DIY: Living Better with Parkinson's

Managing and living with Parkinson’s disease (PD) is a challenge. Every member of the Parkinson’s Foundation People with Parkinson's Advisory Council (PPAC) knows this first-hand and set out to help the PD community by launching a series of articles where people can share the ways they modify and use every-day items to help manage PD symptoms.

Do It Yourself (DIY): Living Better with Parkinson’s will regularly highlight the creative, PD-tailored, DIY ways people with Parkinson’s and care partners make daily tasks easier.

The views and opinions expressed in this blog, along with listed products, are those of the authors and are not endorsed or reflect the official policy or position of the Parkinson’s Foundation.

Below we list the tools people have created themselves or purchased to live better with PD:

If it is difficult to hold a pen or pencil, go to a home improvement store and buy foam pipe wrap (used to insulate pipes). The tube splits open and the pencil fits inside.

- Mary, PPAC member

If you need help falling asleep, try listening to a boring book or meditation app, like Calm. It offers daily sleep stories ― the best so far is “Once upon a GDPR,” where Peter Jefferson reads a law document for 34 minutes.

- Gretchen, PPAC member

My Fitbit is very helpful in monitoring my activity level and in reminding me to take my meds. I sometimes feel like I’ve walked for miles, but the Fitbit tells me I’ve barely moved all day. It is a good reality check.

- Andree, PPAC member

Getting into the right position to sit down safely on the toilet requires walking, turning, backing up and sitting down. We use blue tape to delineate the exact space my dad needs to stand in to sit down safely.

- Dana, PPAC member

Use voice to text apps (I use Dragon) to help with writing on the computer.

- Andree, PPAC member

Use the alarm on your cell phone to set your daily medication alarms.

- Richard

I use a jogging baby stroller with big wheels when I’m walking on the gravel roads by our home. I weighted it with a gym bag and it has really helped my walking. I can walk two miles using this stroller and I’m not so exhausted afterwards.

-Karen and Rob, PPAC member

For toe dystonia you can find toe separators in all shapes and materials. They help straighten and relax my toes. These separators aren’t made specifically for people with Parkinson’s, but are very helpful. In a pinch, I twist up a handkerchief and wind it between my toes.

- Gretchen, PPAC member

The U-Step 2 walker with a laser light that comes on with switch helps with freezing. It is pricey, but with Medicare it cost $70. It also has a metronome to help give rhythm for help with walking. It doesn’t handle steps or gravel well but has a seat with storage.

- Rob

For constipation, try the Squatty Potty. It really works! It elevates the feet when on the toilet, which straightens out the colon and makes it much easier to go. You can also multi-task at the same time and polish your toenails.

- Smitty

I found a cup with a storage area for pills inside. It is a handy way to take my medication on-the-go.

- Trudy

Get a handicapped placard for your car. I used to think I didn’t really need it. But I have found the less energy I have to expend at the beginning of running an errand the more I have in reserve at the end.

- Andree, PPAC member

Place a 1/2 foam roller flat on the bed. Lying on it releases the spine and makes it more flexible. It’s also good for colon therapy.

- Jean

My worst time of day is morning. I put blue masking tape on the floor to help me with my walking, especially those first steps in the morning.

- Eduardo

I use hot packs on my eyes in dry climates, which have really helped my dry eyes.

- Sandy

It was very hard to get my walking shoes on until I discovered sneakers that zipper in the back. They are much easier to get on and off, although the zipper can be tricky. I use Flyease by Nike.

- Orlando

To keep his muscles strong, my husband uses the eTrainer-ER Mini. It exercises your arms and legs and can be used from a chair.

- Susan

For more information and tips for daily living visit Parkinson.org/Blog or call our Helpline at 1-800-4PD-INFO (1-800-473-4636).