Walking revolutionised

My new friend Potemkin meets my old friend Shiva
My new friend Potemkin meets my furry friend Shiva

Tuesday last week, I got myself a new friend. I have namned him Potemkin and you can see him in the photo here, being examined by another good friend of mine, Shiva the cat. We had no idea what a suitable name we gave him, he really is a “god of destruction”. Just come to our place in the countryside in the summer to witness the carnage for yourself.

But I digress, this post is about my new rolling friend Potemkin.

In this post I will use the Swedish word for a mobility aid with 4 wheels intended for providing support when walking, which is “rollator”. I wrote a post in Swedish a few days ago (link to post) where I describe part of the process leading up to my getting my new friend. In that post I explain some of the aspects of Parkinson’s disease (PD) and how I now find myself in what is known as “the fluctuation phase” of the progression. It means that it is more difficult for me to get my meds to work as I expect, even when I take the same combinations of pills at the exact same time on different days. The post you’re reading now will describe some of my experiences from the first week with my new friend. 

When I had realised that I wanted to give using a rollator a try, I was able to find a store in Stockholm where you can rent those (https://www.sakta.se). I went there by public transport together with my trusted stick (see post about when I got my first stick here).  After a few laps round the store with a few different models, I left the store for the maiden voyage. The first block down Fleminggatan in Stockholm felt awkward and unsteady. It was raining and I was wondering if I should take the bus downtown instead. But only a few blocks later I felt great, I was picking up speed and my walking felt really good. People I met probably found it strange that I was wearing such a big smile on such a wet and cold day. I walked from the store on Kungsholmen via the central station and Sergels torg to Gallerian, a shopping mall in the city centre, all the while really enjoying my walking. After browsing some shops, I started towards home. On the bus on my way home, my Portuguese friend/partner-in-crime/physical therapist sent me a message. I sent her a photo of my new friend and wrote:

“I literally got it only 3 hours ago and I have been walking alone in the city since then”

I don’t think that I had fully grasped the extent to which my gait problems have impacted my life for a long time. Reflecting on the increased walking confidence I felt with the support of the rollator made me very happy. My friend commented that it must have been a tough decision. I replied:

“It was a very difficult decision to make but walking in NYC during our stay there over Christmas and New Year’s made me so tired and worried. Now I hope that I will be able to use my energy for walking instead of worrying about getting freezing-of-gait.”

I continued:

“There comes a time when you just owe it to yourself to be more kind to yourself without given up.”

I arrived safely home after a bit of trouble getting off the bus in an orderly fashion. When my husband came home and I told him about my first day with a rollator, he made a comment involving the word “battleship”. I immediately made the association with the Soviet 1925 silent movie, without really knowing much about it, and replied naming my new friend “Potemkin”. The name stuck like a barnacle and looking into the background of Potemkin, I realised that there was plenty to build on. The battleship Potemkin (the actual ship, not the film) was built for the Imperial Russian Navy’s Black Sea fleet and was made famous when the crew onboard in 1915 rebelled against the officers (see Wikipedia link here). This event is considered the first step towards the Russian revolution in 1917.

My first week with Potemkin

After a week with my new friend, I have learned and realised a number of things. The most important insight is probably that the issue of mobility aids is extremely complex. This last week I have encountered plenty of issues, including:

  • Stigma vs acceptance
    • Am I really this disabled? A rollator just feels so much more “disabled” than a stick.
    • Does this means that I will never be walking without a rollator again?
  • Practical issues, for example:
    • How do you travel safely with a rollator on public transport?
    • Are you allowed to enter a bus via the middle or back doors, same as baby strollers? If so, do you have to show your ticket?
    • What is the best way to get a rollator into a car? (No, it’s not a joke)
    • What about stairs?
    • and many more…

In the end it does however come down to one thing: Do the benefits of using a rollator outweigh the downsides?

After a week of exploring, I would have to say a big YES to that question! I have found a number of benefits, some of them expected and others more unexpected. Some of the expected ones include:

  • Gives me support when walking outside (duh…)
  • Somewhere to sit if I need to rest. 
  • A basket for grocery shopping.  

I did however not expect to already during my first hour with the rollator be able to get my walking confidence back, but I really did. It is a truly exhilarating feeling to not having to constantly worry about something happening that might trigger my freezing-of-gait.

I am not expecting my Potemkin to revolutionise my life quite as much as its namesake affected Imperial Russia but so far we have gotten off to a good start!

7 comments

  1. Sara,
    I have been using a grocery cart when I shop, because then I can stand and don’t have to worry about kicking my cane or being on uneven ground (and worrying about falling). But a rollator has brakes and a seat. I have not figured out stairs yet, though. Thanks for sharing your experiences.

    1. Thanks Fran, I have now tried stairs and since my rollator weighs only 5.6 kg, I can carry it if I need to, both up and down stairs.

  2. YES YES YES! During my cancer (with broken leg from metastasis) a rollator (or other) was not enough; my nifty scooter was essential. And YES things like getting it into a car were essential.

    And YES it’s a phenomenal difference when “can I stay upright?” is removed from the moment-to-moment consciousness. To me it’s exactly as impactful as stepping off of an icy sidewalk that was threatening to spill you. And that improvement frees the mind to get on with life. Truly re-enabling, even though people call it DISabling.

    I’m still proud of discovering the Tzora minimalist scooter … it comes apart quickly and easily (and reassembles quickly and easily) and fits in the back of the Prius easily – so easily that I gladly sold my hybrid Camry (with a boxy little boot) and got the Prius I still have today, 12 years later. I wish I’d never returned it when my rental was up.
    http://www.discovermymobility.com/store/scooters/summit-scooters/elite-portable-scooter/ob.html?gclid=EAIaIQobChMImOWZ567z3wIVjJOzCh0XXQAbEAkYASABEgJiqvD_BwE

    You exhibit extraordinary self-awareness (including awareness of your abilities and limitations) when you say this: “There comes a time when you just owe it to yourself to be more kind to yourself without given up.”

    Good for you – once again an inspiring leader. And exemplar in that you took the time to write this for posterity.

    You even made me delay my dinner 20 minutes to write this! So my wife will yell at you later. 🙂

    1. Thank you Dave for your thoughtful and kind words! Your wife can yell at me as much she wants, I will still be smiling

  3. Sara, you are extraordinary, I wish I could invent a word to encompass everything that your writing means to me.

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