10 things that can help you cope with your new diagnosis of Parkinson’s Disease

Many bloggers write about what you can do to cope with a new diagnosis of Parkinson’s Disease. We all have a different take on the issue, so if you have just been diagnosed, look for other blogs with similar titles. As they say in the Parkie world, we are like snowflakes, no two of us are alike. Each one of us has different symptoms and responds differently to medications and therapy. By reading several different blogs, you will get a broader perspective about your new companion, PD, which will be at your side for many years to come. So here are some of my suggestions for living well with Parkinson’s.

You have just been diagnosed. You walk out of the doctors office in a state of shock and the reality of it doesn’t sink in until after you get home. So many unanswered questions and your next appointment is 6 months or more away. What can you do?

Well, there are actually a lot of things that you can do before you see your doctor that will help you understand your new constant companion and to feel better about it. Before you do anything else, try to make a follow up appointment sooner if possible. Make sure that you bring someone with you who can help ask questions and take notes for you. Prepare a list of questions to take with you. We all forget to ask key questions if we don’t write them down. Click here for a worksheet from Health Monitor that you can use (scroll down the page to get to it).

Twitchy Woman’s 10 recommendations for the newly diagnosed:

1. Exercise. I can’t stress this enough. Exercise has been shown to be the most effective way to combat the effects of PD. If you are already exercising, good for you. See if you can increase your level of activity – the more you push yourself, the better the results. If you have not been exercising, start slowly. Walk around the block. Add distance and speed as it becomes more comfortable for you. Add different types of exercise to your routine. Varying what you do on a daily basis is good for your brain and your body. Most importantly, find what you enjoy doing. If you don’t like it, you won’t do it. My exercise routine is a combination of Boxing for PD, regular yoga classes, tennis and a Peloton bike.

2. Continue to do what you did before your diagnosis. PD may eventually slow you down, but for now, don’t let it stop you.

3. A good diet. Check Dr. Laurie Mischley’s website for recommendations for a Parkie diet.

4. Get out of the house. Loneliness is the #1 cause for a rapid decline with PD.

5. Find a mentor with PD. Ask your doctor if he/she can recommend someone living well with Parkinson’s who you can talk to. We have all been in your shoes and understand what you are going through. A mentor can answer your questions and be there for you when you need a friend.

6. Go to a support group. This may not be your thing, but try it anyway. There are a lot of different types of support groups out there and you may find new friends with PD who will become your support system.

7. Find a class for Parkies – boxing, dance, yoga, etc. The best way, in my opinion, to find your way through the maze of PD. The people you meet in these classes will become an important part of your support system. They know what you are going through. It also keeps you from being isolated (see #3) and gives you something to look forward to.

8. Go online and look for a few blogs and websites that you can trust and relate to. Beware of those trying to sell you a “cure”. Some good websites to start with are Michael J Fox Foundation, Parkinson’s Foundation and Davis Phinney Foundation. For a list of blogs I like, click on the Resources tab.

9. Read a good book about PD. Click on the My Books and Things I Like page (above) for recommendations. Two books I will recommend you start with are Parkinson’s? You’re kidding me, right? One woman’s unshakeable belief in overcoming a shaky diagnosis! by Sheryl Jedlinski andBrain Storms: The Race to Unlock the Mysteries of Parkinson’s Disease by Jon Palfreman. And order Every Victory Counts” from the Davis Phinney Foundation. It is free and a good resource.

10. Go to an educational program about PD. The 3 foundations above all sponsor educational programs, as well as The American Parkinson’s Disease Association and local Parkinson’s groups.

I hope that this will help. The most important thing for you to know is that you are not alone on your journey with PD. Don’t hesitate to reach out to me or to others with Parkinson’s Disease. We are there to help you.

“Listen to your body!”

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 twitchywoman18@gmail.com and I will send a PDF copy to you.

Parkinson’s Life, an online magazine based in London, published “World Parkinson Congress 2019: the travels of ‘Twitchy Woman” on June 20.

Photo from WPC with friends and Parky is featured in the blog post.

Farrel, Sharon, Elpidio, Naomi, Parky and Clara in front of Soaring with Hope for PD

The same photo of Twitchy Woman with friends at the WPC also showed up this week on Speakmedia’sImages 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.

!

Reaching a Milestone and an Inspiring New Book to Read

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 posWPC2019_LOGO_246x153.gifter 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.

 

Because it is World Parkinson’s Day….

There are many things I want to share with you.

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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.

Click here:  #KeyToPD  to share yours.

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.

Francesca ParkinsonsChampions Villa's photo.

 

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.

 

 

 

 

 

Saying goodbye to Man’s (Twitchy Woman’s) Best Friend

 

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.

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Lucy, 6 months old

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.

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At the beach on Thanksgiving

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
pet.
Then you cross the Rainbow Bridge together never again to be apart.