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.

More thoughts on the WPC in Kyoto

There were many inspirational moments at the WPC.  I have already written about some of them, and will highlight a few more today.

The most inspiring speaker of the WPC was Dr. Linda K. Olsen, who gave the keynote speech at the opening.  Dr. Olsen lost both of her legs and and arm in a car and train accident over 30 years ago.   Many years later she was diagnosed with Parkinson’s.  Her indomitable spirit is amazing.  Enjoy the video of her speech from Tuesday night.  Turn up the volume, because it is a bit muted.

Thursday, June 6

Thursday at the WPC started early.  Ronnie Todaro, from the Parkinson’s Foundation was presenting at Hot Topics at 8:00 am.  Her presentation “A Closer look at the unmet needs, research and care priorities for Women with Parkinson’s” was about the Women and PD Study that I had been a co-chair of for the last two years.

Getting a shout-out from Ronnie Todaro at her Hot Topics presentation was the highlight of my day!

I then went to the PD Movement Lab with Pamela Quinn, which was terrific.  Here is the description of the session from the program catalogue:

“Using a wide range of dance moves, great music, and practical cueing strategies, we use a wide range of dance movements, wonderful music and practical cueing strategies, we challenge the body, defy our expectations, and  Challenges the body, violates our expectations, and enhances our spirit.”

Mr. Twitchy and I went to a showing of the film “Kinetics” (https://www.kineticsfilm.com/) by Sue Wylie.  Then went to get our Bento box lunches for the day, only to find out that there was a glitch with the caterer, who did not provide enough and they ran out of food!  After scrambling to find something to eat, I missed almost all of the noon talk by Nobel laureate Shinya Yamanaka on  “Current status of iPS cells and efforts for medical application”.  I will have to watch the video later.

My final session of the conference was a round table discussion on “Staying positive and engaged after a Parkinson’s diagnosis, advice from a PwP and care partner.”  I decided to check it out because one of my Parky friends was leading the discussion.  Since there was a Japanese interpreter at the session, most of the participants were Japanese and much of the time was spent translating.    I think everyone got something out of the session, but it was hard to tell because of the language barrier.  I had to leave a few minutes early to catch a train to Tokyo.

One thing I learned today is that I apparently missed some very good sessions throughout the three days for various reasons.  Will have to catch up by watching what is available on Youtube. Right now, you can view some highlights by Sarah King at by clicking here. At the end of the conference it was announce that the next WPC will be in Barcelona from June 7-10, 2022.

What helps you to live well with Parkinson’s Disease?

You must do the things you think you cannot do. – Eleanor Roosevelt

Since March is Women’s History Month, I will be including some quotes from some amazing women who have made a difference.  Look for more scattered throughout the blog posts this month.

And speaking of women,  I submitted an abstract to the World Parkinson’s Congress about a survey that I posted on a women’s Parkinson’s Disease Facebook group.  My abstract was accepted and I will be showing the results on a poster in the Poster Display  during the conference.

As a blogger who writes about living well with Parkinson’s, and having been a co-lead on the Parkinson’s Foundation’s groundbreaking study on women with PD last year, Women & PD TALK*, I was curious about what other women with Parkinson’s think contributes to their continuing to live well with Parkinson’s.

I asked the following questions  in November, 2018.

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

I now want to open the survey to anyone who is interested in participating.  The difference is that this time I am asking you to choose 3 things from the list of the most common responses that I received last time.  And of course, there will be room for additional comments at the end.

This survey will self destruct, in about 10 days so that I will have time to look at the results and write a summary and create a poster for the WPC which starts on June 4.  Being the Parkie that I am, I need the pressure to get this done.   So please respond quickly so that I don’t have to scramble like Cinderella to get to the ball!

Be kind, have courage and always believe in a little magic.
― Cinderella

And the survey says……..click here to participate

 

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  • Watch for the Women & PD TALK outcomes here in the next few weeks!

Fighting Parkinson’s Every Day

I used to say I knew people in show business, now I say I know people with Parkinson’s. Barry Blaustein

 

UNADJUSTEDNONRAW_thumb_756fBarry Blaustein joined our boxing class a couple of years ago, not long after he was diagnosed with Parkinson’s Disease.  It was clear from the outset that Barry is a fighter, in so many ways.  With flowing white hair and a big smile, he attacked the heavy bags with glee.  His strength and skill on the heavy bags impressed everyone in our little group.  Barry fit right in immediately.

His story, like so many of ours, takes a circuitous route.   Barry lost his sense of smell 7-8 years ago.  Then began dragging his feet.  His voice was getting lower and he just seemed sluggish.   He did not know that these were symptoms of Parkinson’s.  First, Barry saw his regular doctor, who dismissed his symptoms and said that he did not have Parkinson’s.

The symptoms persisted, so Barry made an appointment with a Neurologist at Cedars Sinai in Los Angeles.  The doctor there put him through the routine for diagnosing PD, walk down the hallway, open and close  your fingers, tap your foot, etc. and quickly confirmed that Barry did have Parkinson’s.  Since no one else in his family had PD, this was a surprise.  As Barry says, he is the pioneer in his family.

The doctor recommended that he exercise 30-35 minutes a day. Barry’s fiancee  looked up classes on the internet and found boxing classes for PD (StoPD).  He took boxing lessons when he was younger and knew he had fun doing it, so decided to give it a try.  Barry also walks 30-40 minutes or bikes, and goes to Pilates a couple days a week.  He usually exercises 7 days a week,  but occasionally takes a day off.  However he has recently developed sciatica,  which Barry says is much worse than Parkinson’s.

“People with Parkinson’s are fighters”

He asked his doctor once why he chose to treat Parkinson’s, the doctor said “People with Parkinson’s are fighters”.   Barry agrees.  “We don’t sit back and do nothing.  I didn’t do anything to get Parkinson’s (unlike many other diseases) If I had cancer and  smoked cigarettes, I would say I shouldn’t have smoked.  If I had heart problems or a heart attack, maybe I should have lost some weight.  But I didn’t do anything to cause PD.”

He is fortunate that he gets more sleep, unlike many others with PD.   Melatonin works for him and helps him to sleep better.  Otherwise, he takes Sinimet (Levadopa/Carbidopa) only. His tremor has gotten a little worse, but he notices it more than other people.  He also gets more tired,  but that could be from getting older.  His handwriting, which was always terrible, has gotten really bad.  Now he says  “I will write stuff and then will look at it and think, what the heck was I doing”.  Usually he types and if he starts to shake, he will stop and exaggerate the shake and shake it off.

Having Parkinson’s doesn’t really affect his work.   After a long career as a film writer and director, he turned to teaching screen writing at a local university.  For the last 7 years, he has been primarily a college professor.  He tells his students he has PD, always making the same speech at the beginning of a semester:  “I have Parkinson’s so if you see me shake, that’s a tremor from Parkinson’s, so don’t worry about it. If my voice gets low, just tell me to raise my voice, if I say anything really mean to you, that’s not the Parkinson’s, its exactly how I feel about you.  They all laugh.”  He approaches it with humor which puts them at ease.

Recently, he went back to writing scripts and along with his writing partner David Sheffield, he just wrote a new movie for Paramount:  COMING 2 AMERICA,  a sequel to COMING TO AMERICA, that the two of them wrote 30 years ago.   “They didn’t know it was being written by a guy who has Parkinsons”

This past year, Barry has gotten involved with the Parkinson’s community.   Last fall, he was a speaker at the Parkinson’s Foundation Walk in Los Angeles. He had participated in a few walks before and his daughter got very active with the Parkinson’s Foundation as a result.  She created some background materials about Barry to send to them.  After meeting with with Barry, they asked if he would be interested in speaking publicly for them.  He went to a workshop a couple of weeks ago and was asked to become a spokesperson for the Foundation.   He will be going to speak around the country, do some PSA’s (Public service announcements) and other things.  As he says, he is the new “Jerry’s Kid”.  He used to say, “I knew people in show business, now I say I know people with Parkinson’s.”

What does the future look like for him?  So far he has made no major changes in his life,  but knows he will eventually have to consider making a move because he lives upstairs in a duplex, and the stairs can become a problem.   He is looking forward to speaking on behalf of the Parkinson’s Foundation, and becoming more involved with the Parkinson’s community.

I asked if knowing People with Parkinson’s has changed his life.  He went to a support group once but didn’t find it all that helpful.  He said that too often, people are just griping.  However, Barry said the people in the boxing class are very brave. “I wish our boxing group got together every once in awhile and talked about our lives.  We are more than just our disease.”   What a great idea!  Let’s make it happen.

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Year End Musings

Wow, another week and we start a new year!   So much has happened in the last year on the  personal front and in the Parkinson’s world.

It has been a good year for Mr. Twitchy and me.  We welcomed our fourth grandchild in April.  My Parkinson’s has remained fairly stable since being diagnosed about 10 years ago, for which I am eternally grateful.  So other than the usual aches and pains of growing older or as a result of stupidity on my part for thinking that I can still do things I did at 20, (we don’t want to talk about that),  life is pretty good.  Mr. Twitchy had back surgery in July and is looking at replacing knees or hips or some other joint sometime in the not too distant future.  None of this stopped us from going on adventures to Israel and Iceland this year, although it may have slowed us down a little.

In the Parkinson’s world, we are busy planning our trip to Japan and the World Parkinson Congress in June.  I am looking forward to hearing about the latest research on PD. There are so many new theories that are being investigated about the causes of PD, where it starts in the body and why, as well as new breakthrough treatments that are in the final stages of clinical trials.   Some of this research is going on in Kyoto right now, so my hope is that we will hear the latest from those doctors and scientists doing the research when we are there.

One project I have been involved in is the  Parkinson’s Foundation’s national effort to address long-standing gender disparities in Parkinson’s research and care through the “Women and PD Teams to Advance Learning and Knowledge,” or “Women and PD TALK” project.  I have been honored to be the co-chair this project.  We held 10 forums around the country in the last 12 months, bringing together women with PD and caretakers, doctors, therapists and other related professionals.  A final national forum in Houston last October brought together the chairs of the local forums along with national leaders with the goal to create an action plan for the treatment and care of Women with Parkinson’s, which will be published in the next few months, in time for the WPC.

Trying something new for sleep:

My daughter suggested that I try a weighted blanket for sleep.  I am trying out the Brookstone Nap Weighted Blanket and will write about my experience with it in the next few weeks.   There are a lot of choices and things to consider when buying a weighted blanket so I want to get some more information before I write about them.

Some good news just off the press:

Acorda Therapeutics, Inc.  today announced that the U.S.
Food and Drug Administration approved INBRIJA™ for intermittent
treatment of OFF episodes in people with Parkinson’s disease treated
with carbidopa/levodopa. OFF episodes, also known as OFF periods, are
defined as the return of Parkinson’s symptoms that result from low
levels of dopamine between doses of oral carbidopa/levodopa, the
standard oral baseline Parkinson’s treatment.

Finally, I have been approached by several different bloggers this past year for interviews .  The latest was published this week by Kai Rosenthal on her blog  a simple island life.  Kai lives in Honolulu, and blogs about PD, lifestyle, food, fashion and other things she loves.  It is an interesting mix of ideas that she puts together beautifully in her blog.  I hope you enjoy it.

You can find links to other interviews and more by clicking on Press at the top of this page.

Looking ahead to 2019, I wish all of you a very wonderful, healthy new year, with lots of good news in the PD world.  Merry Christmas and Happy New Year!

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