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

On July 11, 2019July 14, 2019 By skrischerIn Education & Advocacy, Exercise, Inspiration, Living Well, Parkinsons Disease3 Comments

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 and “Brain 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!”

On July 5, 2019 By skrischerIn Inspiration, Living Well, Parkinsons Disease, World Parkinson Congress 2019Leave a comment

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’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.

More thoughts on the WPC: Diet and Nutrition

On June 8, 2019June 21, 2019 By skrischerIn Living Well, Parkinsons Disease, World Parkinson Congress 20192 Comments

One of the best sessions I attended was Microbiome and the Diet in PD. There were many sessions this year that focused on Microbiomes and the theory that alpha-synuclein actually starts its devastating journey in the gut and eventually travels upward to the brain in PD.

The first speaker, Dr. Viviane Labrie, of the Van Andel Institute, addressed this issue. She says that constipation or GI tract problems can occur up to 20 years before motor symptoms. Alpha synuclein aggregates may be stored in the Appendix, and you can actually see it go up the GI tract to the Vagal nerve and into the brain. Studies show that everyone has this aggregate in the Appendix, but there is 3 times more in people with PD.

The second speaker, Dr. Pascal Derkinderen stated that Parkinsons is a GI disorder, with many slides to prove his point.

But the highlight of the program for me was Laurie K Mischley, ND, MPD, Phd, from Bastyr University. She says that nutritional needs are different for each person. According to Dr. Mischley, diet is what you put in your body, including toxicants. Unfortunately, in addition to other issues, malnutrition is a huge problem in PD, with a much higher incidence than in the general population

Dr. Mischley’s goal in her ongoing study is to look for things in your diet that influence your progression on the PRO-PD score. The average person starts at about 580 and progresses about 50 points per year. This usually correlates with patient perceived quality of life. You can find out your PRO-PD score here.

What can you do to improve your outlook with PD? She cited one simple example to illustrate her point: she found that PwPs eating 4 cups of vegetables a day do better than those eating just 2 cups.

If you are 20 years into your disease, you can still change the rate of progression if you change your diet. The earlier you start the more impact a change in diet will have. She says that organic food does significantly decrease the pro-Pd score. Look at the next slide to see which foods will have a negative impact on your progression of PD.

Finally, Dr. Mischley says that social health is a nutrient. Someone who gets out and socializes usually does better. Isolation is a major problem. Studies have shown that loneliness is single biggest cause of Pd progression. People with friends do much better on the Pro-PD scale. Those who are lonely, fail to thrive.

See my photos of the slides below for more information. Or go to Dr. Mischley’s website to learn about her research.

More tomorrow…..

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Continue reading “More thoughts on the WPC: Diet and Nutrition” →

Keeping your Parkinson’s under control when your life isn’t

On May 18, 2019June 21, 2019 By skrischerIn Living Well, Parkinsons Disease, World Parkinson Congress 20193 Comments

If you want to go fast, go alone.
If you want to go far, go together.
African Proverb

It seems that once you think everything is under control, something happens to set you back. You are feeling so good about how you are doing, that you forget that you have limits and take on too much to do. (I admit that I am way too guilty of this). Parkinson’s lies in wait until you make that misstep and will suddenly torment you and increase the severity of your symptoms, or bring you a new set of symptoms to deal with.

On the other hand, maybe life is out of control. You have been doing too much and not taking care of yourself. You moved, your child got married, you suffered a loss. You may have felt organized at first, but at some point you realized you are in over your head. You just can’t do everything the way you used to without feeling it afterwards.

You find it hard to make plans because you just don’t know how you are going to feel any given day. One day you feel great, the next night you don’t sleep and fatigue keeps you down the next day.

Finally, You miss exercise for a couple of weeks because you are sick, on vacation or you just don’t have the time. At some point you realize that your tremor has been getting slightly worse every day, or you have become much stiffer. You feel as if you are on a downward spiral. Your meds are not working as well as they should, but you really don’t want to increase the dose. You just don’t feel good, and it is difficult to explain exactly what is troubling you.

What do you do to get out of a downward spiral?

1. Learn to say “no”. Get help where you need it. At home and/or at work. Don’t take on a new project that you know will be overwhelming. It’s ok to slow down a little. I know its hard – I am guilty of overdoing it, pretty much all the time. But remember, you are living with a chronic disease that won’t go away because you are too busy to acknowledge its presence.

2. Take a deep breath – practice breathing exercises, meditation. Parkies tend to be shallow breathers. Get some more oxygen to your brain and clear up the fuzziness between your ears.

3. Get back into your exercise routine. But don’t expect miracles immediately. It took time to get to where you are, so it is going to take some more time to get back in shape and feel the benefits of exercise on your brain again.

4. Get adequate sleep. 4 hours a night is not enough. 7-8 is ideal. However, the last time I think Mr. Twitchy and I ever slept that long was probably in college. We have forgotten how to sleep at night. I have tried sleepy time tea, meditation, yoga for sleep, no iPads, playing games on iPads in the middle of the night hoping to fall asleep, weighted blankets (which do help to some extent) various forms of CBD, etc. etc. It’s ok to take a sleeping pill for a few nights to break the pattern, or at least get a decent amount of sleep for a couple of nights so that you are not a zombie all of the time. Check with your doctor about sleep medications that may be right for you.

5. Get support from your family, friends and PD friends. Let them know how you are feeling and that you need some extra help for a little while. Don’t be a martyr.

6. Check your diet. Are you eating too much protein too close to taking your meds? Has the sugar monster has taken over your diet? If you are not sure what you should be eating, a Mediterranean diet is always a good place to start. Or check with a nutritionist. Dr. Laurie Mischley has done a lot of research on Parkinson’s and diet. Go to her website for more information

And if none of these things help, know that you are not alone. There are always Parkies on-line somewhere who are not sleeping either and are happy to chat in the middle of the night and commiserate with you.

I finally met Parky friends who I had met online, and it reinforced the fact that our common bond of Parkinson’s brings us together – and that we provide unconditional support for each other.

Twitchy Woman was featured today on Parkinson’s Life, a website for Parkies in Europe and beyond. Check out my WPC Diary here.

Reaching a Milestone and an Inspiring New Book to Read

On May 3, 2019May 3, 2019 By skrischerIn Book Reviews, Education & Advocacy, Exercise, Inspiration, Living Well, Parkinsons Disease, World Parkinson Congress 20193 Comments

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.