look like if I wasn’t concerned about what others think?

Am I often relying on the help of significant others because I don’t want to use a mobility aid?

Am I considering the use of mobility aids? If so, they would likely be helpful. What other questions can you think of that would be helpful to add to this list? Leave your ideas in a comment.

Please Don’t Touch

Last week I ended my therapy sessions on Friday evening, hobbled down the stairs outside my office, and looked forward to heading home and crashing…

Only to find that someone had touched and moved my rollator. It really upset me.

I was coming out of one of the worst psoriatic arthritis flares I’ve had in a long time. I was exhausted and having trouble moving. And now I had to go back up the stairs with my work bag, medical supply bag, purse, etc. (because I don’t feel comfortable leaving them unattended in my office building) to get my cleaning supplies. Because we’re in a pandemic and all of my medical conditions put me at higher risk, I need to take every precaution necessary.

After several trips up and down the stairs, my rollator was completely disinfected, and I was ready to start the long walk (for me) to my car to end my work week. But the level of upset I still felt surprised me. It was more than the use of my time and energy or possible Covid exposure. And I realized…

I felt violated.

Let me first explain why I park my rollator in the hallway of my office building. My office suite is on the 3rd floor of the building. It’s an old building and because of the layout, the elevator can only go up to the 2nd floor. And it’s quite a long stairway up to my office. I park my rollator at the bottom of the stairs, and up until now people have been really respectful and have left it alone.

Before you ask (lol) – I signed my office suite lease 13 years ago before being disabled was even on my radar. And sadly also before the accessibility needs of the disabled community was on my radar (of which I am now acutely aware – more on that in a later blog post). Ableism is a real thing, and I was very guilty too.  Thankfully, after a long hunt for another perfectly laid out space, I just signed a lease for an accessible first floor office suite in the same building! Woohoo!

Anyways… Back to feeling violated. Mobility devices are crucial for the people using them. My rollator and my arm crutch are the only ways I can get myself and all the supplies I need for work to and from my car. They are a necessity, not a luxury. And each person, if financially able, chooses their specific aids to meet their specific needs. I have an arm crutch because a simple cane was aggravating my hands, wrists, and shoulders too much. I purchased the specific rollator I have because of its comfy seat and seat backing (for my painful si joints and lumbar spine), its storage space, and its ability to carry my work bags.

Mobility devices are very expensive, especially ones that are specified for an individual’s personal needs. And because of the limits of insurance coverage, most people have to pay out of pocket for their mobility aids (more on that too probably in a later blog post).

Two summer ago (pre-Covid) my family went to Hershey Park. The accessibility program there is fantastic! But, for one of the rides I had to park my rollator and use my arm crutch to enter the ride area and wait for the next car. I watched helplessly as a small child played roughly with my rollator. I wasn’t upset with the child – they saw a “fun toy” and wanted to play with it. The upsetting part was the mother looking on and saying and doing nothing. Giving the child permission to use my expensive mobility device. Not ok. Breaking it would not only cost me a lot of my own money but would also keep me from being able to get around the park and future places with my family.

Kids are curious. One of my sweet little clients once picked up my arm crutch and started using it in his play therapy session. I think it was a light saber, and he was battling Kylo Ren. It was an innocent mistake. I didn’t shame him or discipline him. I used it as an opportunity to educate him about disability etiquette and the importance of respecting disabled people’s mobility devices.

Also, many view their mobility devices as an extension of their body. This is especially true for full-time wheelchair users. When you move a person’s wheelchair without their permission (especially when they are sitting in it), it’s equivalent to pushing an able bodied person out of your way.

For me, moving my rollator without my permission is equivalent to taking my car for a spin without my permission; playing on my iPhone without my permission; hacking into my bank accounts without permission; etc. etc. You get the picture. It’s violating.

No one wants to be violated, especially during a pandemic. So now I have a Do Not Touch sign on it in the hopes that it won’t be moved again. Please never touch another person’s mobility device without their permission.