Tag: Parkinson’s Foundation

The Power of a Smile

On By skrischerIn Inspiration, Parkinsons Disease1 Comment

Smile though your heart is aching
Smile even though it’s breaking
When there are clouds in the sky you’ll get by
If you smile through your fear and sorrow
Smile and maybe tomorrow
You’ll see the sun come shining through
For you

Nat King Cole, “Smile”

There have been many songs written about smiling. Why? Because a smile is so powerful in so many ways. The very act of smiling makes us feel better. Think about how you feel when someone smiles at you and you return the smile? Smiling releases endorphans and dopamine in our brains, making us feel happier.

In my yoga class, the instructor is always telling us to smile. I often start to laugh when she says that. So I decided to do a little research into why a smile is so good for us.

But first, try it now. Go. Run to the nearest mirror and smile at yourself.

How did it make you feel? Silly? Did you want to laugh? Congratulations, you just gave yourself a dopamine/endorphan rush. What else did you notice? What happens to your eyes? Were they smiling, too? Maybe you even started laughing at yourself. It’s ok. Your entire body reacts to the smile.

A Dog Smiles, Too

Think about your dog, if you have one. When a dog is happy, it’s whole body smiles as it moves with joy – with it’s tail wagging and tongue sticking out. We can’t help but smile back.

Babies know best!

One of the first emotions a shows is a smile. They smile at us, we smile back. They learn very early that if they smile, they get a reaction from you. Everyone feels better because of that smile. The exhausted parents, the grandparents, siblings and friends. A baby’s first smile is a milestone that we celebrate. According to WebMD.com, between 6 and 8 weeks of life, babies develop a “social smile” — an intentional gesture of warmth meant just for you. It shows us that  brain development is advancing and the baby’s communication skills are on track.

BRF

With the facial masking that is so common with Parkinson’s, smiles don’t always come naturally. We may walk around looking angry when, in fact, we are in a good mood. When my kids were in high school, they told me that I had BRF – B***chy Resting Face. Their friends thought I didn’t like them, which of course was not true.. It turned out that this was an early sign of Parkinson’s for me. I wasn’t aware of it. Eventually I noticed that it was getting more difficult to smile anytime. We were traveling a lot at that time, and when I look back at photos of me, my smile was disappearing. I was getting frustrated and stopped trying to smile for the camera. When I finally started taking my PD meds, the masking went away and my smile came back.

Trying to smile in Sydney

As adults with Parkinson’s. We need to be aware that smiling can become difficult for us. As PD advances, our communication skills may diminish. We need that smile to help us convey how we feel.

The Importance of Smiling

Karyn Hall, PhD, in her blog The Emotionally Sensitive Person  The Importance of Smiling, says:

*When you change your facial expression you mood tends to align with the emotion your face is communicating.

*Smiling is contagious.

*When you give a warm and friendly smile, often others will smile back. You get a moment of feeling connected and accepted, and you spread happiness.

*Smiling can help reduce stress. When you smile, your heart rate slows and other stress indicators go away faster than if you don’t smile. Smiling can lengthen your lifespan.

This is the power of the smile. We need to do everything we can to keep on smiling. When you cannot show emotion, good or bad, it makes it very difficult to be a social person. The last thing you want to do is to isolate yourself because you can no longer communicate with others, both verbally and non-verbally, as you had done before Parkinson’s. And don’t forget that the dopamine hits that we get from smiling are very important for our brains. The Parkinson’s Foundation recommends that you see a speech-language pathologist who can teach you facial exercises that may help with masking, as well as other issues you may be having, including speech and swallowing problems.

Go back to your mirror and practice your smile. You can do it. Laugh a little or a lot while you are at it. It may just make your frown disappear.

Image result for smile

Gratitude for a very full, successful year

On By skrischerIn Inspiration, Living Well, Parkinsons Disease, World Parkinson Congress 20193 Comments

Acknowledging the good that you already have in your life is the foundation for all abundance.

“Eckhart Tolle

I have a dear friend who is always cheerful and upbeat. What is her secret? Her ritual every morning when she wakes up is to express gratitude for the things in her life. It’s that simple. Apparently she is not alone. When looking for quotes about gratitude, there were many like this one from Oprah Winfrey: “Be thankful for what you have; you’ll end up having more. If you concentrate on what you don’t have, you will never, ever have enough.” 

As the year comes to a close it is often a time of reflection. We look at what we have accomplished in the last year. What we did not get done, in spite of our best efforts. But most of all, it is a time to express gratitude to those who have come into our lives, and gratitude for the things that we have in our lives. Yes, even if you are living with a progressive disease like Parkinson’s, there are some things that you can be grateful for. If you don’t think so, I challenge you to look around and you will find someone or something that you can be grateful for. And if you can, write it down so that you can look at it again next December. Hopefully, like Oprah, you will have more things to be thankful for.

Here are some of my reflections about the past year and what I am thankful for.

First, I want to express gratitude to my family and friends for always being there for me, supporting my in my endeavors, coming to Parkinson’s events with me and not letting me be a “sick person”. You insist that my life has not changed because of PD, so there is no reason to make accommodations. You encourage me to be independant. And I thank you for that.

This fall marked 11 years since the start of my Parkinson’s symptoms. My diagnosis was confirmed a year later by my wonderful Movement Disorders Specialist at UCLA. At the time, she told me that because I was tremor dominant, she thought I had a very slowly progressing type of PD. And she was right. My meds have calmed my tremor, and most people are surprised to learn that I have Parkinson’s. For this I am very grateful.

I have been fortunate to be able to take advantage of many learning opportunities for People with Parkinson’s. 5 years ago I attended my first Fox Foundation event in Pasadena, CA, which opened doors for me. I learned about boxing for PD that day and started a class a month later in Santa Monica, with what is now called Stop-PD. I have been going to boxing ever since. Unfortunately, in the past 5 years, there have been many times when I am the only woman in the class. Those women who attended quickly became friends. And the guys….well, they have been great. Thank you for all of your support. I love being with all of you. You are an important part of my week.

This year marked the 4th anniversary of a group that I started for women with PD in Los Angeles, which is now called Twitchy Women. We are not a traditional support group. We are more activity based, whether it is exercise, a talk by a psychologist, speech therapist, sex therapist or just exploring our creativity and just having fun. The friendships that have been made through this group are wonderful. And the most exciting news in the last few months is that several major Parkinson’s organizations like our concept so much that they have asked us to encourage other women to start similar type groups in other areas. If you want to start a group where you live, please contact me. I am not only grateful for what this group has given back to me and the other women, but am looking forward to expanding the concept and reaching a wider audience. Thank you to all of those special women who have come into my life because we share the common bond of Parkinson’s.

In June, I attended the World Parkinson’s Congress for the second time. This time the WPC was in Kyoto, Japan, so Mr. Twitchy and I, along with good friends that we travel with every year, took a cruise from S. Korea to Osaka, Japan and then spent 3 days touring Kyoto prior to the conference. Our trip was wonderful. Our friends went on to Tokyo and we attended the WPC. There I got to meet many other bloggers who I have only known on the internet, as well as quite a few followers of my blog. I submitted an abstract which was accepted and created a poster for the poster display. That was a lot more work than I expected. I probably won’t do it again, but I am glad that I was able to do it. But the most exciting part of the WPC for me was that Roni Todaro, VP at the Parkinson’s Foundation, was asked to give an early morning talk about the study she had asked me to co-chair, titled Women & PD TALK. Not only did Roni mention me, but highlighted me in her powerpoint presentation. Roni, I can’t thank you enough for the amazing shout-out!

Because of the new relationships with other bloggers that were nurtured at the WPC, I have had the opportunity to participate in several podcasts, conferences, webinars and more. It seems that the more involved you get in the PD community, the more it opens your world up. We are a small but mighty international group of people with Parkinson’s. We support each other, problem solve together, and reach out to others who are new to our community to ease their path on this journey with Parkinson’s. We are living proof that no one needs to go through this alone. And for that, I am extremely grateful.

It has been a busy year, with many gratifying experiences for me. This is not the future I could have imagined 10 years ago, when getting a diagnosis of Parkinson’s Disease meant losing the ability to live a normal life very quickly. With all of the latest developments in research, people are living better and living longer with PD. Maybe this will be the year that the cure is finally found. And for that, we will ALL be grateful.

This a wonderful day. I’ve never seen this one before.

Maya Angelou

When an emergency strikes, are you ready?

On By skrischerIn Living WellLeave a comment

An emergency evacuation makes you realize you have a lot of junk, so you save a few photos and other memories. Most things can be replaced.

Steven, Getty Fire evacuee

The California wildfires in the last few weeks have wreaked havoc everywhere. Numerous friends of ours were evacuated from their homes in the middle of the night when the Getty fire started. I started thinking about what would I do? Am I prepared? What do you take with you when you don’t know when you will be able to return to your home?

Image result for california fires getty center
pinterest.com

Several of the boxers in my PD boxing class live in the hills above the Getty Center and did not come to our classes last week. When I saw Steven on Tuesday, I asked if he had been evacuated, knowing that he lived in that area. He looked visibly shaken by the experience, which he said was a nightmare. His home is above where the fire started and he could see it spread quickly.

The fire began around 2:00 am. The police came minutes later with their sirens blaring to tell people to leave their homes immediately. Steven does not recall whether he was awakened by the police or by the smell of smoke from the nearby fire.

The first thing he did was call a neighbor to find out where she was going. Her doctor’s office in nearby Santa Monica was open in the middle of the night for those who had to flee. Then Steven and his family gathered up their kids and he went in search of his PD meds. After shoving everything into a bag, they left and headed down the hill to the doctor’s office, ahead of the flames.

Once they were safely out of the area, Steven realized that he did not have his wallet, which meant no ID, credit cards, cash, and more. He could not go back home to get it. He said the experience was very disorienting, and the only thing he could think about was to take was his Parkinson’s meds with him.

The next morning, Steven and his family moved into a friends home for the duration, not knowing when or if they could get back into their home. He says that they were very fortunate to have friends with a luxurious, comfortable home that was big enough for Steven’s family and another family they were all friends with. The only alternatives were local hotels which were very expensive or community centers.

The evacuation was disorienting, as Steven said, and also crazy and nervewracking. They did not know if they would be out for 2 days or a week. After 2 days, he was allowed to go back to his home with a police escort to retrieve some things. Because they were with very good friends during this ordeal, they had some good laughs, and even some gallows humor. So this trip back to the house to get things they needed was dubbed “the trip to get everything of value before the house burns down!” The winds were expected to shift that night and turn the fire towards his home. But they got lucky, the winds died down and so did the fire. Steven said that an emergency like this makes you realize that you have a lot of junk. You need to save a few photos and things that are valuable or are memories. Most things can be replaced. Two days later, after 4 days with friends, the family was allowed to move back home.

How did all of this affect Steven’s Parkinson’s Disease? He said the whole experience is more difficult for people with health issues because they have much more to deal with. He was more disoriented than usual, as he stated earlier, which was probably a combination of PD and crisis. It did not increase his shaking and because he thought clearly enough to take his meds with him, he never missed a dose. Between taking care of everything with his family and the terrible air quality from the fires, exercise was not possible. Overall, Steven feels that he got though all of it ok.

The one thing that was missing in all of this was an Aware in Care Kit that is provided by the Parkinson’s Foundation for free. If Steven had one he may not have forgotten his wallet. The Aware in Care kit has forms to fill out with your medications and other important information. There is also room to keep bottles of all of your prescription medicines. I keep prescription bottles with about 4 days of meds in mine for emergencies. As long as you have the prescription bottles, you can always get refills. I also use my kit when I go on vacation because it is ready to go with everything in one place. For more information or to order yours, click here.

We are thankful that only a few homes were destroyed in the Getty fire and that Steven and our other friends who had been evacuated have returned home. Let’s hope that this is the last of California’s devastating fires this year.

Care Partners and Role Reversals

On By skrischerIn Caregiving, Education & Advocacy, Living Well, Parkinsons DiseaseLeave a comment

Family is not an important thing. It’s everything.

Michael J Fox
Ali Elder, Sharon Krischer and
Adrienne Keener MD

In Jnuary, 2018, I had the privilege of working with two amazing young women, Adrienne Keener MD and Ali Elder PT DPT, to plan the Los Angeles Forum for the Parkinson’s Foundation’s Women and PD TALK study. The end result was the creation of the first patient-centered action agenda to maximize quality of life for women with Parkinson’s disease. We worked together again to present a follow up program, Closing the Gender Gap, on Sunday at a local hospital. The event, sponsored by the Parkinson’s Foundation and [re+active] physical therapy, presented the research agenda for Women with Parkinsons based on the findings of the study.

An interesting thing occurred. We had originally planned to present this only to women with Parkinson’s. However, a significant number of spouses and carepartners came. So we decided that while the women were doing a reflective writing exercise, we would meet with the care partners. They were so happy to have a chance to talk about their issues that it became clear that having a support system for the care partners is just as important as having a support system for the women with PD. Before we could even ask a question,they immediately started talking, looking for answers and help.

It was an interesting group. Two young men were there with their mother and did not know where to turn for information or help. They were doing the best that they could, but really did not understand what their mother needed. They came looking to learn more about Parkinson’s Disease and how they could take better care of their mother. In contrast, there was a retired doctor who was very knowledgeable about Parkinson’s, but was at a loss about the dementia that seemed to be coming more and more of a problem for his wife. Different issues, same solution. They all needed to find out where THEY could get help so that they could be better care partners.

Many of the care partners were taking copious notes and it was clear that no one had asked them what they needed before. Our planned 10 minutes turned into 20 and the discussion could have continued the rest of the afternoon. We were very happy to help them in whatever way we could.

We had been so intent on talking about what is different for Women with Parkinson’s at our program that we forgot that the issues for their care partners are different too. The only thing that we said during our presentation is that the carepartners need to make time to take care of themselves. We did not consider how watching their spouse or mother with PD slowly decline would have such a profound effect on them. Just as the women experienced the role reversal of going from being the nurturer of their parents, spouse or children, the people we spoke to were also going through a change of identity in their new role as carepartner. Many of them were not ready for this.

There is some help on the horizon. When I spoke about the Facebook group for Women with Parkinson’s called Strongher Women, as a good resource for women with PD, founder Jen Parkinson noted that she will be setting up a companion site for carepartners in the near future.

And when I got home, catching up on my neglected emails, I saw an invitation from the PMD Alliance for an event for Care Partners, Adult Children and family or friends of those with PD and PSP next month in the Los Angeles area. How serendipitous! This was exactly what is needed. Just this morning I received an email from the Parkinson’s Foundation that they will be having a webinar on Coping with Dementia for Care Partners on November 5. It just shows that once you identify a problem, the means for a solution will turn up soon.

The main message that we stated over and over throughout the program, is that no one needs to be alone when fighting Parkinson’s Disease. We are there to support each other. And that applies to the Care Partners, too.

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

On By skrischerIn Education & Advocacy, Exercise, Inspiration, Living Well, Parkinsons Disease7 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.