Tough Mudder

The Tough Mudder is a hardcore obstacle course designed to test your strength, stamina and mental grit.  There are even electric shocks along the way to keep you motivated?! The course emphasizes teamwork and camaraderie, but its more about completing the course and pushing your limits, than it is about speed.

Caregiving is my Tough Mudder. It's a long race I'm on, and just when I'm feeling pretty good about it and think I have got it under control, I hit another obstacle (an electric shock if you will). There is nothing consistent or expected with Parkinson's. It's a constant rehearsal of things you hope will continue but pray won't. There is no training for this job. Even those who have run this race before you, have run a completely different race with different obstacles and different outcomes. So, we muddle through the mudder as best we can.

We have been on this journey for more than 27 years now, and in some ways, it isn't any easier now than it was several years ago, in fact, it's a lot harder in many ways. The key is to keep being persistent and not give up or give in.

Lately, I've been feeling discouraged and worn out--certainly a human response for a journey like this one. But I've decided I need to look at all the great blessings we have instead of wallowing (as much as I'd like to wallow--I get more sympathy😏). And we DO have an enormous number of blessings! It could be so much worse. All I need to do is look around at my fellow seniors in our Independent Living Community, to see how much worse it can be. Yes, our lives are challenging. But would I want to trade places with someone else? ABSOLUTELY NOT. 

I believe God knows what we can handle, and he gives us just enough grace for the day to take care of it. Isn't that amazing?

As the PD Dementia gets worse and the body no longer cooperates (his or mine) 😉, I'm trying to remember all of the positive things that we have and all we've learned throughout this process. That really makes the road much more pleasant to live with, and to love with.

So, here we are, almost 3 decades into it. This is one tough mudder, but we'll keep on keeping on and focus on the good things we've been given to take us on to the next part of the course!

We're up for it. Are you?

DAYTIME SLEEPINESS

 

We generally know Parkinson's as a motor-symptom disease. But a significant part of the disease has non-motor symptoms that we should address as well.

One of the common disorders of Parkinson's involves sleep...or lack thereof. And sleep disorders of PD can start well before diagnosis or motor symptoms appear, sometimes even years. 

Sleep disorders can include, but are not limited to, dream-acting-out (REM behavior), sleep apnea, difficulty falling/staying asleep, excessive daytime sleepiness and fatigue in general.  Because PD affects the muscles and movement of every part of the body, sometimes the eyelids will become too heavy to keep open. This is a condition called Blepharospasm, where uncontrollable spasms force the eyelids to close. This sometimes accompanies PD. 

Some of the undesirable sleepiness is due to the fact that your loved one isn't getting good sleep at night. For instance, even though dream-acting-out is a behavior that only occurs during the deepest sleep, the talking and acting out during REM actually causes more fatigue and can actually cancel out the deep sleep your loved one should be getting. 

Changing medications; stopping some, and even changing the time the meds are taken, can make a difference. For example, if you take vitamin D at night, you might start taking it at the beginning of the day instead, as vitamin D is like a shot of sunlight and promotes wakefulness. Your neurologist or GP should be able to help you make wise choices about what might work better for you.

Some other suggestions might include increasing socialization, exercise, mentally stimulating activities, or lifestyle modification. Whatever you and your doctor work out will be the best way to handle the daytime sleepiness for you. 

Just remember, exercise is always the best solution for every Parkinson's symptom!

WHEN A CURE?

One of our dear friends was diagnosed with Parkinson's today. We are heart-broken for him and his wife, but also know this is an encouraging time to be diagnosed because of the tremendous strides they are making in research of the disease.

There are so many cases of Parkinson's in the world today; the disease rarely escapes our inner circles. You probably know, or are related to, at least one person who has been diagnosed with Parkinson's Disease (PD).

Parkinson’s disease (PD) is a brain condition causing movement, mental health, sleep, and pain issues. The prevalence of PD has doubled in the past 25 years, with over 8. 5 million individuals with PD in 2019. Nearly one million people in the U. S. are living with PD, with the number expected to rise to 1. 2 million by 2030. A 2022 Parkinson’s Foundation-backed study revealed that nearly 90, 000 people are diagnosed with PD every year in the U. S., indicating a significant increase in the prevalence of PD over the past 25 years. 

We live in an exciting time for Parkinson's research. There are several options for alleviating symptoms. particularly for recently diagnosed individuals. And there is a great deal of money being thrown into the ring for research. Just a few of the offerings for relief are:

      Stem-cell Therapies (Stem cell matrix may contain a rich mix of naturally occurring biomolecules such as collagen fibers, elastin, hyaluronic acid, proteoglycans, growth factors, cytokines, chemokines, and exosomes, placed in patient body to boost dopamine production, immune production and more).

      DBS (Deep Brain Stimulation, placing electrodes in the brain and running a line to a stimulator in the chest to stimulate movement).

      Medication (Synthetic Dopamine to replace lack of body's production of natural Dopamine).

      Neuroprotective Treatment (Maintaining maximum calcium levels for ultimate Dopamine production).

      Gene Therapy (Gene therapy is a category of treatments that involve introducing DNA into cells in an effort to alter which proteins are created and thereby improve symptoms).

      Clinical Trials (No-patient-cost research trials to find answers to symptom relief or cure).

      Exercise (Exercise routine to produce natural Dopamine in the body).

PD research has progressed enormously in recent years. Scientists are rapidly working to unlock the mysteries of Parkinson’s, and treatments that restore lost function, halt disease progression, and prevent the condition are now realistic goals. Studies funded by the NIH have identified several genetic mutations that make individuals susceptible to Parkinson’s disease and breakthroughs in genetic research make finding new genetic factors easier and more efficient. A number of promising new therapies have been developed and are currently being tested in animals as well as people. As scientists work to learn more about the underlying biology of the disease and the complex interplay between genetic and environmental influences, new biomarkers will be discovered, therapies for relieving PD symptoms will continue to improve, and ultimately the disease may be halted, reversed, or even prevented from occurring at all.

Every person who is touched by this disease, should be hopeful for future breakthroughs. And I am still a believer that prayer continues to be the best option!

https://www.ninds.nih.gov/health-information/disorders/parkinsonsdisease