We are finally getting caught up from our trip to Japan. Since returning home, Twitchy Woman has gotten a lot of press. This is very exciting!!!
Just out in Doctor’s offices is a magazine published by Health Monitor. The “Guide to Living With Parkinson’s Disease” is distributed free to doctors offices in the US. The article: “We’re doing what we love!” features me along with two other women with Parkinson’s.
Unfortunately this guide is not available on-line, only in print. If you would like to see a copy of the entire magazine, please email me at firstname.lastname@example.org and I will send a PDF copy to you.
Photo from WPC with friends and Parky is featured in the blog post.
The same photo of Twitchy Woman with friends at the WPC also showed up this week on Speakmedia’s “Images of the Month” for June. Speakmedia is the parent company of Parkinson’s Life.
I want to thank all of you for being loyal readers. None of this would have happened with out you. Your support, comments, emails, etc., have encouraged me to continue writing Twitchy Woman over the last 4 years. Let’s keep the dialogue going.
Look at you. You’re in Spain. You’re walking out here on the Meseta. How many people are doing this? How many people with a chronic disease do you see out here today?……Do something good, Carol. Find something good to do with it.” From The Ribbon of Road Ahead
Twitchy Woman has reached a milestone. This is post #201 ! ! ! When I started this blog, I never expected it to continue for as long as it has. And what a ride it has been. Somehow, I have posted almost weekly in the last 4 years, and am honored to have made Best Parkinson’s Blogs lists at least 6 times (see the sidebar). Other opportunities for me have come up as a result. I want to thank everyone of you who has been following me, whether it has been for 200 posts or just 1. My initial blogpost was seen by just 15 people. There are now over 1500 followers. Your support and encouragement have kept me going.
On my way to Kyoto!
Speaking of opportunities, as you may know, I submitted an abstract to the World Parkinson’s Congress. At medical meetings, researchers are asked to submit abstracts (a brief description of their research study). If their abstract is accepted, they will then create a poster based on their research for display. For the WPC, People with Parkinson’s (PwP’s) were also encouraged to submit their ideas (abstracts) for living well with PD. There will be hundreds of posters on display throughout the conference. If you are attending the WPC, look for me on Wednesday, June 5, between 11:30-1:30. I will be at my poster in space 649 to talk about it and I would love to meet you.
Thank you to all who responded to my survey for this project. I cannot give you the final results until after the WPC, but the most important things for someone to live well with PD are Exercise and Getting Enough Sleep. Neither of these should be a surprise for anyone with PD. If we don’t have a good night’s sleep, the daytime fatigue can be debilitating. And that fatigue manifests itself in many ways.
As far as Exercise is concerned, the more you do, and the more intense it is, the better. I had hand surgery last Thursday and have not been able to exercise since. I am already noticing, 5 days later, that my tremor is acting up more. We need to think of Exercise as medicine, and I have not been taking my medicine.
The Ribbon of Road Ahead
And speaking of exercise, I just finished reading an inspiring new book by fellow PwP, Carol Clupny titled The Ribbon of Road Ahead. After her diagnosis of Parkinson’s, Carol was determined to walk The Camino de Santiago. If you have traveled in northwestern Spain, from Pamplona to Santiago de Compestola, you may have seen hikers walking along the route marked with seashells pointing the way. Pilgrims from all over the world come to walk on this grueling 500+ mile network of pilgrim routes, from Southern France to Spain, for many different reasons, often hiking through rocky mountain passes. The Way, as it is called in the movie with Emilio Estevez and Martin Sheen, is difficult for anyone without disabilities, but Carol was not going to let that stop her. With her husband, son and other family members and friends at her side, she recounts the obstacles she faced as well as the accomplishments.
Carol went back 2 more times to walk parts of the trail with other women whom she had met along the way. She has also biked across Iowa 3 times with her husband on the annual 450 mile RAGBRAI (The Register’s Annual Great Bicycle Ride Across Iowa) with the Pedaling for Parkinson’s team. Much of the ride was done on a tandem bike named Grepedo. She did all of this before her DBS surgery a couple of years ago. The final chapters recount her surgery and the small successes that were the beginning of regaining her life before PD. Her story is inspiring, and shows that determination and grit can help those of us with a chronic illness get through some of the more difficult times. Carol has indeed done something good by sharing her story with us. Look for Carol at the WPC in Kyoto if you are there.
Yesterday, the first #ParkinsonsEve took place in Great Britain. I wish I could have attended, but going to Kyoto is a priority this year. However, those of us who stayed home will have an opportunity to watch at least some of the conference in the next few days. Stay tuned for the info on where you can watch it online. For more info go to parkinsonseve on Facebook.
Update 4/15 Click on the video to see all of the conference speakers:
This month, the Parkinson’s Foundation wants to know your 🔑 to living well with PD.
Whether you are living with PD, are a caregiver or a healthcare professional, tell us your tip. From managing freezing to sleeping and bathroom tips — no topic is off limits. Our hope is that others can replicate your tips and make their life just a little easier.
My #KeyToPD: Finding new friends with PD who understand how you feel.
12 Things You Don’t Understand About Parkinson’s Unless You Have It
Are you familiar with the website The Mighty? I was not until contacted earlier this week by them to contribute a few quotes for 12 Things You Don’t Understand About Parkinson’s Unless You Have It, which was published today. The Mighty, according to their website, is a digital health community created to empower and connect people facing health challenges and disabilities. There is a Parkinson’s community on the website that you can subscribe to, and you can also share your stories, ask questions and connect with other Parkies.
And finally, there were problems with the survey that I sent out a few weeks ago asking how YOU are living well with Parkinson’s Disease. I want to thank the 139 people who completed the survey, but unfortunately, I will not be able to use the data.
I am going back to the questions as originally posted on Facebook.
Please list the top 3 things that help YOU to live well with Parkinson’s. Then the flip side – the top 3 things that are obstacles for you: For example: Positive: Exercise, Advocating for myself with my doctors, Friendships with other women with PD. Negative: Poor sleep, Tremor gets in the way of doing things, Daytime fatigue
Click here to take the survey. Any answers sent by email will not be included in the final report. Please respond by April 22. Thank you in advance for helping out.
We said goodbye to our dog Lucy this morning. This is the fourth dog that we have lost, and it never gets any easier to say goodbye. As a friend said to me, dog’s are God’s joke on men. They are man’s best friend, but their lives are way too short.
From the start, she was my dog. Lucy was a rescue that we adopted 14 years ago as a puppy. Apparently she had been abused by a man before we found her, because of her reaction to my husband and other men. She just did not like men, especially tall men. She was afraid of them, barked at them, occasionally snapped at them, especially my son-in-law when he visited from Chicago. There would be a point in every visit, where he would be standing still and she would go for his ankles, just to let him know she did not approve. Lucy quickly got the nickname of Lucifer.
Rescue dogs can be complicated. You don’t know how they were treated before they came to you, which can make the transition difficult. Some are so grateful that they are in a warm, loving family, that they can’t do enough for you. Others, like Lucy, have fears from being treated poorly or even abused. It takes them a long time to acclimate. Lucy bonded to me immediately, but had a complicated relationship with Mr. Twitchy. She wasn’t so sure she could trust him, so their relationship was rocky from the start. So much so, that Lucy had her 5 minutes of fame on a friend’s national radio talk show, where he talked about Lucy not liking Mr. Twitchy, but loved me. Not once, but TWICE, she was the topic of conversation on his show.
Lucy was always meant to be my dog.
My kids decided that I needed a dog because I was home alone so much. Mr. Twitchy was commuting between LA and Chicago for work, our kids were all living out of town at that time, and our golden retriever, Rusty, had died a couple of years earlier. I had also begun having health issues at that time. My oldest daughter started searching on Pet Finders and sent me photos, lots of photos. She sent this one and it was love at first sight, for me anyway. That pink nose was the clincher.
Through the years, she was a source of comfort for me as my health issues continued. She would curl up beside me on the sofa when I was not feeling well. And she forced me to get up and take her for walks on the days when I didn’t want to get out of bed. For anyone with Parkinson’s or any other chronic disease, walking a dog regularly is good exercise, even if they go slowly and stop at every bush or tree. It won’t count as cardio exercise, but it benefits you in other ways. Most of all walking your dog combats isolation and gets you moving. After all, dogs are magnets for other dogs, so the walk becomes a social outing, for your dog, and for you since you can’t ignore the other people walking their dogs.
I loved walking Lucy in the early mornings. For years, she had me up at 5-5:30 am to go out. It was so quiet and peaceful at that time of day. In the winter, we would watch the the last stars fade and the sun rise, sometimes getting spectacular photos of clouds bursting with color just before dawn. In the summer, everything was quiet, except for the chirping birds. It was our time alone with each other before everyone else woke up and the phones started ringing. We both loved having that time of day together.
We will miss Lucy, but will have the memories. And as my almost 4 year old grandson said, Lucy will go to the happy place on the Rainbow Bridge* and wait for us along with Penny, Rusty and Layla, to join her later. 🐾🐾
*The Rainbow Bridge (Author Unknown)
There is a bridge connecting Heaven and Earth.
It is called the Rainbow Bridge because of all its beautiful colors.
Just this side of the Rainbow Bridge there is a land of meadows,
hills and valleys with lush green grass.
When a beloved pet dies, the pet goes to this place.
There is always food and water and warm spring weather.
The old and frail animals are young again.
Those who were sick, hurt or in pain are made whole again.
There is only one thing missing,
they are not with their special person who loved them so much on earth.
So each day they run and play until the day comes
when one suddenly stops playing and looks up!
The nose twitches! The ears are up!
The eyes are staring and this one runs from the group!
You have been seen and when you and your special friend meet,
you take him in your arms and hug him.
He licks and kisses your face again and again –
and you look once more into the eyes of your best friend and trusting
Then you cross the Rainbow Bridge together never again to be apart.
Wow, another week and we start a new year! So much has happened in the last year on the personal front and in the Parkinson’s world.
It has been a good year for Mr. Twitchy and me. We welcomed our fourth grandchild in April. My Parkinson’s has remained fairly stable since being diagnosed about 10 years ago, for which I am eternally grateful. So other than the usual aches and pains of growing older or as a result of stupidity on my part for thinking that I can still do things I did at 20, (we don’t want to talk about that), life is pretty good. Mr. Twitchy had back surgery in July and is looking at replacing knees or hips or some other joint sometime in the not too distant future. None of this stopped us from going on adventures to Israel and Iceland this year, although it may have slowed us down a little.
In the Parkinson’s world, we are busy planning our trip to Japan and the World Parkinson Congress in June. I am looking forward to hearing about the latest research on PD. There are so many new theories that are being investigated about the causes of PD, where it starts in the body and why, as well as new breakthrough treatments that are in the final stages of clinical trials. Some of this research is going on in Kyoto right now, so my hope is that we will hear the latest from those doctors and scientists doing the research when we are there.
One project I have been involved in is the Parkinson’s Foundation’s national effort to address long-standing gender disparities in Parkinson’s research and care through the “Women and PD Teams to Advance Learning and Knowledge,” or “Women and PD TALK” project. I have been honored to be the co-chair this project. We held 10 forums around the country in the last 12 months, bringing together women with PD and caretakers, doctors, therapists and other related professionals. A final national forum in Houston last October brought together the chairs of the local forums along with national leaders with the goal to create an action plan for the treatment and care of Women with Parkinson’s, which will be published in the next few months, in time for the WPC.
Trying something new for sleep:
My daughter suggested that I try a weighted blanket for sleep. I am trying out the Brookstone Nap Weighted Blanket and will write about my experience with it in the next few weeks. There are a lot of choices and things to consider when buying a weighted blanket so I want to get some more information before I write about them.
Some good news just off the press:
Acorda Therapeutics, Inc. today announced that the U.S.
Food and Drug Administration approved INBRIJA™ for intermittent
treatment of OFF episodes in people with Parkinson’s disease treated
with carbidopa/levodopa. OFF episodes, also known as OFF periods, are
defined as the return of Parkinson’s symptoms that result from low
levels of dopamine between doses of oral carbidopa/levodopa, the
standard oral baseline Parkinson’s treatment.
Finally, I have been approached by several different bloggers this past year for interviews . The latest was published this week by Kai Rosenthal on her blog a simple island life. Kai lives in Honolulu, and blogs about PD, lifestyle, food, fashion and other things she loves. It is an interesting mix of ideas that she puts together beautifully in her blog. I hope you enjoy it.
You can find links to other interviews and more by clicking on Press at the top of this page.
Looking ahead to 2019, I wish all of you a very wonderful, healthy new year, with lots of good news in the PD world. Merry Christmas and Happy New Year!