Has a real cure been found for Parkinson’s Disease?

You may have seen the news this week about the latest “cure” for Parkinson’s Disease.

“A cure may be on the horizon for Parkinson’s as scientists have found an experimental drug can slow down its progression and stop symptoms.

NLY01 has been called ‘amazingly protective’ as preliminary trials showed it blocked brain cells from dying.”

Researchers at  Johns Hopkins University  are optimistic that the drug NLY01 will go to clinical trials on humans later this year.  The drug, which is similar to those used to treat diabetes, was able to slow Parkinson’s progression and ease symptoms in mouse trials. We have been hearing a lot in the last few years about repurposing diabetes medications for Parkinson’s Disease, so this new drug trial seems to be a logical next step in the development of a drug specifically for PD.

Should you go out and scream from the mountain tops that the cure has been found? Probably not yet.  But this trial gives us reason to be cautiously optimistic.   Researchers are investigating so many different angles to delaying or stopping the disease, that at least one of them may just be what we have been waiting for.Compound Similar to Diabetic Medications Slows Parkinson’s Progression in Mouse Study

Will NLY01 work for everyone with PD, no matter what stage they are in?  That is a question that still needs to be answered with the upcoming clinical trials.  But if this new drug can really stop PD in its tracks for those who have been newly diagnosed, it will be a game changer.   While Parkies have already shown that we can lead productive, healthy and long lives, if NYL01 actually delivers on its potential, it could make that better, easier and who knows, maybe even cheaper.

Fingers crossed (or whatever works for you); we’ll just have to wait and see.

If you are a science geek, you can read about the study here:  “Block of A1 astrocyte conversion by microglia is neuroprotective in models of Parkinson’s disease,” which was published in Nature Medicine.  For the rest of us, click on NLY01 instead, which is written in language that most of us can comprehend.

Is There Anything Good About Living With Parkinson’s? These Women Say Yes!

I’m the fittest I’ve ever been, healthiest, started a coaching business, made new and positive friends, live in the moment, nothing for granted, more time for others. Above all staying positive every day, just so happy to be able to stop and smell the roses.  Jackie P.

Several years ago, on a Thanksgiving blog post, I wrote about things to be thankful for with PD.   Many of the “things to be thankful for” were lighthearted.  But some readers did not get it.  One person responded “how could anything good come from this terrible disease”.  For me, a positive attitude has helped me get through the past 9 years while living with Parkinson’s.

Recently, on a PD Facebook page, someone asked for members of the group to share something positive that they have done, learned or discovered since they were diagnosed with PD.  For many people, it may be difficult to see anything positive about the diagnosis, such as that person I mentioned.  However, the response to her question was amazing.

There were many wonderful, honest answers, some of which I will share with you.  Very few answers were the typical “shake and bake” answers.  The readers dug deep and there were some common threads throughout.

Probably the most important thing is the friendships that have been made because of Parkinson’s.   Having friends who understand your life with PD is priceless.  These are people who understand how you are feeling, without even having to ask.

Coming in a close second is being more aware of what is important in their lives and making changes appropriately.  That may mean spending more time with grandchildren, doing things on their bucket list, setting boundaries and learning to say “no”.

Finally,  quite a few mentioned having more confidence in many ways, to speak up when with friends, at work, in public places.  They are able to challenge themselves and try new things.

I think that having Parkinson’s allows us to see the world differently.  It also gives us the chance to reinvent ourselves, over and over again, as the disease progresses.  Many of us are doing things now that we never would have imagined doing. Why not try that boxing class and see what the buzz is all about?  You have a sudden urge to play an instrument?  Go ahead and do it.  It is good for your brain.  Same for learning a new language.  Learning new skills can help reconnect some of the neural pathways in your brain that have been damaged by PD.  The most interesting thing to me is that so many of us have found new interests, often showing creativity in the arts where there was none before.  Is it the added dopamine that we are taking? Or the lack of dopamine?

Because many of us are no longer working, we now have more time to do those things we have always wanted to do.  Mr. Twitchy and I have been traveling a lot, mostly because we have the time, but more importantly, a future with PD is so uncertain that we want to get in as much adventure as we can now, while we can enjoy it to the fullest.

So here are some of the answers in response to the question.  Do you see yourself in any of these?  Can you think of other good things that have happened because you have Parkinson’s?

  • I have met so many wonderful people, challenged myself and achieved things I would never have done before, I enjoy and appreciate the little things in life so much more, I live in the moment and know that life can still be good! 😀
  • I would say it’s a wake-up call and forces one to face facts about their life and take stock. Time to make changes and let go of some things and nurture others. Also since exercise is the one real medicine that can change the course of this, a lot of the future is in our control. Get moving! 🚴‍♀️
  • Appreciate each second and reaching out to Face Book friends; priceless
  • I no longer moan about emptying the dishwasher; just appreciate the fact that I still can.
  • I know I’ve become more empathetic, sympathetic, more caring, more appreciative, more loving, to name a few. You don’t get it, until you get it!
  • I have become more patient with other people and have been grateful when they are patient with me. I started a support group and joined Rock Steady boxing🥊 and through those two groups have developed deep friendships and gotten to know people that I can’t imagine my life without. I also found out what a caring man my husband is. I am also learning to depend more on God.
  • For myself I go to the Delay the Disease exercise class and have met 6 wonderful ladies and we stay after class and talk about everything good or bad in our lives. We also go out to lunch and a movie every 2 weeks. I feel so much better about my life since going to this class.
  •  We don’t get as many wrinkles since we don’t have all the facial movements and  if someone makes you mad, you can spill something on them and just blame it on your Parkinson’s..LOL!!
  • I am a retired RN. Trust me loss of sense of smell can be a blessing in a hospital setting. Not a blessing when baking brownies.
  • It has pushed me to not be so shy in talking in front of others as 4 years ago I started a PD support group in our Community as there was none And so I thought, Yes I can try this! So glad I did! Also My art has become a real blessing!
  • Learned be in the now and to get the most out of every experience.
  • I’ve learned to set boundaries with people in my life, not take on too much, take care of myself so that I can be the best mom and wife I can be. I’ve also learned to love myself more and honor where I am every day. And I don’t sweat the small stuff anymore!
  • I have learned to FINALLY and unequivocally stop putting up with other people’s BS, no matter who they are, even if it means banning them from my life. Ain’t nobody got time for that crap!!  😀
  • Learned not to take anything for granted..be confident and for the first time in my life love myself instead of not liking myself.
  •  I created a cartoon to deal with this journey or situation. I’m striving to be a positive deviant. Hope to share some of the cartoons.
  • Finally getting the proper diagnosis was such a relief for me and my husband. I started to think I was crazy. It also reminds me to make as many happy memories with my family, while I can.
  • It has shown me that I am a fighter. Stronger than I thought. I figured I can curl up in a ball and check out of life, or stand up and fight it. I’ve put my energy into now helping other veterans with illnesses that also developed post combat deployment. For me, it’s a healthy way to redirect my anger at the disease and the military and turn it into a positive. But don’t get me wrong, I still have crappy days…just a bit fewer😊  
  • Telling my story and the complete reinvention of myself!
    Image may contain: Allie Toepperwein, smiling
    Allie Toepperwein

    Speaking up for myself and not to sweat the little things. Allie T. – see photo

  • I’ve learned not to put off tomorrow, what I can do today! Traveling and making memories with my family and friends. Learning not to worry about tomorrow, just take care of today. Strength doesn’t just happen, you choose it!! You ladies are proof! ❤️
  • First, all the wonderful people I met at the World Parkinson Congress in Portland in 2016 as well as those in my local support group. Secondly, creating a new life in retirement as I will launch a PD website and blog this summer.
  •  Learned to text with my left hand! 😀
  •  Oops, forgot! Became an athlete (astonishing to this couch potato)😀   ⛹🏻‍♀️ 
  • Having everyone tell me I am an inspiration to them. Before I was diagnosed I was average and now I’m a warrior. It’s a strange feeling but it fuels my fire. I am stronger than I ever realized.   
  •  Where do I start? 6 years of living and doing so many things I would not have done. I’m the fittest I’ve ever been, healthiest, started a coaching business, become part of several charity fund raisers, made new and positive friends, live in the moment, nothing for granted, more time for others. Above all staying positive every day, just so happy to be able to stop and smell the roses. 🌹🌹🌹
  • I’ve learnt how to do radio shows from my home and that has lead to doing a community radio training course and now I have a co-announcer spot on the oldest grooviest avant- guard community fm station in Australia.
    https://www.mixcloud.com/…/radioshow-dj-madonna-from…/

What’s Your Parkinson’s IQ?

You have just been diagnosed.  Or you have been living with PD for 20 years.  How much do you really know about Parkinson’s?  What is your Parkinson’s IQ?  Take this test and find out:

  1.  MDS stands for  a) multiple doctors who treat your Parkinson’s  b) Movement Disorders Specialist c) My Dog Spot
  2.  Dyskinesia is a) Strange, jerky movements b) You can’t remember song titles c) Bad dancing at the Disco
  3.  A DaTSCaN is what?  a)  a CT scan for Dogs  b) a brain scan that helps diagnose Parkinson’s  c) I have no idea
  4. What are internal tremors ?  a) shaking in your house  b) small tremors before an earthquake  c) the feeling that you are shaking inside your body
  5. Dystonia is  a) uncontrollable and intense muscle spasms  b) bad sounding music  c)you are tone deaf and cannot carry a tune
  6.  Parkinson’s can be caused by  a) pesticides  b) genetic mutations  c) traumatic brain injury d) sometimes we just don’t know  e) microbes in your gut f) all of the above
  7. Everyone with Parkinsons has visible tremors. a) true b) false
  8. Women account for what percentage of people with Parkinson’s? a) 10% b) 35%. c)50% d)75%
  9. The average age of onset for Parkinsons is a) 40 b) 50 c) 60 d) 70
  10. Research has shown that Exercise is one of the best things you can do to live well with Parkinsons. Which of the following exercises are recommended? A) running b) swimming c) yoga. d) boxing. e) dancing f)cycling g) tai chi h) all of the above I) none of the above
Correct answers: 1 b,  2 a, 3 b, 4 c, 5 a,  6 f,  7  b,  8 b,  9 c, 10 h

How did you do?

0-5 You need to read to the end of this post and then take a look at some of my favorite websites and books about PD

6-8 Almost an expert, a little more studying and you will be a……PreviewInstanceData.jpg

9-10 PD Superstar! You can write this for me

The Answers:

  1.  MDS stands for Movement Disorders Specialist, a neurologist who has received extra training in Parkinson’s Disease and other movement disorders.  If you are currently seeing a neurologist, you may want to consult with a MDS  occasionally to make sure you are getting the right information and treatment.
  2. Dyskinesias are involuntary, erratic, writhing movements of the face, arms, legs or trunk. They are often fluid and dance-like, but they may also cause rapid jerking or slow and extended muscle spasms. They are not a symptom of Parkinson’s itself. Rather, they are a complication from some Parkinson’s medications. (Parkinson’s Foundation website)
  3. DaTSCAN™ is a specialized imaging technique that allows doctors to capture detailed pictures of the dopamine neurons in your brain. This technique involves the use of a radiopharmaceutical agent (a chemical compound containing an isotope, or radioactive element). The radiopharmaceutical agent is injected into a vein and taken up by the brain’s dopamine cells. The cells can then be detected through SPECT (single photon emission computed tomography) scanning. In this way it is possible to determine whether there is a reduction in dopamine cells, which usually occurs in the presence of Parkinson’s disease. (Michael J Fox Foundation)
  4. Internal tremors seem to be a well kept secret among People with Parkinson’s.Internal tremors are shaking sensations felt inside the body. They occur without visible movement, which external tremors produce.   A person may experience internal tremors in the trunk, arms, legs, or internal organs.
  5. Dystonia is a sustained or repetitive muscle twisting, spasm or cramp that can occur at different times of day and in different stages of Parkinson’s disease (PD). People with PD most commonly complain of a painful dystonia of the foot on their more severely affected side. (Parkinsons Foundation)
  6. Most people have Idiopathic PD, meaning there is no known cause.  A small percentage have a genetic mutation (LRRK2, PINK1 or GBA), traumatic brain injury or pesticide exposure as their cause.  Finally, the latest research shows there may be a connection between microbes in your gut and PD.
  7. Most people with PD do not have visible tremors at the beginning  They may have stiffness, Dystonia or other symptoms that are not readily visible.  Some people with visible tremors do NOT have Parkinson’s.  They may have Essential Tremor or some other type of tremor.
  8. Men are diagnosed more than women by a margin of about 2:1.  However, it often takes women much longer to get a diagnosis, especially if pre-menopausal. (more on that in a future post)
  9. The average age for onset is 60. Although aging increases the odds of having PD, we are not all old.  Persons diagnosed under 50 are considered young onset or YOPD.  Michael J Fox is a prime example of someone diagnosed at a young age.
  10. Exercise in any way, shape or form is recommended, as long as you do not do something that will cause injury.  Start slow if you have been inactive for a long time, either with a physical therapist or personal trainer.  The more intense exercise you do, the better, showing longer lasting effects.  Walking the dog, briskly, PD Dance classes, PD Boxing classes, yoga classes are just a few suggestions.  Find something you like so that you will continue to do it.  Just do something everyday.  You will feel better, get out of the house, and maybe even find a support group among your peers.

The bottom line is, to live well with Parkinson’s, you need to do some homework.  Get out and exercise, meet other people with Parkinson’s who you are comfortable talking to, read about Parkinson’s (but not too much).  There are a lot of resources available to you. Most importantly, know that you are not in this alone.   There is a large community of people with PD whom you can connect with in support groups, exercise classes or on-line.  With their help, you too, can become a PD Superstar!

An American Ninja PD Warrior

 

Once I restarted my swing and made my final reach, I knew all I had to do was make that last swing. This is when Mr. PD showed up though.   Jimmy Choi

I am not a fan of Reality TV.  The closest I came was when my daughter was designing clothes and we watched Project Runway together for several years.  At some point, we both became bored with it and stopped watching.  Every season, every episode followed the same formula.  I have watched Top Chef a few times, mostly on airplanes when there is nothing else of interest, and guess what, it followed the same exact formula, just substituting chefs for fashion designers.   Nothing original in these shows.   Is there a difference between “The Voice” and “America’s Got Talent”?  I could not tell you, except that Simon Cowell seems to be everywhere.

Tonite, I watched American Ninja Warrior (ANW) for the first time because of Jimmy Choi.  If not for him, I probably would have avoided it completely.  I am sure that so many others with Parkinson’s watched for the first time, too.  Jimmy Choi’s second appearance on ANW was a reason for us to come together and celebrate.Image may contain: 1 person, outdoor

So who is Jimmy Choi?  An inspiring father of two who was diagnosed with Parkinson’s Disease at age 27.  One day he came across a magazine article about a person with PD who was running a marathon.  That article motivated Jimmy, who by that time had gained significant weight and was walking with a cane, to run a 5K race.  Then a 10K race, 1/2 marathon and eventually full marathons.  It literally changed his life.  He lost weight and his PD symptoms became less severe.  Jimmy became an inspiring model of the positive benefits of exercise for a person with PD.  All of this led him to become a spokesperson for the Michael J Fox Foundation.

Tonight, he is appearing for the second time on American Ninja Warrior in an effort to spotlight the need for a cure for Parkinson’s.  Last season he made it to the regional trials in Kansas City, but fell in the middle of the course and could not complete it.  Jimmy was a fan favorite, and was brought back by ANW to try again this year.

We watched, cheering him on through the first two obstacles, watching his tremor become more visible as he became more stressed by the tasks at hand.  At the end of the third obstacle, it became clear that his tremor and weakend grasp were going to win this time.  As he said “Once I restarted my swing and made my final reach, I knew all I had to do was make that last swing. This is when Mr. PD showed up though.”  Jimmy fell into the water as he tried so hard to reach that last ring.  We felt like we were falling into the water with him.

The thing that most impressed me was how hard Jimmy worked, inspite of having PD, to get to this point.  He had a mission – to stop making excuses and take control of his life when things were not going well.  As he reached eached milestone, 5k, 10k, etc, he set new goals.  He was not content with staying in one place.  He had to keep working harder and harder, eventually becoming our American Ninja PD Warrior.

Jimmy did not fail last night.   He inspired so many others watching him to get moving, to improve their lives while living with Parkinson’s.  And for that, we thank you Jimmy.

 

 

The California Parkinson’s Disease Registry and other things

First, I want to thank all of you who expressed concern after my blog post last week.  It was a very stressful week which definitely had an effect on how I felt.  I saw my Movement Disorders Specialist on Thursday and she assured me that downloadI am doing ok, I just need to get more sleep and reduce my stress levels.  She suggested meditation, which I have tried before, but never seemed to get into it.  I will try again and hopefully will be more successful.

The California Parkinson’s Disease Registry

Beginning July 1, 2018, a new California Parkinson’s Disease Registry (CPDR) will be implemented.   The California Health and Safety Code (HSC) 103860-103870 requires healthcare providers diagnosing or providing treatment to Parkinson’s disease patients to report each case of Parkinson’s disease to California Department of Public Health.   It will be a statewide population-based registry that will be used to measure the incidence and prevalence of Parkinson’s disease.

From the CPDR website:  “Surprisingly, little is known about how Parkinson’s disease is distributed among different population groups and whether the patterns of disease are changing over time.  California’s large and diverse population makes it ideal for providing important information about this disease.  CPDR will expand our understanding of Parkinson’s disease to ultimately improve the lives of those affected.”

Why do we need Parkinson’s Registries?

When a large population of people have a disease like Parkinson’s disease (PD), it’s essential to have accurate numbers of how many people have the disease, where they live and why they have it. According to the Parkinson’s Foundation, this information helps researchers, healthcare professionals and even legislators determine how many resources should be allocated to addressing and treating a disease  Currently, the National Institute of Health (NIH) has no firm numbers for the incidence of PD in the United States, which has been estimated to be about 500,000- 600,000.  The last major PD prevalence study was completed 40 years ago in 1978.  Because the risk for PD rises with age, the number of people with Parkinson’s is expected to increase dramatically as the Baby Boomer population ages,  The Parkinson’s Foundation Prevalence Project estimates that 930,000 people in the United States will be living with PD by the year 2020. This number is predicted to rise to 1.2 million by 2030.

What the Registry does NOT do:

  • Disclose individual patient information
  • Report you to the DMV
  • Jeopardize your current or future medical care

A quick search on the internet showed that only a few other states currently have Parkinson’s Disease Registries, including Nebraska, Utah and Washington.   More states need to create PD Registries soon, so that they can plan for the increase in services and resources needed for treating PD as the population ages.  If your state does not have a registry, contact the Michael J Fox Foundation or the Parkinson’s Foundation to find out about lobbying your state legislators to create one.

Screen Shot 2018-05-23 at 10.32.50 PM

There are a growing number of best Parkinson’s Diseases blog lists popping up on the internet.  The latest one is  from Everyday Health, an online Health magazine.  The list consists of 10 blogs that they call “truthful and inspiring.”  I am proud to be one of the ten and congratulate the other bloggers chosen.   There are many very good blogs out there, so if your favorite is not on this list, it may be on another.