Avoiding the Corona Virus

I really did not want to contribute to the conversation flooding the internet about the Novel Covid-19 (Corona) virus, but given the chain of events in the last 48 hours, it is somehow unavoidable. No one, including Mr. Twitchy and me, has been able to ignore it.

Last week, we were in Washington DC for a conference. We flew home Tuesday night knowing that we had a very full schedule ahead of us at home.

And then the world collapsed. The Corona virus had spiraled out of control in several countries and was threatening more, including the United States. The Stock Market fell precipiticely, recovering partially one day and then falling even more the next. It is chaos out there and very scary on many levels.

On Thursday, two days after we returned home, we received an email from the conference that we had attended stating that two people who were at the same meetings tested positive for the bug. Since we don’t know who those people are, it was recommended that everyone who was there put themselves under voluntary quarantine for 14 days.

Image result for coronavirus meme
Paleontology US blog

We continued with some of our plans when we could keep away from other people and then suddenly, everything was being cancelled. From small meetings to huge sporting events. Nothing was spared. My daughters became concerned about our health and asked us to please, please stay home. I have been going out as little as possible, and am doing a lot of reading and other things that I needed a day home to do. So far, we are feeling fine and hope that by Tuesday, we will be able to go out freely again.

In the meantime, on our only short outing today, it was strange to go to the bank and see the bank tellers wearing surgical gloves to make transactions. At the drug store, a clerk, wearing gloves of course, was handing out packages of toilet paper to customers willing to pay double the usual price. We have been told that the shelves at Costco are bare, as are their online stores. The streets are empty. Restaurants are struggling. The unintended consequences of all of the cancellations affect every segment of society in unimaginable ways.

A trip to the market this morning was horrific. Huge crowds, no carts and nothing on the shelves. Everyone is in panic mode, stocking up for a very unsure month or two ahead of us.

How does all of this affect people with chronic illnesses, such as Parkinson’s Disease? When social distancing becomes the norm in order to make it harder to spread the virus, as it has in the last week, social isolation can become a huge problem for many of us. Unfortunately many of us fall into the older adult category that seems to be more susceptible to Covid-19. Fear can be a big factor. It can keep you from getting out of your house to go to the doctor, therapy and your much needed exercise classes. What about shopping for food? Going to a movie or dinner with friends? Socially isolating yourself can be devasting, bringing on depression and a worsening of our symptoms.

Those who are living in a facility, even though they are surrounded by other people, may feel totally isolated. Visitors are being discouraged because they could unknowingly have been exposed to the virus and could spread it to the infirm residents there. Several retirement homes have been the sites of the biggest numbers of fatalities in the US from Covid-19.

HOW TO PRACTICE SOCIAL DISTANCING WITHOUT LOSING YOUR CONNECTIONS

For some good tips for how to cope, the Davis Phinney Foundation published a very good blog today on practicing social distancing and avoiding isolation. Bottom line, your computer is now your best friend and will keep you connected to others in these dystopian times. You can read the blog here.

Another good article can be found on Everyday Health today. Explained: How Your Immune System Fights Off Coronavirus (and Other Germs) Doctors explain how your immune system protects you against viruses and other threats — and what you can do right now to help it in the face of threats like the new coronavirus. There is a lot of good information here for you to understand why this virus is moving so fast..

THE STRESS FACTOR

An even bigger problem may be the stress of living through all of this. As you know, stress can make your PD symptoms much worse. We don’t know how long this will last and when we will be able to return to our lives as they were before. It raises so many questions. Will we even be able to return to what we had before? What are we going to face financially? Have you prepared for an emergency situation like this? Don’t be afraid to ask for help and make sure that you have your support system in place.

One way we can all help each other is to set up a means for communication. Go to the Twitchy Woman Facebook Page and start a conversation. Don’t be afraid to ask questions. We will get through this together.

What Keeps Me Motivated While Living with Parkinson’s?

Parkinsonsdisease.net

By Sharon Krischer, published by Parkinsonsdisease.net on February 7, 2020

“You can keep going long after you think you can’t.”
– Heidi Reynolds, Founder Start Living Today PD

I am often asked how I can keep a good attitude and stay motivated while living with Parkinson’s disease (PD) for the past 11+ years.

We know that apathy is one of the many non-motor symptoms of PD, and yes, we are all affected by it at some time. I will be the first to admit that there are many days when I would rather stay at home and do nothing.

Click here to read the rest of the blog

Dear Readers, I occasionally submit blog posts to other sites such as Parkinsonsdisease.net, which published this post several weeks ago. Explore the site and you will find a lot of really good information about living with Parkinson’s Disease.

Sharon Krischer, Twitchy Woman

An open letter to Ozzy Osbourne

January 22, 2020

Dear Ozzy,

Let me be one of the first to welcome you into our exclusive club that no one wants to join. Now that you have come “out” with your diagnosis, there is so much you can do for yourself and for other People with Parkinson’s Disease (PwP’s) .

You took a year off to come to terms with your diagnosis. Understood. Those four words : “You have Parkinson’s Disease” can be devastating. No one wants to hear that. We all go through the stages of grief until we come to terms with the knowledge that life as we knew it has changed. Only then can we move forward. As your wife Sharon (I like that name!) said, it is not a death sentence; there is much you can do to live your life to the fullest with PD.

MAKING THE BEST OF LIFE WITH PD

You are fortunate to be able to look for treatment anywhere. You say you are going to travel to go to a specialist clinic in Switzerland, where experts work on boosting patients’ immune systems before trying additional treatments. All of us would LOVE to hear how that goes.

You said to Sharon that, if that does not work, “I will go anywhere. I will go and see a witch doctor.” Now, I hope that is a joke or hyperbole to express frustration. Every one of us with this disease feels that way to some (and maybe a great) degree. But if you are serious . . .??? A witch doctor? If you want to get out to the edge, to try the experimental, there are much better avenues to take. In the 11 years since I was diagnosed, a lot of progress has been made towards finding a cure, or at least a treatment to slow or halt progression of the disease, and there are clinical trials going on world-wide. The community you have involuntarily joined would be thrilled to learn what you learn in one of those pursuits. But please, not a witch doctor.

THE BASICS

Research has shown that the most effective treatment for PD, better than any medication developed to date, is . . . . . exercise. Those of us who are living well with PD exercise almost daily. Since you live in LA, join us at our boxing class for PwP’s in Santa Monica. Don’t be shy – people with PD are some of the nicest and most inspirational people you will meet.

Keep on singing. Singing helps you maintain your speaking voice, which tends to get quieter with PD. It also helps with swallowing problems that may occur later as the disease progresses. And, God knows, many of us love to hear YOUR music. There are singing groups for PwP’s in LA you can join. I am sure that they would welcome another musician to their group. They even perform around Los Angeles. That may not be quite the same as going on tour with your band, but it could be a good warm-up for you to get back on the road. What a thrill that would be for those in the group!

There is so much more that you can do, but I don’t want to overwhelm you with that now. Good nutrition, finding the right medication for you, and – to repeat – exercise can all help you lead a normal life.

THE PARKIN GENE

Did you know that only a small percentage of people with PD have the Parkin gene? Because you have the gene, it puts you at an advantage over people like me who have idiopathic PD – Parkinson’s of unknown origin. There is a lot of research going on with genetic forms of PD that will not only benefit you, but may help the rest of us without the gene mutation.

USE YOUR FAME

Ozzy, you would be a great spokesperson for all of us with PD. Join Michael J Fox, Alan Alda and others in educating the public about PD and raising money to find a cure. Unfortunately too many celebrities announce they have PD and disappear from sight. Think of the good you can do for yourself and others by speaking publicly on our behalf.

If you can bite the head off a bat while performing on stage in front of thousands of adoring fans, you can battle Parkinson’s and win. I know you have the strength to do something positive with all of this. We have faith in you.

One of your fans and fellow travelers on this journey,

Sharon Krischer, aka Twitchy Woman

Beverly Hills, California

Watch the interview from Good Morning America here

What is happening with Parkinson’s research in 2020?

“Grow every stem cell,
search every gene,
sequence every exosome,
till you cure PD!”

Tom Isaacs, to the tune of Climb Every Mountain, for the World Parkinson’s Congress 2016

Dear Readers,

For the past 4 years I have tried to summarize for you any PD research that I have come across in layman’s terms, so that it is easier for all of us to understand. In my last post, I stated that I was optimistic about finding a cure and disease modifiying treatments in the next couple of years. I just received a blog post from The Science of Parkinson’s about the current clinical trials that blew me away. The road ahead: 2020 reviews much of the clinical research that is focused on disease modification in Parkinson’s. I knew there is a lot going on with research, but had no idea to what extent. So yes, I am still optimistic that the next couple of years will be some major breakthroughs for us.

There is no way I can summarize all of this for you. My head is spinning just from scanning through the entire article. I need to go back and study it more closely. Here is what the author, Simon Stott, the deputy director of Research at the Cure Parkinson’s Trust, says he will be focusing on:

As stated in the intro, I am going to focus primarily on clinical trials of potentially disease modifying experimental therapies in this post, as a broader discussion of ‘all Parkinson’s research in 2020’ is too greater task.

And in keeping with previous years outlooks, I am going to frame this discussion around the idea that:

Any ‘curative therapy’ for Parkinson’s is going to require three core components:

  1. A disease halting mechanism
  2. A neuroprotective agent
  3. Some form of restorative therapy

Now, the bad news is (as far as I am aware) there is no single treatment currently available (or being tested) that can do all three of these things. By this I mean that there is no disease halting mechanism therapy that can also replace lost brain cells. Nor is there a restorative therapy that stop the progression of the condition.

That statement can obviously be read as bad news, but it shouldn’t.

Let me explain:

A curative therapy for Parkinson’s is going to need to be personalised to each individual, with varying levels of each of the three component listed above. It will be a multi-modal approach designed for each individual’s needs.

For the rest of this post click here.

Warning, this will most likely make your eyes glaze over after a few minutes. Don’t plan to read everything at one sitting. It will take you hours to go through it all. Even if you do not understand it all, I think it will give you some hope for the near future. Enjoy.

2020 Vision in 2020

New Year’s Eve, Mr. Twitchy and I went to the LA Kings Hockey game with friends. At many professional sporting events, there are giveaways of mostly useless team memorabilia. Tuesday night, the giveaway was 2020 glasses, which are just plain impossible to put on. However, like everyone else in the arena, we had to take a selfie while wearing them.

Yes, we looked like total fools, the glasses came off immediatelly after the photo, and we had a great time at the game.

So did the glasses give us 2020 vision for the new year? We won’t know until the end of the year, but lets take a look at what we can look forward to.

There are many reasons to be optimistic about the future with Parkinson’s. There is a lot of research going on in many different directions. Here are just a few of the things that popped up in the Parkinson’s news-sites this week:

At the World Parkinson Congress in Portland, in 2016, the late Tom Isaacs, in his keynote address, said that the cure is always at least 5 years away. Based on all of the recent findings, I think that maybe his theory will be proven wrong in the next year or two. In light of that, my vision for the Parkinson’s Community in the coming year is that:

  • A breakthrough is iminent, both for effective treatments that not only make our lives better, but in fact delay the disease.
  • Biomarkers will become standard early predictors of Parkinson’s so that treatment can start earlier.
  • And most important, all of the research mentioned above brings us much closer to a cure – not in 5 years – but in the next 1-2 years.

My personal vision is that I will continue to live well with PD, so that I can keep doing the things that I enjoy, which include:

  • Taking care of myself with exercise, diet and engaging in an active social life.
  • Advocating on behalf of the Parkinson’s Community and helping the newly diagnosed find their way with PD.
  • Most important of all, spending time with Mr. Twitchy, our children and grandchildren, and being thankful for all that we have.

What is your vision for the coming year? For yourself? For Parkinson’s? Please join in the conversation.