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Sage Sojourns – February, 2021

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You're Only One Swim Away from a Good Mood

by Sage Bennett

 

I was diagnosed with Parkinson’s Disease, PD, five years ago around Valentine’s Day.  I am still coming to terms with what that means. Each day is a little excursion into the question: how can I live well with PD?

Before taking meds and exercising daily, I experienced limitations I do not have today.  Shortly after diagnosis, I decided to swim a few laps after a water aerobics class.  To my chagrin, instead of swimming without effort as I had done since childhood, I was a tangle of arms and legs awkwardly trying to coordinate a swimming stroke. It was as if my brain had forgotten  how to swim. swimAs I kept trying to swim, I breathed in water instead of air and coughed my way out of the pool, dejected and embarrassed.

Soon after I heeded my doctor’s advice: “Try this medication and follow these three best practices-- Exercise. Exercise. Exercise.”  This prescription and the support of others in the PD community have helped me live more fully. Yesterday I enjoyed 45 minutes of carefree swimming. Even though the outside air was chilly the water was warm as I glided back and forth from one end of the pool to the other in effortless strokes of crawl, side, and then back stroke. I swam past pine trees on the left, palm trees on the right. Overhead a baby, blue sky held cumulus puffs of white. A brushstroke of long strands of cirrus clouds swept across the sky, as a rainbow of blue, green, and purple faintly appeared in its center, then disappeared. In the water my movements are fluid. Feeling at one with clouds, sky, and trees, I am grateful for these moments --and living well with PD.

Sage BennettBio

Sage Bennet, Ph.D lives in Laguna Woods with her wife, Sandy, and their two dogs, Chloe and Freddy. She teaches philosophy and world religions online and is the author of Wisdom Walk: Nine Practices for Creating Peace and Balance from the World’s Spiritual Traditions.

 

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Time to Speak Up

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by Lauren Simmons

People with Parkinson's are often told to speak louder or speak with intention.  This is of course because Parkinson's can wreak havoc with our voices and make them soft and hoarse.  Maybe it is time for people with Parkinson's to get loud for another reason. Over 200 years ago, James Parkinson wrote his essay called  Shaking Palsy where he described Parkinson's.  Yes, scientists have been documenting and studying Parkinson's for a very long time.  We have been waiting too long for a cure or at the very least, a treatment that will slow this beast down or stop it in its tracks.  No one seems to know why it is taking so long. Other diseases have received more funding and attention and have gotten results faster.  No one is saying that the people with those diseases aren't deserving of treatments.  We all want health and healing.  I do wonder why funding for Parkinson's from the NIH is going down each year while the number of people being diagnosed is going up. In the book Ending Parkinson's Disease, the authors note that "by 2030, there will be a 10% higher risk of a forty-five year old individual eventually developing Parkinson's disease than there is today."

Dr. Ray Dorsey said, "We know how to prevent Parkinson's. We just aren't doing it."  Are you ok with the status quo?   If not, YOU should be doing something about it. Don’t wait for someone else to take care of it. They might be waiting for you to take care of it.  It isn’t hard to be an advocate and doesn’t need to take a lot of time.  If we all join together, we can make big things happen.

Here are a few things you can do to get started in being an advocate:

  • Read the book Ending Parkinson's Disease and then put into practice some of the suggestions in the book.  This book is a quick read and a fascinating historical account of how others took action to curb pandemics like Polio, HIV, and breast cancer.  (All proceeds from the book go to PD charities).
  • Join the PD Avengers and then attend their online meetings and volunteer to help!  The PD Avengers is a grass roots organization run by people with Parkinson’s who are tired of waiting.  “We are a global alliance of people with Parkinson’s, our partners and friends, standing together to demand change in how the disease is seen and treated.”
  • Download the Parkinson’s Advocacy Toolkit from the Fox Foundation.  The folks at the Fox Foundation will keep you
    updated on policy changes that need to be made in Washington.  They even make it a simple process to write to your representatives.  Change won’t happen if the policy makers hear from hundreds or even thousands of people. They need
    to hear from hundreds of thousands or more.  If every person affected by PD (patients, family members, friends) sent a letter, they would get millions.
  • Share information about Parkinson’s with others.  You can tell friends, neighbors, share on social media or whatever way you feel comfortable but get the word out.  Most people think that Parkinson’s is a disease that old men get that makes them shake.  We know it is so much more.

Together we can make a difference.  It is time to speak up.

 

                            Ending Parkinson's Disease: A prescription for action             PD Avengers      michael j fox advocacy

 

 

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One Day or Day One

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By Lauren Simmons and Tom Sheppard

We did it! We made it through 2020, and a new year has finally come. The beginning of the year is traditionally a time for resolutions, to set new goals, and form new habits. Given the last nine months, we think it might be time to go back to the basics. I often hear people say that they are going to make changes "one day."  Let's turn it around and make those changes on DAY ONE.
Think SMART when making your resolutions. The SMART tool for meeting a resolution helps in doing the things needed to better our Parkinson's lives. Here are some tips for setting yourself up for success:

Make your resolution SPECIFIC instead of general:
General: "I'm going to be more social."
SPECIFIC: "I'm going to call a friend two times a week." 
Answer your what, when, why, who, and where questions.

Make it MEASURABLE. The result has to be measured.
How do you keep track of your progress and know you have arrived?

Make your goal ACHIEVABLE. Working up to walking a few miles a day may be more attainable than planning to run a marathon by June. If you are already exercising, think about what you can do to step it up a notch. Think realistically about what your situation is right now, and then challenge yourself.

Is it RELEVANT? As a person with Parkinson's, what is relevant to maintaining our best health? What is important to you, and is this the right time?

TIME: set an "I did it" date.
Make a schedule. A schedule will help you make that target date. Are you planning to exercise three times a week? Choose the days and times and put them on your calendar. Want to learn a new skill? Mark off time on your calendar specifically for that activity.

START MOVING - IT'S DAY ONE

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Reflecting on 2020

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by Lauren Simmons

Forgive me for the lengthy post;  when looking back at this year, I guess I have a lot to say.

When 2020 started, I was very excited about the things going on in the Parkinson’s community in Orange County. There were multiple support groups meeting every week and the number of fitness classes was growing from one end of the county to the other. Educational events and outings were filling our calendars. Our small group at PD Buzz was busy trying to reach people with PD and keep them connected to all that was happening.

And then came COVID and put a screeching halt to almost everything...at least for a little while. It didn’t take long for the leaders in the PD community worldwide to jump into action. Knowing how detrimental isolation and a sedimentary lifestyle can be for those with Parkinson’s, these professionals quickly adapted and started holding groups and classes online. We all learned a new meaning to the word “zoom.” Our living rooms and garages quickly became gyms and we welcomed support groups, specialists and doctors into our homes via the internet.

Silver Linings
There are some silver linings to this pandemic. Telemedicine has been brought to the forefront and hopefully will continue long after the pandemic is over. Many of us, out of necessity, have overcome technical challenges and figured out how to stay in touch online. Hopefully many of us used our time at home wisely and took the opportunity to work on longstanding projects or to learn a new hobby or skill.
Being stuck at home has given me the time to expand my personal reach into the Parkinson’s community. I have used my time to learn more about web design and figure out better ways to connect people with PD to resources they need to live well. We have had some great accomplishments this past year. PD Buzz has grown and is now offering the same service to people with Parkinson’s in the greater Springfield, Illinois area. In April, we hosted a webinar with Dr. Ray Dorsey, co-author of the book, Ending Parkinson’s Disease. This past week, we partnered with Claire McLean at Rogue PT & Wellness for our first ever Jump Start seminar for those newly diagnosed. We have  wanted a program like this in Orange County for years, and pandemic or not, we made it happen. Our recent partnership with the Parkinson’s Wellness Fund will enable us to reach even further. Together, we can connect more people with resources and help them live well today

Looking Forward to 2021

As I write this, the news is breaking about people throughout the country getting vaccinated. It will still take some time for the vaccines to get to everyone but I can see a light at the end of the tunnel. I pray that we will be singing “Happy days are here again” by the spring or summer. Until then, we need to maintain our safety protocols and wait a bit longer.

We still may have many months at home before things return to our new normal. I encourage you to keep moving. Exercise is medicine. You wouldn’t skip taking your medicine so please don’t neglect your training. If you haven’t been part of a group online yet, give it a try. On PDBuzz.com you can find online exercise classes, support groups, dancing classes, singing groups and more. I urge each of you to step outside your comfort zone and challenge yourself with something new.

Beyond 2021

Looking at the future of the Parkinson’s community is difficult to do without considering the past. It has been over 200 years, and we still have no cure. Although new treatments and medications are hitting the market, Parkinson’s continues to grow in the population. It is the fastest growing neurological disease. Something needs to change and change does not happen without action. On that note, I am asking each and every one of you to join the PD Avengers. There is power in numbers and by joining together, we can demand change in the Parkinson’s world. It is the goal of PD Avengers to unite 50 million voices to end Parkinson's.  If you have PD, love someone with PD, care for someone with PD, are related to someone with PD,  or know someone with PD, please join. It is not a charity.  They will not ask for money. We need to stand together to build a sense of urgency to end Parkinson's.

“The PD Avengers are a global alliance of people with Parkinson’s, their partners and friends, standing together to demand change on how the disease is seen and treated…Our mandate is to use our combined effort, influence and skills to prove Parkinson’s matters and to build a sense of real urgency to end the disease.”

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Being Thankful

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by Lauren Simmons

Can you believe it's November and the holiday season is upon us?  Did any of you anticipate that you would still be hunkering down at home due to Covid?  We may all be celebrating Thanksgiving differently than we expected but we can still be thankful for what we have. I think I have always been thankful for first responders, doctors, nurses, and emergency providers but this year, I am more mindful to thank the essential workers that are keeping life moving along.  While some things like toilet paper and hand sanitizer may have been scarce, we were still able to get most necessities of daily living. That would not have happened without people willing to drive trucks and work in stores.

This year, I am especially  thankful for the technology available so we can keep in touch with friends and even have medical visits right from home. I am thankful to the organizations that are keeping us educated and even entertained with webinars and Zoom meetings on a daily basis.  I am thankful for the support group leaders who continue to check in and keep us connected by holding virtual meetings.  I am thankful for the professionals who have spent hundreds of hours teaching online exercise classes so we can all stay as healthy as possible. I am thankful for the caregivers who have an added burden with Covid, sometimes being the only one that can safely go out and do errands and may be feeling isolated much more than before.  And I am thankful for good health.  I pray that you and your loved ones have stayed healthy through this crisis and will continue into the next year in good health.  During this holiday season, don't forget to thank those who are helping make life a little easier right now.

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Parkinson’s Skin Check

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by Tom Sheppard

This took on real meaning for me a few days ago:

Melanoma is the deadliest form of skin cancer. In the early stages, Melanoma can be treated successfully with surgery alone, and survival rates are high, but after metastasis, survival rates drop significantly. Therefore, early and correct diagnosis is key for ensuring patients have the best possible prognosis. (From Cancer Biology and Therapy Journal)

GOOD NEWS – BAD NEWS

During a routine skin check, my dermatologist said there was a spot that she wanted to biopsy. Fine, I have heard that before and it was never a problem. A few days later, I got the get the call. The dermatologist said, “The results of the biopsy I did last week on your shoulder are back. I have good news and bad news. The bad news is, you have Melanoma, but the good news is, it is very small and we have discovered it early.”

The bad news was apparent to me, but the good not so much. After some research, the good news started to sound better. She caught it early and expected no more problems with that area. However, other spots could show up. The prescription for that is a skin check every three months.

A couple of days ago, I had surgery to remove the Melanoma. It was routine and took about an hour. The aftermath of the surgery is NO EXERCISE for two weeks. It was pretty clear that no compromise was forthcoming.

WHAT SCIENTISTS RESEARCH AND DOCTORS ARE FINDING

Studies suggest there might be a connection between Parkinson’s Disease and Melanoma.  My dermatologist said there have been more melanoma cases in her office since the pandemic started in March. Her colleagues are reporting the same. She isn’t sure why.  Also, she is seeing an increasing diagnosis of Melanoma in her Parkinson’s patients.

IF YOU HAVE PARKINSON’S, SEE A DERMATOLOGIST ANNUALLY!

Don’t count on your internist for a full head to toe skin check. The dermatologist I go to is very thorough.  It’s a hide and seek
game and you want somebody trained in the field. I am asking you to make that skin check appointment now and keep it.

This is not the report I wanted to see but I would rather see it now than a year from now.

Parkinson's Melanoma risk

MAKE THE APPOINTMENT – SEE THE DOC

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Take the Challenge

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by Lauren Simmons

We are now into month five of Covid related lockdowns and restrictions. How are you doing with it?  The doctors and scientists tell us to stay home to stay safe but we have also been taught that socialization and new activities are good for our brain, so what are we to do? Unfortunately, Parkinson's doesn't stop just because we are stuck at home. We still need to keep our bodies and brains active.

What is challenging you right now?

So what have been your biggest challenges during quarantine?  Are you getting enough exercise? Missing hugs from grandchildren and friends? Did you have to cancel summer travel plans? This is definitely a Parkinson's challengechallenging time and it may continue for a while so we need to do  something to stay well physically, mentally, and  socially.  We challenge you to add one new activity this month. (We dare you to try two). Try a new online exercise class, or learn a new skill like painting or knitting. There are a multitude of instructional videos online. Maybe you can join an online bookclub or cook a new recipe each week. How about schedule an hour a day to walk a new trail or in a new park? You could learn a new card game.  You can even play card games online.  Maybe you could play them with those grandchildren you are missing.

It's time to take the challenge!

Check out some of the ideas below.  When you talk to friends and they ask what you have been up to, dazzle them with your new interests and impress them with your enthusiasm. You can do this!  Join us in stepping outside our comfort zone. Take the challenge!  Don't forget to let us know what you are doing.  Maybe some of us would like to try the same thing that you are trying.  You can comment below or let us know on our Facebook page.  Let's leave that comfort zone behind and get started.

Brain Exercises

Hand Exercises

Join Tremble Clefs Singing Group

Learn to Line Dance with RX Ballroom Dance

Learn to Watercolor

Beginning Knitting

Hearts, Pinochle or Bridge?  Try some online card games.

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Communication Challenges with Parkinson’s and in Quarantine

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by Lauren Simmons

Communication can be challenging for people with Parkinson's.  Hearing loss, masked expressions and soft voices can make things difficult. Our recent rules of 6-foot social distancing and wearing masks only compound the problem. At a recent venture to the grocery store, I realized how difficult it was to communicate in my usual way.  I no longer knew what someone meant when they stopped and nodded to me.  I couldn’t see their whole face.  Were they pausing to let me go in front of them?  Were they warning me not to get too close?  Were they smiling or grimacing? Likewise, others couldn’t see my facial expressions.   Here are some things to keep in mind and maybe help you communicate more easily.

Did you know that 70% of communication is non-verbal?  This includes body movement and orientation, hand gestures, vocal intonation, eye contact and facial expressions.  All of this is more difficult to interpret from a distance and from behind a mask. Now is a great time to bump up your verbal skills by working on speaking louder and with intent.  Singing and vocal exercises help a lot. Don’t let the stay at home order deter you. There are online programs to help you out.  Try joining a group like the Tremble Clefs or the Parkinson’s Voice Project.

Keep in mind, if people had trouble hearing you before, they will have even more trouble when your voice is muffled behind a mask.    You are likely to have more difficulty hearing them also. Don’t hesitate to ask someone to repeat themselves.  They may not realize how muffled their voice is behind the mask.  They won’t mind repeating themselves especially if you ask nicely.

Wait to talk until there are no distractions.  If the pharmacy clerk has his back turned or is there is an announcement going on overhead, it will be harder for them to hear you and for you to hear their answer. This is good practice at home also.  Instead of calling to your spouse from the other room, walk in and get their attention before speaking.   Be cognizant of background noises that may interfere like the dishwasher running or the T.V. being on.

Many of us are communicating over the computer these days using programs like Zoom, Google Groups, or Microsoft Teams.    There are a few things you can do to make communicating easier on both ends of the conversation.

If possible, use your computer as opposed to an iPad or phone.  The screen will be bigger and it will be easier to see the speaker.  We all do a bit of lip reading even if our hearing is perfect.  To make it easier for others to see your face, make sure you are sitting with good light on your face.  Also, if you’re the lipstick wearing type, put some lipstick on.  The contrast of your lips makes it easier for others to read your lips.

Using a headset that has a microphone or Airpods, will make your voice louder and clearer to those listening.  This is especially helpful if you have a soft voice.

If you wear hearing aids, find out if they have a blue tooth feature.  Using this feature can take the speaker’s voice right to you hearing aids.

Although not everyone with Parkinson’s, is a senior, the majority are. One third of people over age 65 have some hearing loss and this prevalence is even higher in seniors with PD.  It is a good practice to see an audiologist annually to get a hearing test and since so much of our communication is visual, it is a good idea to have an annual eye exam and make sure your prescription is up to date.

Happy communicating and may we all be able to see each other’s smiles in person soon!

 

 

 

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Reaching the Newly Diagnosed

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Reaching the Newly Diagnosed

 

"You have Parkinson's. Here are your prescriptions for your medications, start an exercise program, and come back and see me in three months.”

That statement, or similar, from the doctor, is one that many newly diagnosed hear. There is often a gap between the doctor's medical advice at the time of diagnosis and additional information that might be helpful to the person receiving this news. So, where does the newly diagnosed person with Parkinson's (PWP) start to learn how to help themself? There is a lot of information available on the Internet, but it can be overwhelming, inaccurate, and sometimes scary. The newly diagnosed PWP should be able to access local resources to start living well with PD as soon as possible, but local resources can be challenging to find.

So where should the information come from? Should the doctors give out the info? Maybe. Probably. Yes. But do they have the time, the information, the inclination? Nevertheless, they are the team leader, and if they could give their PWP some guidance, it would help them get off to a better start. Maybe it could even help slow the progression. The Parkinson's community and most Movement Disorder Specialists agree that a vigorous exercise program slows the progress of Parkinson's, and it should be started as soon as possible after diagnosis. The newly diagnosed need guidance to do this. What kind of exercise, how often, what is available in their area? Is there a local support group? If I want to talk to someone with PD, what do I do?

Here in Orange County, the problem is not the lack of resources for PWP. It is getting the information about those resources to the people with Parkinson's on a timely basis. We regularly hear from people who were diagnosed months or sometimes even years ago, that they are just learning about what is available to them. People often go online first to the national organizations for information, and the national organizations typically aren't aware of all the local resources. PWP need to know what is available close to home. In Orange County, PDBUZZ.COM is an excellent place to start. It is the only all-encompassing OC Parkinson web site. It came into being because we hoped the medical community would guide their newly diagnosed and other patients to the website to get connected to the Parkinson's community close to home. It lists fitness classes, support groups, seminars, events, and support services like PT, OT, Speech Therapy, and counseling. Although PDBUZZ.COM is getting more popular, especially with those who are already involved with the Parkinson's community, we still are not reaching the newly diagnosed as we would like to.

So how can we quickly reach those just starting their journey with PD? This situation is not unique to Orange County. At the recent Parkinson's IQ+You event in Anaheim sponsored by the Fox Foundation, we heard from people all over southern California who didn't know what was available in their area. So the question remains, how do we reach those just diagnosed? We all must continue to work on a solution. If we work together as a community,  we will find the answer.
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Written by Tom Sheppard and Lauren Simmons, advocates in the Orange County Parkinson's Community

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