An invaluable resource for People with Parkinson’s Disease

One of the best resources that I have found for people with Parkinson’s is the Stanford Parkinson’s Community Outreach Program. Their “goal is to improve the quality of life for the person with PD, the caregiver, and the community.”  If you are looking for one reliable resource, this is the one you should subscribe to. You do not need to be affiliated with Stanford or live in Northern California to join.

In addition to the usual community programs, they provide seminar notes of most webinars for PwP’s from many different organizations, including Twitchy Woman’s Sunday Morning programs. This often includes an easy to read summary and the video recording of the webinar.

Here is an excerpt from an email I received today about a webinar on Assistive Devices:

“On June 15 Parkinson Society Southwestern Ontario (PSSO) hosted a webinar on Assistive Devices for Daily Living.  Two masters students in the occupational therapy program at Western University were the speakers.  They began by explaining that the purpose of assistive devices and occupational therapy are to help people with limited or alternative abilities continue to do the task they need or want to do, whether that be self-care, employment/volunteering, or recreation.

Before sharing tips and demonstrating several assistive devices to aid in dressing, meal preparation, and eating, they made the point that you cannot force someone to accept alternative ways to accomplish tasks.  Instead, you must meet them where they are.  While answering questions at the end of this webinar, the speakers suggested how to approach someone who may benefit from assistive devices.”

The author then provides a very clear outline of the program which is easy to understand, with many different types of assistive devices such as this reacher grabber* tool.

You can access Webinar notes on the website here. The notes from this webinar are not yet on the website, but should be there in the next day or two.

You can’t possibly make this stuff up

Now that everyone is traveling again, be prepared for all kinds of obstacles, especially at airports. Our flight home from Chicago earlier this week was a prime example of how things have gotten out of control at the airports. You have to have a sense of humor to travel these days.

While on our way to the airport, we received multiple notices that our plane was going to be late. By the time we got to the airport, our flight was delayed almost 2 hours. With nowhere to go, we found seats by our gate and waited. And waited. We finally boarded the plane for our 3:20 flight at about 4:45. The plane taxied out to the runway and sat. After a while the pilot announced that we had to go back to the gate because the gate agent’s number of passengers on the flight was wrong. Couldn’t they just count how many were on the plane and reconcile it? Then we had to wait to refuel. We were starting to feel like we were in the movie “Airplane!” Our flight finally left at about 6:30. (4:30 LA time). We had already been on board for almost 2 hours.

We landed in Los Angeles at around 8:30. Tired and hungry (no food on the flight except cookies and pretzels), everyone was anxious to get off the plane. But the door didn’t open. After a few minutes the pilot announced that the ground crew had directed the plane to park at the wrong line, 5 feet too close to the gate. The pilot asked everyone to take a seat so they could push the plane back 5 feet. Easy? Of course not. There were a number of people who tried to put their bags back in the overhead storage instead of just sitting down, and others making their way to the back of the plane where they were originally seated. Meanwhile, the other passengers started yelling at them to sit down. It took a while to get everyone seated. Then it only took about 30 seconds to push the plane back and open the door. We finally got off the plane after 9:00 pm, grateful to be back home.

Have a great week!



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A Note To My Readers

I love to see your comments and get your emails as we share our collective experiences. But based on a couple of private questions from some of you, remember, I am just a lay person and a patient like the rest of you. For medical and similar advice, you need to talk to your own doctor

Twitchy Woman

Twitchy Women partners with the Parkinson’s Wellness Fund to ensure we have the resources to offer peer support for women with Parkinson’s.