Reaching a Milestone and an Inspiring New Book to Read

On May 3, 2019May 3, 2019 By skrischerIn Book Reviews, Education & Advocacy, Exercise, Inspiration, Living Well, Parkinsons Disease, World Parkinson Congress 20193 Comments

Look at you. You’re in Spain. You’re walking out here on the Meseta. How many people are doing this? How many people with a chronic disease do you see out here today?……Do something good, Carol. Find something good to do with it.” From The Ribbon of Road Ahead

Twitchy Woman has reached a milestone. This is post #201 ! ! ! When I started this blog, I never expected it to continue for as long as it has. And what a ride it has been. Somehow, I have posted almost weekly in the last 4 years, and am honored to have made Best Parkinson’s Blogs lists at least 6 times (see the sidebar). Other opportunities for me have come up as a result. I want to thank everyone of you who has been following me, whether it has been for 200 posts or just 1. My initial blogpost was seen by just 15 people. There are now over 1500 followers. Your support and encouragement have kept me going.

On my way to Kyoto!

Speaking of opportunities, as you may know, I submitted an abstract to the World Parkinson’s Congress. At medical meetings, researchers are asked to submit abstracts (a brief description of their research study). If their abstract is accepted, they will then create a poster based on their research for display. For the WPC, People with Parkinson’s (PwP’s) were also encouraged to submit their ideas (abstracts) for living well with PD. There will be hundreds of posters on display throughout the conference. If you are attending the WPC, look for me on Wednesday, June 5, between 11:30-1:30. I will be at my poster in space 649 to talk about it and I would love to meet you.

Thank you to all who responded to my survey for this project. I cannot give you the final results until after the WPC, but the most important things for someone to live well with PD are Exercise and Getting Enough Sleep. Neither of these should be a surprise for anyone with PD. If we don’t have a good night’s sleep, the daytime fatigue can be debilitating. And that fatigue manifests itself in many ways.

As far as Exercise is concerned, the more you do, and the more intense it is, the better. I had hand surgery last Thursday and have not been able to exercise since. I am already noticing, 5 days later, that my tremor is acting up more. We need to think of Exercise as medicine, and I have not been taking my medicine.

The Ribbon of Road Ahead

And speaking of exercise, I just finished reading an inspiring new book by fellow PwP, Carol Clupny titled The Ribbon of Road Ahead. After her diagnosis of Parkinson’s, Carol was determined to walk The Camino de Santiago. If you have traveled in northwestern Spain, from Pamplona to Santiago de Compestola, you may have seen hikers walking along the route marked with seashells pointing the way. Pilgrims from all over the world come to walk on this grueling 500+ mile network of pilgrim routes, from Southern France to Spain, for many different reasons, often hiking through rocky mountain passes. The Way, as it is called in the movie with Emilio Estevez and Martin Sheen, is difficult for anyone without disabilities, but Carol was not going to let that stop her. With her husband, son and other family members and friends at her side, she recounts the obstacles she faced as well as the accomplishments.

Carol went back 2 more times to walk parts of the trail with other women whom she had met along the way. She has also biked across Iowa 3 times with her husband on the annual 450 mile RAGBRAI (The Register’s Annual Great Bicycle Ride Across Iowa) with the Pedaling for Parkinson’s team. Much of the ride was done on a tandem bike named Grepedo. She did all of this before her DBS surgery a couple of years ago. The final chapters recount her surgery and the small successes that were the beginning of regaining her life before PD. Her story is inspiring, and shows that determination and grit can help those of us with a chronic illness get through some of the more difficult times. Carol has indeed done something good by sharing her story with us. Look for Carol at the WPC in Kyoto if you are there.

Matching Slings

On April 27, 2019 By skrischerIn Living Well3 Comments

Turn! Turn! Turn! To everything There is a Season Pete Seeger

Most of us boomers know that Pete Seeger’s “Turn! Turn! Turn! To everything There is a Season” (my favorite version was by the Byrds) was taken almost verbatim from the Book of Ecclesiastes. Well, the Bible and Pete missed a season – the Surgery Season, which is taking hold in Casa Twitchy right now.

I wrote about Mr. Twitchy’s shoulder surgery a couple of weeks ago. This week it was my turn. I have been having difficulties with my right hand for a couple of years. A stubborn trigger finger came back – worse – after 2 cortisone shots, accompanied by carpal tunnel in the same wrist. At first, I thought the numbness and tingling in my fingers when I woke up was from PD, but wearing a brace at night did not help. After several visits to a hand surgeon over the last two years, the consensus was to fix them both surgically. That it was my dominant and Parkinson’s side was of some concern; that it became difficult to hold a tennis racket or a pen was what really ticked me off.

My hand doctor is very young. VERY young. But very highly regarded and I had gained a lot of confidence in his judgment. (OK, very handsome, too.) He kept referring to what we were doing as a “procedure.” Seems to me that, if you are dealing with a scalpel and anesthetic you are talking “surgery.” But, if it has to be done, a rose is a rose. Or whatever.

All of us have been through this drill, even for a mere “procedure.” Arrive early. Fill out paperwork. Wait to be called (even minutes seem like hours). Go in for prep. Change into the stupid-looking gown. Get the IV started. And on and on. It all went smoothly, and as the very nice volunteer who was helping me (turns out he’s a retired lawyer who had represented many of the doctors at Cedars) assured me that my doctor was outstanding, there he was, walking in with his backpack and . . . breakfast[!!!]. That visual made him look like he was about 18! Had he gotten younger? Or had I aged another 20 years in the last two weeks? Or ten minutes?

I settled into my hospital bed and the nurse went over all of the details and my meds with me. I mumbled something about the cocktail of PD meds that I think is overwhelming but she sweetly assured me that, in the scheme of things that she sees, this was nothing. (Fortunately in this regard, I was able to take my Sinemet that morning, so at least I was shaking only a little.)

The bottom line is everything went fine. The “procedure” took less than an hour by my count. My now under-aged doctor assured me that both procedures had been unquestionably necessary and I would feel much better. And he said I would be close to fully recovered in about three weeks. More importantly, I could get back to tennis again soon. My hand was wrapped in gauze, and I was given a sling with orders to keep my hand elevated. Mr. Twitchy and I went home with our matching slings.

Image result for carpal tunnel surgery funny images — My good hand battled with the Tylenol bottle in the middle of the night, with no success

The perspective came the next day. Mr. Twitchy’s cousin (separated in age by 29 days) saw the post and called to check on us, but also to use the occasion to reveal that she has been dealing for several months with a very nasty cancer situation and that her husband has had some recent significant and challenging health issues as well. Perspective.

So I joined Mr. Twitchy in the ranks of the disabled. We had to schedule our surgeries so close together (2 weeks) in large part so we would be recovered enough to attend the World Parkinson’s Congress and a pre-trip we had scheduled before it. I know my sling will be gone; he will probably have his along for protection while traveling. But the next couple of weeks will certainly be interesting.

And it all made me think about Mr. Twitchy’s words in the guest post he wrote couple of months ago about our sacred duty in these matters:

Each of us has to accept that, as long as we are on THIS side of the sod, something is going to get us. And that it is our duty to deal with whatever that is as best we can, to stay on THIS side of the sod as long as we can, and to be as happy about that as possible.

Humor and perspective. The sword and shield to guide us through the slings (pun intended) and arrows of aging.

I Failed at Caregiving 101 and a view from a Caregiver

On April 19, 2019April 19, 2019 By skrischerIn Caregiving1 Comment

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

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….

On April 11, 2019April 16, 2019 By skrischerIn Education & Advocacy, Inspiration, Living Well, Parkinsons Disease, Research & Clinical StudiesLeave a comment

There are many things I want to share with you.

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.

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!

On March 31, 2019 By skrischerIn Exercise, Living Well, Research & Clinical StudiesLeave a comment

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.

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.

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“