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.

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The Crazy Hat Lady is Back!

It’s summer time. Here in Southern California, the June gloom is giving way to the glorious sunshine that California is known for. And all that sunshine brings us both the good and the bad.  It is also time for the return of the Crazy Hat Lady!  My big hats have been dusted off and ready to be worn.

The good: Vitamin D. Soak up some rays to get your vitamin D naturally. Now that winter is over, get outside and enjoy it.

The bad: lots of skin problems, specifically skin cancers caused by the sun. For people with Parkinson’s, our risk of melanoma is higher than that of the general population. It doesn’t matter if you are fair with lots of freckles, or dark skinned. You need to be vigilant and make sure that you see a dermatologist at least once a year, more often if something just doesn’t look right.

To combat the harmful UV rays, you need to use sunscreen, lots of sunscreen. And take a hint from all of those Japanese women we saw with umbrellas in Kyoto. They had the cutest umbrellas designed specifically to combat UV rays. I had to buy one before I left Japan. The only ones I have found at home are Sunbrella, which are utilitarian at best.

So now, in addition to wearing a big hat when walking around LA, I also have a cute umbrella in tow.

Why do I take such precautions? I have had numerous skin cancers over the years. The first one, 34 years ago, was a Melanoma. Why start with the easy stuff, right?  Mr. Twitchy detected that one and sent me to the dermatologist. Fortunately it was barely a stage 1 and only required a deeper cut to make sure everything was out.

Overall, patients with Parkinson’s were roughly four times likelier to have had a history of melanoma than those without Parkinson’s

I have an increased risk of Melanoma because I have had a previous Melanoma, Parkinson’s and the BRCA2 mutation for Breast Cancer.  A triple threat.   There is an interesting relationship between Melanoma and PD.  According to the Mayo Clinic  “Overall, patients with Parkinson’s were roughly four times likelier to have had a history of melanoma than those without Parkinson’s, and people with melanoma had a fourfold higher risk of developing Parkinson’s, the research found.”  *

A few weeks ago, I went to the dermatologist for my semi-annual skin check. I found a spot on my arm that looked new and had her look at it. It had the typical warning signs: two toned, irregular shaped.This image has an empty alt attribute; its file name is image.jpegShe removed it and sent it out for biopsy. Needless to say, I was not surprised when she called to tell me that it was indeed a Melanoma. Again, it was tiny, in situ, which means that it had not spread beyond the initial site into the deeper layers of the skin. I just need to go back and have some more tissue removed.

As I said to my dermatologist, it took 34 years to get a second Melanoma. I can live with waiting another 34 years before getting another one. But until then I will still wear my big hats and now I have that cute umbrella to carry around, too.

So the crazy hat lady will be roaming the streets of Beverly Hills again this summer, Watch out! I am armed!

* People with Parkinson’s should be monitored for melanoma, and vice versa, Mayo study finds

More thoughts on the WPC: Diet and Nutrition

 

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”

It Began with a Crane

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Hope makes you forget all the difficult hours

Soichiro Honda

The 5th World Parkinson’s Congress opened tonight in Kyoto, Japan. With about 3000 in attendance, from 55 countries, the opening session was joyous and tearful. The opening video began with a Crane swooping down into Kyoto. The Crane, in Japanese culture, represents hope. And much of the evening centered around hope.

The winning video was titled “Keep Hope Alive” and featured the late Tom Isaacs being interviewed by filmmaker Anders Leines.

Day 2

After last night’s wonderful conference opening, I looked forward to today’s activities.  The day started with a plenary session on Alpha-synuclean, the protein in our brains that gives us the gift of Parkinson’s.  The session was very technical, and my knowledge and understanding of cell biology was limited to what I studied way back in the dark ages, coupled with the damage done to my brain by that very protein.  

The next session for me was a 2 hour stint talking about my poster to anyone who seemed even mildly interested.  This was the first time I had submitted an abstract to any conference, and the first time I had to actually talk about my own research.  The poster is titled “What are the Most Important Factors for Living Well with Parkinson’s Disease?  An informal survey from a women’s Parkinson’s Facebook Group”.(P41.11)   I enjoyed talking to the people who stopped by, some of whom are readers of my blog and made the effort to come meet me.  I stressed that my results were based on what the People with Parkinson’s said works best for them, and then what are their biggest obstacles for living well with PD.  This is the patients point of view, not what their doctors or others say is best for them.  The high point was being interviewed on video by a v-logger.  The poster will be up until Friday so stop by to find out what the results of the survey.

The best part of being here is meeting up with friends from around the world and meeting people in person who have been following this blog. Here are a few photos from the day.

Lunch!

Barrie Cleveland, v logger

With Andy Butler, Parkinson’s People