I Failed at Caregiving 101 and a view from a Caregiver

The other thing I’m going to do is to LISTEN better to my body and treat my health with the same priority that I give to those I love.  Nessa Weinman

Last Friday, Mr. Twitchy had rotator cuff surgery and I became the caregiver for him. I was fine the first few days. He was in a lot of pain and needed a lot of help. And then I failed. FAILED at Caregiver 101. Big time! I am not sure if it is the Parkinson’s but as he got better, I just could not focus on my caregiving responsibilities.He went to take a shower, I went downstairs to get something and forgot to come back upstairs to help him. And that was just the beginning. Things continued to get worse as the day wore on.

When I was working on the Women and PD TALK study with the Parkinson’s Foundation, I had the opportunity to interview women with PD around the country. A number of them were in the role of caregiver for an ailing spouse. Many of them talked about how difficult it was for them to take care of their own needs with PD and be the primary caregiver for another person. Honestly, I don’t know how they do it long term.

Caregiving takes its toll on many spouses, even those who do not have Parkinson’s. Nessa Weinman, whose husband, Mike, has Young Onset PD, is a fixture in the Los Angeles Parkinson’s community. What follows is her story of the toll that the stress of caregiving can have on the caregiver.

A Caregiver Lesson Learned

by Nessa Weinman

The risks of being a caregiver is that we are HUMAN BEINGS and sometimes we get sick. Almost every caregiver I know puts their loved one’s health above their own. I care for my husband who has had Parkinson’s for 19 years, he was diagnosed when he was 36.  He’s had deep brain stimulation surgery, two seizures, a number of falls that have sent us to the ER and his colon burst and he became septic and gravely ill. All this and we are only 55.

I’m active in the Los Angeles Parkinson’s community and for years I’ve volunteer to run two support groups a month for caregivers and people with Parkinson’s. I often attend a caregiver’s group and participate in an on-line caregiver group.

I think I take care of myself, I go to the gym 2-3 times a week, take walks, I keep up with my mammograms and I eat mostly organic and healthy. But, since Thanksgiving I haven’t been feeling very good. I got an UTI (urinary tract infection) that wouldn’t go away. I started self-diagnosing myself and using over the counter or homeopathic treatments. Come March I realize I’ve been hurting for a long time. I saw my GP, an Urologist, a Gynecological Urologist and nobody could accurately say why I was hurting so much. By the time a doctor gave me a prescription for antibiotics for another UTI it was too late. That night and into the next day I was vomiting nonstop and had

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Nessa and Mike Weinman

a high fever. My husband insisted we go to the ER and my son and his friend got us there and me inside.

I had a bad UTI, and a kidney infection and was admitted to the hospital. After 2 nights on IV antibiotics, my liver enzymes began to spike which added 2 more nights in the hospital. After the liver specialist changed my antibiotic, my liver enzymes began to lower.

Finally, we were able to leave the hospital and begin to acclimate to being home again. But then I wasn’t much of a caregiver, and my husband and sons helped to take care of all of us. I was still in a lot of pain even after I got home. I followed up with my GP a few days after I got home and I told her I suspect a yeast infection. She didn’t think so but I made her swab for a culture. An agonizing few days later the test was positive and I had another infection. I don’t mean to be offensive to anyone, but my poor vagina had been through a lot. I had pain that was worse than the aftermath of giving birth (to 3 sons).

After my physical symptoms resolved, my emotions were completely out of whack and I dealt with high anxiety, depression, fatigue and apathy. My mom, husband and 2 sons along with 3 friends visited me in the hospital, but I didn’t receive support from many other “friends”. I didn’t want to burden my Parkinson’s Support Group members with my problems, but in retrospect I should have. They would have helped with food, driving my husband and keeping me company – BECAUSE THESE ARE MY PEOPLE. Even though they are busy, they understand me, love me and support me. It was silly not to reach out to them, I’ll remember that next time.

The other thing I’m going to do is to LISTEN better to my body and treat my health with the same priority that I give to those I love. Lesson Learned.

nessaweinman@yahoo.com

 

Because it is World Parkinson’s Day….

There are many things I want to share with you.

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Yesterday, the first #ParkinsonsEve took place in Great Britain.  I wish I could have attended, but going to Kyoto is a priority this year.  However, those of us who stayed home will have an opportunity to watch at least some of  the conference in the next few days.  Stay tuned for the info on where you can watch it online.  For more info go to parkinsonseve on Facebook.

Update 4/15  Click on the video to see all of the conference speakers:

 

This month, the Parkinson’s Foundation wants to know your 🔑  to living well with PD.

Whether you are living with PD, are a caregiver or a healthcare professional, tell us your tip. From managing freezing to sleeping and bathroom tips — no topic is off limits. Our hope is that others can replicate your tips and make their life just a little easier.

Click here:  #KeyToPD  to share yours.

My  #KeyToPD Finding new friends with PD who understand how you feel.

12 Things You Don’t Understand About Parkinson’s Unless You Have It

Are you familiar with the website The Mighty?  I was not until contacted earlier this week by them to contribute a few quotes for  12 Things You Don’t Understand About Parkinson’s Unless You Have It,  which was published today. The Mighty, according to their website, is a digital health community created to empower and connect people facing health challenges and disabilities.  There is a Parkinson’s community on the website that you can subscribe to, and you can also share your stories, ask questions and connect with other Parkies.

Francesca ParkinsonsChampions Villa's photo.

 

And finally, there were problems with the survey that I sent out a few weeks ago asking how YOU are living well with Parkinson’s Disease.  I want to thank the 139 people who completed the survey, but unfortunately,  I will not be able to use the data.

I am going back to the questions as originally posted on Facebook.

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 

Click here to take the survey.  Any answers sent by email will not be included in the final report.  Please respond by April 22.  Thank you in advance for helping out.

 

 

 

 

 

Clinical Trials for Parkinson’s Need You!

The answer is truly in all of us, working together. International collaboration is essential for speeding a cure for the 5 million Parkinson’s patients worldwide.

— Michael J. Fox

 

You may ask why you should participate in Clinical Trials for Parkinson’s Disease.   After all, aren’t they always drug trials?  You say you don’t want to be a guinea pig for a pharmaceutical company.    Well, the good news is, not all clinical trials involve drugs.  The bad news is that many researchers cannot complete their studies because not enough people participate in them.

Since being diagnosed 10 years ago, I have participated in a number of studies.  Some of them on-line, some by telephone, and others in person.  Many provide some form of compensation.  One study was a long-term study though the Alzheimer’s Center at UCLA which recruited people with Neurological disorders to look at cognitive differences.  Three years in a row, I was given a 3 hour cognitive test by graduate students, doing tasks such as recalling as many items as possible from a list of 20 words – our brains usually can process a string of 7 items, which is why your phone number is 7 numbers.  Anything over 7 can be difficult to retrieve.  Other tasks included looking at shapes and being asked to replicate them from memory, repeating paragraphs that are read to you, counting, etc.  Unfortunately this study was discontinued due to lack of funding.

This past week I went to USC – University of Southern California (I had to give the other LA university equal time), to work with Dr. Giselle Petzinger, whose research focuses on the effects of exercise on Parkinson’s.  This time, she is looking at the association between fitness and cognitive performance in Parkinson’s Disease.  She wants to see which PwP’s are doing well cognitively and if there is a correlation with the types of exercise they are doing.  This is an 18 month study that involves 3 visits to USC and using wearable devices for 1-week every 3 months.  I was number 15 in the study.  She needs 35 more people to complete the study, but recruitment is going very slowly.

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Stepping over an “obstacle”

The first day included a 3 hour cognitive assessment!  I remembered a lot of the exercises from the tests at UCLA.   I think everyone uses the same resources for measing cognitive ablility.  Day 2 began with a brain MRI.  Then the fun began.  I was escorted to a lab where I got to try out Virtual Reality.  After putting some sensors on my arms and legs, I put on the VR headset, excited to check it out.  I was in a waiting room of some sort, with all kinds of video games on the shelves.  The 360 view was amazing as I turned my head.  But no, that wasn’t for me to use.  Instead I was to walk down a long hallway (I did this on a treadmill) stepping over obstacles of 2 different heights.  Then I had to do it over and over, each time with different instructions.

Day 3 was even more interesting.

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Looking like a Christmas Tree

I repeated the task from Day 2 two more times and then I spent the next half hour getting even more sensors for my last walk on the treadmill.  Have you ever seen how CGI (Computer Generated Imagery) is done to animate a computer designed animal?  That is what I looked like.  Mr. Twitchy says I looked like a Christmas tree!  This last task was to look at gait and balance.  The treadmill has two separate treads that you walk on.  While I was walking at a fairly quick pace, one of the treadmills would slow down or speed up with no warning.  My job was to keep my balance.  I was tethered by a harness so that I would not fall.  After more gait and balance tests I was sent home with my wearables (watch and heart monitor).  I am looking forward to seeing the results of this trial.

How do you find a study that works for you?  You can start with Fox Trial Finder.  It is easy to register, and you will receive notices of trials that you qualify for.  The Parkinson’s Foundation has been following over 12,000 people in 5 countries with the Parkinson’s Outcomes Project.  Check it out to see if you can participate.  Ask your Movement Disorders Specialist or Neurologist if they know of any trials near you.   Ask your PD friends if they know of anything.  If you are interested in the USC trial, contact me at twitchywoman18@gmail.com and I will forward your info to Dr. Petzinger.

April is Parkinson’s Awareness Month.  My challenge to you for April is to find a way to get involved in research.  You can make a difference in your life and the lives of others.  Think about it.  But not too long.  As the Nike ads say “Just Do It

Women and Parkinson’s: Closing the Gender Gap in Research and Care

When I first experienced PD symptoms, they were explained away as the stress of a working mom. I was prescribed medication for anxiety and the eventual diagnosis of Parkinson’s was not made for another two years. – Carol Clupny, MS, Women and Parkinson’s Advocate

Five years ago, a question was posed to the Parkinson’s Disease Foundation (now the Parkinson’s Foundation) by a woman with Parkinson’s Disease:  “Why are women with PD treated as little men?”  Most research did not include women, medications tested only on men were given to women in the same doses, symptoms varied, and more often than not, it took women much longer to be diagnosed and then treated for PD.  This one question led to the Women & PD Initiative hosted the Parkinson’s Disease Foundation in September 2013.  I was one of 25 women who attended and it changed my outlook on life with PD.

A year later, I was asked by Ronnie Todaro, MPH, Executive VP, Parkinson’s Foundation, to be part of the leadership team, along with Allison W. Willis, MD, MS, Assistant Professor of Neurology and of Epidemiology University of Pennsylvania School of Medicine, and Megan Feeney, MPH, from the Parkinson’s Foundation, to explore these issues more deeply in order to identify what was needed for better care and treatment of women with Parkinson’s.   This nationwide study titled The Women and PD Teams to Advance Learning and Knowledge (Women and PD TALK)  was made possible through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (3998-PDF).

A research and care agenda was derived from 10 regional forums, as well as a national forum, hosted across the United States, to understand the experiences of women with PD. This agenda reflects the priorities identified by women with PD, medical professionals and care teams at these forums. The purpose of this agenda is to promote research and care practices that enable women with Parkinson’s disease to maximize their quality of life.   I have included the 9 priority areas that have been identified below.  You can read the entire publication here.

Women and PD Research Needs

Research

  1. Inclusiveness: Parkinson’s cannot be fully understood without increased representation of women in PD research, the mechanisms, progression of and treatment response.
  2. Relevance: Parkinson’s research must examine the effects of biological sex — including sex hormones as they relate to PD risk, progression and response to treatments.
  3. Quality: Existing data should be pooled and analyzed for information about women with PD.

Care

  1. Accessibility: Parkinson’s care must be more accessible to women. Programs should target health, wellness and management of PD and should help women feel comfortable and included.
  2. Personalization: Parkinson’s care should be personalized to women. Biological and gender/cultural differences influence PD health outcomes and programs should be designed to address these differences.
  3. Communication: Medical professionals and women with PD should utilize shared decision-making tools to better communicate and work together to identify goals for treatment.

Education and Empowerment

  1. Self-management: Provide women with Parkinson’s with the knowledge and tools early in their diagnosis to maintain a desired quality of life.
  2. Shared Responsibility: Care teams should better understand the needs and priorities of women with PD, being more involved and not relying on the woman to understand all aspects of her disease.
  3. Advocacy: Additional education efforts are needed to increase public awareness about PD.

I personally want to thank everyone who attended our 10 Forums and the National Forum, along with Ronnie Todaro,  Dr. Allison Willis and Megan Feeney, who worked so hard with me to ensure the success of this project.   My hope is that with this agenda, we now have the tools to reach out to physicians, other health care professionals, family members and anyone else who helps to provide care and treatment of women with PD, so that we, as women with PD, will no longer be treated just as “Little Men”.

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!