Carly Simon

This week, we learned that singer/songwriter Carly Simon was diagnosed with Parkinson’s Disease. The Grammy award-winning artist made an announcement on Instagram that was not only poetically written but also addressed many of the non-motor symptoms that we all deal with on a day-to-day basis. Especially apathy. (see quote above).

The other interesting point she made is that while seeking the PD diagnosis, she was also diagnosed with Basal Cell Carcinoma (skin cancer) on her face, which required surgery. A double whammy! As a performer, she says that she was always self-conscious about her appearance. The surgery affected her appearance, and hibernating year-round became something to consider.

She is not alone

She is not alone. Having a diagnosis of PD does not mean you won’t have other health issues at the same time. I was diagnosed with PD and breast cancer in the same week. I wished I had not gotten out of bed that week. Hibernating was definitely on my mind, too.

The kindness of others

Thursday night in Vancouver, on our way back to our hotel, Mr. Twitchy noticed that one of his hearing aids was missing. We rushed back to the hotel to see if he left it there. Unbeknown to us, one of my sons-in-law went back to the restaurant. After asking permission to look for it, others in the restaurant stood up to help him find it. It was found wedged next to the base of the table where he was sitting for dinner. Hugs and high fives to all who helped in the search.

Can cruising have a positive impact on your Parkinson’s tremor?

While on our cruise, I noticed that my tremor almost completely disappeared. Was it the rocking of the ship counteracting the tremors? All I know is that this morning, 4 days after getting off the ship, it was back.

Have you had this experience? Doctors and researchers, have you seen this in your patients? Please respond in the chat.

Sunday Mornings with Twitchy Woman

Sunday, August 23 at 1:00 PM ET, 10:00 AM PT

Join me for a conversation with John Dean, MA-CCC SLP. John is a speech-language pathologist, working exclusively with people who have Parkinson’s and related disorders. Learn more about John here

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A few more cruise pics

All photos by Sharon Krischer

Have a great week!

We went on a tour of Anchorage Wednesday afternoon, stopping at important places like a chocolate factory with the biggest chocolate fountain we have ever seen.

The flower hanging baskets, which I remembered from our trip to Alaska 25 years ago were everywhere. Anchorage is known as the flower basket capitol of the world, at lease according to our guide. It must be the 20+ hours of sunlight in the summer that helps them grow so big and beautiful.

We also saw the airport where many locals have their own sea planes or bush planes. The little houses you see next to some of the planes are fully rented for the next 25 years!

Today, we embarked on a 5 hour train ride to Seward where we would board our ship, with bright sunlight for the rest of the day. It is now 10:30 PM and still an hour away from sunset.

The train ride, according to the guide on the train, is considered one of the most beautiful in America. From the comfort of our domed car, we saw glaciers and moraines (streams and lakes made from the runoff from the glaciers that are silver in color), waterfalls and even a couple of moose. Oh, and a few eagles, too.

Here are some of my photos

Sorry about any duplicates. It is difficult to edit on an iPad.

More to come

Sharon

#Silvermoon

“Is this a Parkinson’s thing?”, Mr. Twitchy would ask. "Or is it just getting older?” Good question. Declining Executive Function (the skills that you use to manage everyday tasks) is a common symptom of PD. I used to be very organized, but not so much anymore. Multi-tasking - no problem. Today, doing two things at the same time makes me shake. I have noticed that it is getting harder to do a lot of things mentally that used to be so easy for me, like figuring out a tip in a restaurant. And of course there is always the most important question - where did I put my glasses, which are on top of my head the whole time I am running around the house looking for them.

I have left my phone at home….

I have thought about creating a checklist to post at the door, and maybe in my car, with the following:

• Do I have my car keys? House keys?

• Meds?

• Phone? Wallet?

• Are all of the doors closed and locked?

• Is there anything else that I need for this trip out of the house?

I have left my phone at home, realizing it when I already on my way to my destination. Do I really need to go back and get it? If I don’t, I enjoy the break from technology until I get home. However, my drivers license is in my phone case along with a few credit cards. There is a copy of my license on my phone that I can always use…… oops, that doesn’t do me any good if I don’t have my phone with me. Ugh, maybe I do need to go back home and get it.

Do you have a better solution for this? If you do, please tell me what works for you. I know it is not a major problem - just an annoying one. And it drives Mr. Twitchy crazy.

First time attendees talk about their experience at the WPC

On Sunday, several of the Twitchy Women who attended the World Parkinson Congress in May talked about their experience at the Congress.

Have a great week!

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Last week I forwarded some information about the ACPRCS Unfortunately, I hit send before I was finished and may have given you some of the wrong information. After looking at everything again, I thought I should share my insights on the meetings.

The Advisory Council on Parkinson’s Research, Care, and Services (ACPRCS) met last week for the first time. The Council is a federal advisory committee created by the National Plan to End Parkinson's Act. This act, led by former US Representatives Gus Bilrakis and Jennifer Wexton, who has Progressive supranuclear palsy (PSP), which was signed into law almost exactly 2 years ago, calls for an integrated national plan to prevent, diagnose, treat, and cure Parkinson’s, ameliorate symptoms, and slow or stop progression. Those are lofty goals.

The 23-member body was set up to advise the U.S. Department of Health and Human Services (HHS) to accelerate research, improve clinical care, enhance support for caregivers, and build the first-ever National Plan to End Parkinson's. [1, 2, 3] The formation of the Council was announced last year and as usual in Government, it took a long time to announce the members of the council and set up the first meeting.

I know that many of you feel that the ACPRCS will just be another instance of bureaucratic posturing. Nothing will come of this and it is a waste of time and money. That is the wrong way to look at this.

‘Nothing about us without us’

Let’s go back to the 1980’s when the AIDS pandemic was raging. Activists took it upon themselves to demand and secure a meaningful role for people living with aids in all areas of the research process. They became self-trained experts and lobbyists, literally forcing the pharma industry, US government(HHS), funding and regulatory agencies to fast-track their response to the epidemic. Nothing about us without us became their mantra. Unfortunately it took many years to accomplish their goals, but they have paved the way for us and other disease advocacy groups to work effectively with the government to actually get something done.

Can we eliminate Parkinson’s?

I don’t think so. It is going to take years to remove the toxic chemicals from the environment. Our numbers may go down significantly but I doubt that PD will be eliminated completely. We also need to acknowledge that the number of people with genetic PD is also increasing as new gene mutations are discovered. The good news for that group is that some inroads are being made for effective gene therapy.

What is the benefit of all this for those with PD?

1. For the first time, those of us in the Parkinson’s community have a voice on a National level. I know, I know, the Fox Foundation goes to Washington to lobby Congress. That’s great and there is even a Parkinson’s Coalition in Congress that your Senators and Representatives can sign on to. But as much as we think they will be educated about PD and rush to pass bills to help us, it’s just not going to happen. The difference here is that the ACPRCS includes people living with Parkinson’s, caregivers, health care providers, researchers, advocacy organizations, and representatives from federal agencies. They know PD and some of the people involved may actually be in positions to make some changes at the Federal level.

2. A portion of each meeting is reserved for public comment. We are invited to speak up to voice our thoughts and concerns. Prior to each meeting of the ACPRCS full committee, NIH/HHS issues a Federal Register notice and an announcement on the ACPRCS website inviting members of the community to provide public comment for the Council’s consideration at the meeting. Go to the website for more information on how you can participate.

3. Visibility: There are many issues facing our community. With increased visibility within government agencies, I would hope that there will be increased awareness of the cost of Parkinson’s which is estimated to be $82.2 billion annually in the United States. Direct medical expenses average $18,859 per patient each year, while indirect costs—such as unpaid caregiving, lost wages, and home modifications—push the total economic toll to over $40,000 per patient annually. [1, 2]

4. Many people with PD are on fixed incomes and access to doctors, medications, therapy and other services can be difficult. We hear too many stories about some who need to choose between getting their medications and food. Once again, increased visibility in Federal agencies could lead to better benefits and better care, not just for People with Parkinson’s, but for others with chronic diseases who face the same issues.

The ACPRCS is required to hold 4 meetings a year. The next 3 meetings are August 24(virtual), November 9 (in-person and virtual) and December 7 (virtual). If you can, attend the meeting virtually and ask questions. All are recorded if you cannot join them live.

Nothing about us without us

I can’t emphasize this enough. We must continue to fight hard to be included in the research and decisions being made by our government. After all, we are the ones living with PD, and we must share our experience and knowledge to get the care that we need. For more information on how you can get involved, go to the Fox Foundation or Parkinson’s Foundation websites.

Sunday Mornings with Twitchy Woman

Sunday, July 12 at 1:00 PM ET, 10:00 AM PT

Several of our amazing Twitchy Women who attended the World Parkinson Congress for the first time last month will be joining me to talk about their experiences. What did they learn? What were some of the key takeaways from the Congress? Join us for a lively conversation about the WPC and what to look forward to in 2029 at the next WPC in Quebec City

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Primary prevention means reducing the chances of Parkinson's disease developing in the first place…. Dr. Michael Okun

On Tuesday, the National Advisory Council on Parkinson’s Research, Care, and Services met for the first time. Fortunately, the meeting was available for anyone to watch on-line and has been recorded in case you missed it. Unfortunately I could only watch the last few minutes but will go back and watch it when I can. If you want to watch it click here. Three more meetings are planned for this year on August 24(virtual), November 9 (in-person and virtual) and December 7 (virtual). I will give you the link before each meeting so that you can watch.

Dr. Michael Okun has summarized what was discussed at the meeting. Click on his name to read the entire post.

Sunday Morning with Jim O’Connell

This past Sunday, author Jim O’Connell and his wife, Connie, joined me for my Sunday Mornings webinar. Jim was diagnosed with PD nearly 20 years ago. Jim and Connie read a few chapters from his book Incurable Gifts and we talked about his journey with Parkinson’s. His warm sense of humor is evident in every chapter of the book. I think you will enjoy reading it.

The book is available on Amazon.*

Next on Sunday Mornings with Twitchy Woman

Sunday, July 12 at 1:00 PM ET, 10:00 AM PT

Several of our amazing Twitchy Women who attended the World Parkinson Congress for the first time last month will be joining me to talk about their experiences. What did they learn? What were some of the key takeaways from the Congress? Join us for a lively conversation about the WPC and what to look forward to in 2029 at the next WPC in Quebec City.

Have a great week!

*As an Amazon Associate, Twitchy Woman earns from qualifying purchases.

Occasionally, a medical device company will reach out looking for people willing to give more time and energy by trying out a new tracking device or some other equipment for an extended period of time. Drug companies are often looking for people to participate in Phase 3 drug trials. If you do not know what Phase 3 trials are, the University of Cincinnati College of Medicine has a good overview of the drug trial process. You can read it here.

Pilot study for improving Insomnia symptoms

Researchers at Virginia Commonwealth University are currently recruiting participants for a new pilot study aimed at improving insomnia symptoms in individuals with Parkinson’s Disease (PD).

Invitation to participate in a research survey.

For People with Parkinson’s and Partners

Parkinson’s Across America

Two years ago, Scott Rider and Jim Morgan came to my home in Beverly Hills for their last stop on the road for Parkinson’s Across America. The final segment of their 5-part documentary airs tonite!

Sunday Mornings with Twitchy Woman

Sunday, June 28 at 1:00 PM ET, 10:00 AM PT

A Conversation with Jim O’Connell, author of Incurable Gifts

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Sunday, July 12, 2026 at 1:00 PM ET. 10 AM PT

World Parkinson Congress Re-cap

Three of our first time attendees will talk about their experiences at the WPC and why you should consider going to the next WPC in Quebec City in 2029

Register here

Have a great week!

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I was feeling so good from boxing that I did not even think about my meds. By the time I remembered, it was already 12:30. I took my pills with lunch and rushed out to my class, a short drive from my home.

I never got there. It felt like a switch was flipped. I was fine and then I wasn’t. I turned around and went back home. I sat down on the sofa for a minute and woke up an hour later. Groggy from an afternoon nap that was not refreshing at all. That overwhelming fatigue that comes out of nowhere is very common with Parkinson’s. Especially when you have been as busy for the last month as Mr. Twitchy and I have been. Traveling to Phoenix for the World Parkinson Congress. Volunteering 4 days at the US Women’s Golf Open in Los Angeles, followed by a trip to Chicago for our granddaughter’s Bat Mitzvah. The younger me would have been energized by all of this activity. The older, PD version of me doesn’t fare as well.

My doctors have a very bad habit of reminding me that I have Parkinsons and I am not 40 (or even 60) anymore. So of course I should not expect my energy level to be the same as it was. I don’t believe them.

I may just go take another nap.

How do you manage with Parkinson’s fatigue? We want to know! Please write your tips in the Comments.

Up next on Sunday Mornings with Twitchy Woman

Author Jim O’Connell will join me on Sunday, June 28 at 10 AM PT, 1 PM ET to talk about his new book Incurable Gifts: My Weepy, Wobbly, Wonderful Life With Parkinson’s. O’Connell was an editor at Bloomberg News when he was diagnosed with PD 20 years ago. Be prepared to go on a roller-coaster ride with Jim who can go from laugh-out-loud funny to devastating at the same time.

Register here

Today, I am trying out Substack for my blog. I hope to have everything up and running from my website in a few weeks, so please bear with me if you can’t find something you are looking for. Send me an email with any questions you might have.

Have a great week!

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