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Don’t Expect Everyone To Understand Parkinson’s-2018!

This was my first blog post 10 years ago–slightly updated!

When I was first diagnosed at the age of 23, I have to admit, the diagnosis of Parkinson’s Disease (PD )came as a relief. What I had convinced myself was a terminally malignant brain tumor was a chronic neurological deficiency of the neurotransmitter, Dopamine–that didn’t sound as bad. Sure, PD can be degenerative and rarely do people with PD get better, over time–but I will say I haven’t changed my medication for several years.  I am lucky and fortunate that my symptoms show a slow progression.

We expect our loved ones, friends, associates, and colleagues to understand our struggle with this difficult ailment. Parkinson’s challenges us all in different ways. Rarely, if ever, do two PD patients share the exact same symptoms. Those who are healthy and untouched by PD are incapable of understanding what it is that we endure with this mysterious and troubling disease. As much as we would like for those who are close to us to understand what it is that we are going through, it just isn’t possible.

Even if we live or work with someone on a daily basis, there is only so much that we are capable of understanding about what it is that they are going through. The best that we can do for any one is to be present, understanding, compassionate, and supportive. Supportive doesn’t mean that you can’t encourage better living and reminding those who you care about to exercise, eat healthier, and to get proper rest.

I’d like to know about your experience with PD. I plan to address issues facing PD patients like doctors, resources, medicines, cooperative medicine, health ideas, what works and doesn’t , Support Groups, PD Conferences, etc.

I hope you find this interesting and helpful.

Thank You!

Karl

AsoftVoice.com celebrates a decade of blogging on Parkinson’s disease!

It is official—this blog, www.Asoftvoice.com, is 10 years old!

With over 300 archived posts pertaining to Parkinson’s disease and living well, it has been a labor of love! Here is to the next 10 years and with luck, a continuation. I hope to hear from more of you, so that I might address topics of interest.

I am happy to report that I don’t have a problem with procrastination—in fact, I’m good at it! Call it a talent, call it a mastery, and to think that I have no training! I am a Master Procrastinator! I admit it—I procrastinate more these days, to stay creative and fluid. I like to work odd hours, sometimes. I write when inspiration calls. So, here are some thoughts to share with you that I hope you can use:

  1. Parkinson’s disease is a strange and quirky illness with a host of awkward and annoying symptoms. I don’t make light of the seriousness of this illness, but if you keep too rigid, you will surely snap. As hard as it may be, hold on to smiling and laughing–as best as you can– it is so important to monitor and maintain a sense of humor. Humor and a positive attitude can go a long way, with any illness! Laughter really is a great medicine!

  2. Parkinson’s disease is a wonderful excuse to break convention— you may find that you enjoy living outside the regular everyday box. It may take time. I’ve had over 30 years to adjust, so forgive me if I make it sound easy. Living with Parkinson’s is anything, but easy.

  3. The fact is that structuring your day and schedule to accommodate your on-times as well as your off-times can make your days far less stress-filled and less dramatic.

  4. The label of Parkinson’s disease covers a broad range of symptoms, some apparent and some unseen by public eyes. No two of us is exactly alike and therefore, our symptoms, medications, progression, and helpful therapies may differ.

  5. If Parkinson’s teaches us anything, it is to slow down the rapid pace of life, look around and enjoy it, to eat slower and savor what we are eating. Parkinson’s is an unusual teacher that forces us to slow down whether we choose to or not. See this new pace as an opportunity.

I don’t know what the next 10 years will bring, but I plan to continue to share and expand my voice through this site, maybe a 3rd or 4th book, and maybe a few surprises (good ones) along the way. I hope that you’ll join me for the ride!

Rock Steady Boxing–It’s so much more than just boxing!

I recently joined a Rock Steady Boxing class! The class and the instructor are wonderful! If you have Parkinson’s disease and haven’t tried the Rock Steady Boxing program, I encourage you to find the nearest program in your area. The camaraderie and encouragement amongst the participants is uplifting and inspiring.

The workout is tough, lively, active, loud, motivating, and rewarding. I hate to admit it, but I am getting older. I’m rediscovering muscles that I have not used for a good while. For an hour and a half, the boxers either move through a series of exercise stations made up of quick thinking and moving games, flexibility or core exercises, many of them borrowed from yoga focusing on balance, strength, posture, and mobility. The program is flourishing, as it should. It’s novel, fresh, and effective! This program does something amazing—it makes working out fun again, for me.

Rock Steady Boxing NOVA has been an experience that I did not expect! The whole class has bonded and become a unified group. Everyone supports the other and encourages their fellow boxers. Our coach and leader, Alec, is a charismatic and inspired young man who really strives to make improvements in our class’s lives. 

My first two classes, the workouts kicked my butt! I am happy to say that I can see an improvement in my strength, balance, and overall fitness. Rock Steady Boxing is a welcomed break in my day and week. I see the boxing as a moving meditation. It is a break that I look forward to, as well as seeing my boxing friends and putting on the gloves. I think this program builds your confidence as much as your body. Rock Steady Boxing is like a fast-paced support group that makes you sweat.

If you are looking for an opportunity to get a great workout, build some muscle, make some new friends, and pound some punching-bags, then I encourage you to try Rock Steady Boxing in your area to see if it’s right for you! 

Building a Plan for Your Parkinson’s Disease and Your Health

Without some sort of plan or framework, it is very easy to get lost along the way. Whether you have Parkinson’s disease or not, just having goals may not be enough, as unexpected obstacles can arise at the most inconvenient of times. There is so much in our lives that we can’t expect, but must just accept and move on, as best we can.  Our perspective and flexibility can impact how we deal with adversity.

The following few tips are some thoughts and suggestions that you may want to consider. I hope that these tips might trigger some revelations for you.

  1. Consider building a series of plans from your personal medical team, your support network, your health team (trainer, physical therapist, massage therapist, speech pathologist, etc.). Some of these networks may overlap and vary as your providers may change over time.

  2. Keeping current on developments and timely releases about your illness is not only empowering but beneficial to both you and those who you choose to enlighten.

  3. If you have early onset Parkinson’s disease, I strongly suggest for you to consider finding a Neurologist who is a Movement Disorder Specialist, as they have special training dedicated to this illness.

  4. Don’t compare or contrast your Parkinson’s to anyone else’s. We each have our own flavor of Parkinson’s and we each have our own unique journey.

  5. Timing our medications is a crucial component to making the most of our day. Maintaining and strictly adhering to a timely regimen where your medications can work at their best, takes experimentation and some trial and error.

  6. Try not thinking of illness of any kind as a war, a battle, or a win or loss. Consider illness as an obstacle or an obstruction that must be worked around. No one wins a war. War is dark and violent. Maybe, a new perspective towards illness can take some of the anxiety out of it.

  7. Explore the numerous therapies outside of western medicine to see if you can find one that offers benefit or relief. Get good referrals from friends and family.

  8. Keep an open mind to relinquishing some of the responsibility for the good of lowering your stress level and improving your mental health.

  9. Do what you can, while you can! Whether you are healthy or have illness in your life, consider that our control is limited.

  10. While there is definitive change in our lives and the options may vary or seem more limited, we must recognize that we have more strength and control than we realize.

Nature on Netflix To Wake To, Sleep To, and Enjoy

Bring a bit of peace and beauty into your home! If you are a nature lover and need a calming force that mesmerizes, might I suggest you turn on the captivating vistas of NatureVision TV now on Netflix. Season 3 unveils about 10 hours and 10 episodes of natural world diversity from ocean to jungle.
Whether you meditate with the video and soothing music softly playing in the background or choose to mute the sound just to appreciate the awe of the bounty of creatures and places, this video collection would be great for parties and get togethers. Try using this marvelous collection just as TV art, instead of your TV just being a blank canvas.
If you are a Netflix subscriber and want something unique and attractive to play throughout the day, like moving art, or just want peaceful television to wake and go to bed to, consider this wonderful collection of our planet’s gifts.
I will report more, soon, on other Netflix finds, both nature-related, and not, very soon.

The Magic in Magic!

The Magic isn’t gone, but it is fading fast. The art of magic will never die, but it may become blurred, as new technology replaces the beauty and purity of performance magic. Live magic is just that—it’s magical. When performed correctly and the magician has done his job, the participant feels that the impossible is, possible. Some magicians embarrass or make their audience feel stupidly duped. The magician is meant to impress but not to break the bond between audience and performer. Magic is for everyone: young or old, there is a place to appreciate the grace and fluidity of sleight-of-hand. One should appreciate the trickery of the eyes and misdirection. Cleverness is worth recognition!

The sad reality is that the neighborhood magic store has rapidly gone away for good, only to be replaced by the video game. This dying art has a long history, reaching back to ancient Egypt and possibly even longer. To lose the joy that this art has sprung on so many, and for so long truly is a tragedy, indeed.

I hope that as generations and technology continue to evolve, that the creative minds of those drawn to magic can continue to update and improve upon the wonders of magic. Magic can be reinvented and re-introduced to new audiences in novel ways as materials and new innovations appear.

Keep the Magic Alive!

I have written about the benefit of video games and Parkinson’s disease, but had a deficit of articles on the benefits of performing and practicing magic. I think that aside of the many years of enjoyment of entertaining myself and an occasional audience, magic has given me numerous gifts that I will quantify:

-Magic makes you think in order and organized linear steps.

-Magic forces the performer to communicate, socialize, and be more outgoing.

-Magic helps improve eye-hand coordination and joint flexibility.

-Magic is universal. Magic is entertaining. Magic is sheer fun.

-Magic doesn’t feel like therapy, but maybe it is!

Walt Disney is quoted to have said, “It is fun to do the impossible!” Magic is about making the impossible, possible, even if it’s just for a moment.

 

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Snow Bell

Enjoy!

First Day of Winter–Oh Snow–Ho Ho!

Winter is cold and Winter is icy,

The days are dark and the roads are dicey,

Snow can be pretty when it is new,

As it gets older it looks like burnt stew,

As I get older, the cold gets less tempting,

From occasions galore, I find myself exempting,

Okay, I admit my blood is quite thin,

Blame it on age, it isn’t a sin,

Ice and sleet, I really don’t like,

It probably goes back to being a tyke,

Starting today, I’ll stay inside,

I’ll sit by the fire with cocoa and hide.

 

 

 

My Holiday Card!

My card to you for these holidays,

Is one of appreciation, in so many ways,

My focus is Parkinson’s but I’ll try to write more,

My goal is to share insight and options to explore,

As the holidays near and you may take on more stress,

Be kind to yourself, and worry less on the mess,

Enjoy your family and your treasured friends,

Keep the spirit, long after the season ends,

Thank you for reading and joining my site,

To all of you readers, I wish you a goodnight!

Thank You!

Giving Shouldn’t Be Painful

This morning I received one of those nuisance solicitations from a charity that I had never heard of and still can’t even remember. The caller was clever enough to use a phony id tag of someone we had previously called earlier in the morning. What a devious ploy!

The first thing she said was nearly the most insulting! “Is this Angela?” To which, I replied “Does this sound like, Angela?” I am a 51-year-old male, who sounds nothing remotely close to that of my lovely wife. Either she wasn’t listening, or didn’t care. Not a good start to getting my confidence!

The lady (loosely used) on the call was what I believe to be a sophisticated robocall. The charity organization claimed to be a breast cancer charity (breast cancer was instrumental in my mother’s death) which is a cause near and dear to me.

The female voice on the other end adamantly requested for me to agree to pledge some random amount. Going from high to lower but never addressing my reservations, I was growing more and more angry with the handling of this call.

I asked the voice, “Just how much the charity took and how much went to breast cancer research?”: Her response was disappointing:

“That’s a good question! Fifteen percent goes to research and eighty-five percent goes to administrative costs. Can I put you down for twenty-five dollars?” I couldn’t believe that she thought that I could have been so gullible to say anything near of affirmative! Thus, ended the call!

This is the time of year that charities bombard us with end of year requests. Be empowered, be informed, and don’t be shy to ask what that charity is doing with your hard-earned money. Unless you have a long-established relationship and are familiar with the charity or charities of choice, don’t be afraid to ask the hard questions. You have every right to ask where your money goes and how it is to be used. You also have a right to answers that satisfy your curiosity.

Here are some suggested questions for the charity fundraiser:

  • Are you a registered 501c3 not-for profit?

  • Are you on www.charitynavigator.org?

  • How much of my donation goes toward the cause and not administrative costs?

  • Do you work for the charity or are you a paid solicitor? If so, you might tell them, “I will save the charity money and make my donation directly—but thanks for reminding me”.

  • Do not feel pressured that this call is your one and only opportunity to contribute to the cause. If a charity is pressing you for a donation, take another look at the charity and do some background work.

It is easy to be lured into a convincing charity charade that sounds honest and true to purpose. If you want to know what kind of research was funded by the charity, then ask them. They should be proud of their work, not secretive! If you need time for research and to get answers, there is no reason why you can’t ask them to call you back later.

You are in the driver’s seat to your charitable giving. Don’t feel pushed and pressured by paid solicitors! You should feel confident and enthusiastic about the charities to which you give. The best way to be confident about your charitable giving is to know who, what, where, and how your donation will be used. Don’t be afraid to make a difference, just do your homework to make sure you are educated and satisfied with where your donation is going.

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