A Parkinson’s Toolbox — Early-Stage Edition

I’ve always been partial to button-fly jeans. That’s what I wore until some time in 2021, when the fingers of my right hand decided to go on strike. This was pre-diagnosis and pre-medication — all I knew was that a trip to the rest room had become a three-act play. So I bought a bunch of new jeans with zippers.

This was my first, exceedingly mild, experience with the hassles disabled people deal with every day.

I’m pretty new to this Parkinson’s thing, and my symptoms are currently in the “inconvenience” category. But even for those of us in the early stages, Señor Parky creates challenges as we go about our lives.

Here are some tools I use* to work around my limitations:

Tying my shoes is an adventure these days. Sometimes my right hand works perfectly (thanks, Levodopa!) and sometimes the fingers get slow and clumsy. So I often wear slip-on shoes from Kizik. Kizik has a patented heel gizmo that turns their shoes into hands-free slip-ons. I own two pairs of Irvines, which look decent as business casual shoes, and a pair of Wasatchs. They are comfortable and easy to put on.

Alternatives: Zeba, OrthoFeet and Skechers also market “hands-free” shoes. I haven’t tried them.

I recently bought a pair of Bread Elastic Shoelaces to use on an old pair of Converse All-Stars. They look like regular shoelaces, but the elastic means you can lace them up once at the desired tightness, leave them tied, and then pull them on and off. They are less convenient than Kiziks — you have to pull the shoes on by hand — but if you have some shoes you like, using Breads means you don’t have to tie them all the time.

Typing is also a pain with a “Parkinson’s hand.” I have used Nuance’s Dragon software to dictate part of the time — I’ve never been a great typist — for more than a decade, and now I use it all the time. There are less expensive versions of Dragon, but I bit the bullet several years ago and purchased Dragon Professional, which has some extra bells and whistles for business writing. I write faster with it, and my spelling is better. On the other hand, Dragon and I sometimes disagree on what I actually said, so proofing is crucial. And if you have multiple customers with similar names spelled differently (in 2023, I had a Michaela, a Mikayla and a MaKayla), you will beat your head on your desk.

Alternatives: Microsoft now includes speech recognition software in Windows 11. Since I already paid for Dragon years ago, I’ve never tried Microsoft’s version. If you are considering dictation software and already have Windows 11, free is a very good price. iPhones and iPads also have a decent built-in text to speech feature.

I also use a “text expansion” product called PhraseExpander. This allows me to type a small snippet which will expand automatically into something larger. For example, typing “pml” causes my laptop to fill in my email address. There are less expensive text expansion products out there, but during my sales days I liked PhraseExpander’s ability to build multi-paragraph templates for prospecting emails.

Using a mouse. As a bonus that came with my tremor, the middle finger of my right hand developed a propensity to click the mouse at random times with no warning or motivation. Depending on what laptop software I was using at the time, this generated an amusing variety of drop-down menus, and often brought my productivity to a halt. The lovely PDXKnitterati showed me how to convert my computer to a “left-mouse” orientation. Here’s how to do it. It took me about a week to teach myself how to use a mouse with my left hand, but this has made a huge difference.

Miracle Cure of the Week

Tetanus shots? Maybe!

A Small Request for Email Subscribers

If you subscribe to this blog by email, you will notice a “Comment/Like” link at the bottom of the message. Last week, one of my subscribers attempted to comment using that link, and told me it did not work for her. I tried it on a test email and could not duplicate the problem.

If you have a moment, please click on the “Comment/Like” link and try to leave a comment. If it does not work for you, I would be grateful if you hit Reply on this email and let me know.

Thanks for reading!

*Please note: while I’d be delighted to be considered an “influencer,” and receive free stuff and sponsorships (call me, Kizik!), I paid retail for everything described above. If you click on a link and buy something, I will not be compensated in any way. So go ahead…or don’t.

10 responses to “A Parkinson’s Toolbox — Early-Stage Edition”

  1. rita Avatar
    rita

    if you wanted to give your money to Uncle Phil, these are pretty nice: https://www.nike.com/t/go-flyease-easy-on-off-shoes-LGmqKx/DR5540-002

    Like

    1. shakinstreet.com Avatar

      I believe Nike uses Kizik’s technology — they have a contract with Kizik’s parent company Hands Free Labs — but I’ve never tried the Nikes.

      Like

  2. Russ Spencer Avatar
    Russ Spencer

    What happened to the “Bonus for those who read to the bottom” feature? Also, when I was having my back problems a few years ago and had difficulty getting my shoes on, I found that a long handle shoe horn was super helpful, might be worth a try with the more “difficult” shoes.

    Like

    1. shakinstreet.com Avatar

      Russ, the Bonus has been suspended due to a lack of audience reaction. Nobody said anything about the clips I posted. My blog is a fairly labor-intensive operation, and Bernstein Worldwide has decided to deploy scare resources to other assignments. The Bonus may or may not return, depending on the whim of the Management.

      The long-shoehorn idea is intriguing as a complement to the elastic shoelaces. Thanks for the suggestion.

      Like

  3. Susan Avatar
    Susan

    Great article! I’ve used my mouse left-handed for years — eases the overwork strain. You can also buy left-handed mice should you need to up the game.
    Not to get involved in your medical regimen, but Levodopo has a tendency to quit working, so folks I know on the P spectrum tend to save it as a drug of late-stage resort. But perhaps other meds have come along that are better…

    Keep on keep on!

    Like

    1. shakinstreet.com Avatar

      At the moment, Levodopa is still the gold-standard drug, even though it’s been in that position for decades. There are differing points of view on when to start taking it. My neurologist, who strikes me as pretty smart about this stuff, says that most patients have a 5-10 year window where it will be effective, and you need to decide when you want the clock to start ticking. Considerations:

      1. It has no effect on the progression of the disease — it just masks the symptoms. So the symptoms are going to get worse over time regardless of when you start. It’s not that the drug stopped working… it’s that your Parkinson’s has progressed.

      2. When the symptoms get worse, it’s often necessary to increase the dosage of Levodopa. Increasing the dose increases the chances and severity of side effects such as dyskinesia.

      My choice was to start enjoying the benefits now, and it is definitely helping. My right-hand finger dexterity is significantly better, my tremor is significantly smaller and less frequent, and the slow-movement issue I was dealing with is mostly gone.

      I am hoping my exercise regime will hold off the disease progression long enough for the scientists to come up with another drug when I need it. No guarantees.

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      1. Susan Rich Avatar

        Thank you for the explanation! I’m more than an interested bystander, so I appreciate the extra info.

        Like

  4. Teri Lloyd Avatar
    Teri Lloyd

    Hi Phil, I remember you from my days at WHSV. Just this morning I found a company called MagnaReady. They make men’s shirts with magnetic buttons for ease when dressing. Just thought I would share. Also, there are many boxing organizations out there that do special classes for those with Parkinson’s. I am not sure of the correlation but something about the boxing activity is supposed to be helpful. I have a friend with aggressive MS and she treats all of her symptoms with a special diet. No meds. It has probably been 5 years or more since she was diagnosed. Check her out. FB – MS Saved My Life. Sending my best, Teri Lloyd

    Like

    1. shakinstreet.com Avatar

      Good to hear from you, Teri! Thanks for the tip about MagnaReady. At the moment, buttoning shirts is not a problem — for whatever reason, I find shirt buttons easier to deal with than fly buttons right now. I have no doubt shirts will become an issue at some point, and I’ve put the MagnaReady site on my “resources for later” list.

      I’m actually doing boxing classes three days a week — a national organization called Rock Steady Boxing is designed for Parkinson’s patients, and the local program (Rebel Fit Club) is great.

      Thanks for reading!

      Like

  5. […] has a hobby, the hobby may become more challenging as their Parkinson’s progresses.Is there equipment available to make the hobby continue to be accessible for your PWP? It’s worth an internet […]

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Leave a reply to Russ Spencer Cancel reply

I’m Phil Bernstein

I was diagnosed with Parkinson’s Disease on May 25, 2023. At the time, I was only vaguely aware of Parkinson’s — primarily from articles in People about Michael J. Fox. And I didn’t know anyone with the disease.

Now, I know a lot more about the illness, and I’ve joined the Parkinson’s community in my hometown of Portland, Oregon.

I’ve found that writing helps me think through challenges, and this illness definitely qualifies as a challenge. I’ve started Shakin’ Street to help me think through the various obstacles, tools, and resources that a newly-diagnosed Parkinson’s patient encounters along the way.

I hope some of these posts help you address and tackle your own challenges.

Let’s connect