My Journey To Heal From Parkinson's Disease @thehealingprojectblog - Tumblr Blog

April is Parkinson’s awareness month - Day 9 Wrap-up!

SO, What is this thing called Parkinson’s? Why do we shudder at diseases named after people? Do you wonder what’s going on with some our favorite celebs like Michael J. Fox, Mohammad Ali, Linda Ronstadt, or ‘that’ nerdy Facebook guy with a project? Don’t ‘we’ understand that people have problems of their own?

Of course we do, and we Parkinson’s warriors respect that, and have often borrowed courage from their playbook. It is simply to shine enough light on growing problem so that someone out there with ‘a problem of their own’ might actually recognize themselves, or a loved one. A little awareness changes and saves lives every single day. A little awareness has often humbled this Parkinsonian life.

So, WHAT IS Parkinson’s? What can possibly go wrong with a 3 pound mass between your ears that uses 20% of your body’s energy? A jiggly chunk of gray and white matter that contains as many neural connections as stars in the Milky Way Galaxy? (Yes - for EACH one of us). I mean, isn’t it perfect? In fact, IT just reminded me that if I don’t give IT some rest NOW, IT will hate ITSELF in the morning. Truly amazing.. #TheHealingProject

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April is Parkinson’s awareness month - Day 8 wrap-up!

OK, so it’s April 9, and I’m running a day late on my posts. One thing about PD warriors is we tend to run late. This is because we ignore the fact that we are a bit slower on the move, even if quicker in the mind. With me, it’s always been the case, so I’m not going to hide behind PD on that one!

Speaking of which, us PwP’s (people with Parkinson’s) HATE to hide ‘behind’ PD for anything. For example, I had to be dragged to the local precinct for a handicap parking permit, even though these days I can be seen walking (and running) mile after mile. That’s because at this time last year, I could not trust myself to make it to my car without falling backwards. I sometimes needed a heave and a ho (not that kind of ‘ho’) just to get in. So what is so different?

THAT, my friends, is The Healing Project at work. A nearly constant effort to understand how my brain works WITH my body. Then, despite what ‘they’ say about PD progression, it is very possible to improve PD symptoms so much that people go ‘hmmmmm’. How does that happen? The mad alchemist in me goes MWAHAHAHA! More coming on this..!

In the meantime, Godspeed on overcoming YOUR challenge. Everybody is healing from something.. #TheHealingProject

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April is Parkinson’s Awareness Month - Day 6 wrapup!

Today, with the kids off from school, and my 11 year old daughter home with me, I figured let’s get out of the house for some quality time before the friends start calling - OR - I get caught up in a Netflix documentary. We went to the mall since she had some gift cards from her birthday. Perfect.

We spent half an hour in a Justice store picking out some summer shorts and a top. I got some odd looks from staff since young girls usually go there with their mothers, and lets face it, I look odd. At checkout we present a sale coupon that, it turns out, had expired yesterday. “Sorry, the sale ended yesterday.” I politely request; “But, can you please honor it since we also bought a top that was not on sale?” The checkout girl, and apparently the manager, says; “Sorry, it’s in the [computer] system...can’t do it”. With a simple Thank You, I left the stuff there and walked out with daughter in tow. Baaaah computer system!

We laugh about it over lunch as I give her a short lecture on business. Then, after a sip of her lemonade, I tell her about the evils of sugar and the trans fats in French fries. At Barnes and Noble, I wind up in the cookbook aisle for the first time in my life, while she peruses the volumes in the Harrry Potter collection, which she consumed in only three weeks last Summer. We get home, dinner with the family, a short movie and I tuck her in. I flippantly jump my 175 pound butt onto the foot of her bed and splintered the antique bed frame so bad, I had to relocate her in tears to sleep in the guest room. I tell her that we will look back and laugh at this one day. I am not waiting.. 😉

Sometimes the struggle against Parkinsons yields little victories that are shockingly, curmudgeonly, unceremoniously... normal. They are worth the fight. Amen and good night. #TheHealingProject

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April is Parkinson’s Awareness Month - Day 5 wrapup!

Many of you know that I have been ‘aware’ of Parkinson’s disease since October of 2010. Before then, I was an unsuspecting healthy guy who rode the Earth like a grand ferris wheel, sharing my gifts, taking my lumps, and bouncing babies on my knee. The future is never guaranteed - but it seemed to be. I thought I ate the right stuff, breathed the right air, drank the right water; lived in the right place at right time with the right love. I could almost expect to see grandkids at the very least. (OK, I’m pushing it.. 😉)

Suddenly, with the doctor’s shrug, those expectations were no longer to be expected. All I was told to expect was to expect a succession of symptoms like dementia and a host of other nasty sh*t, while “living well” before succumbing to a “miserable death” only a few years ahead of my peers. Well! well! What a relief! AND what a relief it would be to those who would happily choose my ‘lot’ today over their ‘lot’ tomorrow. So, that’s how I now look at life.. relatively Einsteinian indeed! Supplication trumps expectation. The funny thing is; that’s how I thought I looked at life before.

Many PD warriors take it upon themselves to figure out or find PD therapies and healing modalities. The neurologist’s black bag is remarkably small and limited, though effective in some ways. The internet (a.k.a. Dr. Google) has allowed small groups with an idea to form and run circles around elephantine clinical trials that often take years to resolve into anything. Heck, we figure “why not?”. Afterall, we’ve got no expectations(!). Below is one such website that may be onto something.. #TheHealingProject

https://clinicrowd.info/submit-parkinsons-e1/#

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For People with Parkinson's, there is something very strange about the feedback between our brains/bodies and our immediate environment. The choice of clothes, in particular, can affect symptoms. In this article, I cover why consideration to clothing is an important part of living well with

“Fascinating..” as Mr. Spock would say.

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Day by Day in April; Parkinson’s Awareness Month - Post #30

The Healing Project - Parkinson's Awareness Month-Post#30 Thanks again for your comments and support as I submit my thirtieth and final post in my experiment to post something educational about Parkinson's for each day of April (PD Awareness month).

The experiment was a success! - even though I had to rely on some PD-induced insomnia to finish a few of the posts. In any event, thanks to all who stuck with me, and more importantly learned something about Parkinson's disease. One day, your simple awareness is going to help someone else because you will understand what a battle it is standing up against such a challenge. Or, maybe it will just remind you of your own challenges and how you can be a part of the solution. After all, we are all healing from something. Remember, it IS a world of possibility! See the new video here! http://youtu.be/G4P_vY2A_sc Onward! --------

PS - This thread will soon be available on The Healing Project website. For now, to read previous entries, go to my timeline. See you down the road!

Yes, this is syndicated from April, 2016. I thought it was worth running again.

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Day by Day in April; Parkinson’s Awareness Month - Post #29

The Healing Project - Parkinson's Awareness Month-Post#29 Thanks again for your comments and support as I forge ahead into this twenty ninth day of my experiment to post something educational about Parkinson's for each day of April (PD Awareness month). --------

have read this about Parkinson's disease as written by numerous PD Warriors... "Parkinson's disease is the best worst thing to ever happen to me..." I understand why that is.. 1) It makes you actually listen to the train whistle. 2) It makes you marvel at the absolute awesomeness of the human brain. Its networks make the Internet look like an abacus. 3) It reminds you that your body is like a house of cards, but the deck has 52 trillion cards. 4) It <may> put you on the best diet of your life. 5) It <may> put you in the best physical condition of your life since exercise IS a key to slowing it's progress. 6) It forces you to appreciate and pronounce "mitochondria" and "Catachol-o-methyl transferase".. 7) It humbles you. 8) It gives the line "..it could be worse" new meaning. 9) It makes you look up the word "entropy" only to hear a voice laugh over your left shoulder. 10) It makes you realize that those who share your journey into stumble world must really mean it when they tell you they love you. There are more, but I can't beat the last one at this hour. One more entry to go! Stay tuned, it will be a good one. Onward! --------

PS - For those following this thread, there is no plan or outline. Like a song, I like to go where the muse takes me. To read previous entries, go to my timeline. If you are not already aware of the complexity of PD, you soon will be. If you are aware, please do share what you know. See you tomorrow!

Yes, this is syndicated from April, 2016. I thought it was worth running again.

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Day by Day in April; Parkinson’s Awareness Month - Post #28

The Healing Project - Parkinson's Awareness Month-Post#28 Thanks again for your comments and support as I forge ahead into this twenty eigth day of my experiment to post something educational about Parkinson's for each day of April (PD Awareness month). --------

Parkinson's disease can send your mind in a frenzy. And not always in a bad way. I read somewhere that PD can make you more emotional, and though we always give credit to the heart for this, let's face it.. It is really the brain. And it gave me this moment yesterday. My 9 year old girl Arlana loves gymnastics. She loves to talk about Olympic champion Gaby Douglas. And I love to listen just to see that gleam in her eye - the gleam of having a hero (mine was Arthur Ashe). Anyway, with her on my lap and my iPad within arm's reach, I told her that I remembered the first 10 awarded in women's Olympic gymnastics. In somewhat stunned disbelief that daddy could even know such a thing, I found the video of the 1976 compulsory routine on the uneven bars by Nadia Comeneci. We watched. I blubbered. It was either the moment with my daughter and / or the beauty of the routine and / or the fact that I remembered it. But I cried in a way I don't think I would have prior to having PD. Now, my daughter knows what a softie I really am. Thank you Parkinson's for a precious moment. There is something good in even the worst thing. Onward! --------

PS - For those following this thread, there is no plan or outline. Like a song, I like to go where the muse takes me. To read previous entries, go to my timeline. If you are not already aware of the complexity of PD, you soon will be. If you are aware, please do share what you know. See you tomorrow!

Yes, this is syndicated from April, 2016. I thought it was worth running again.

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Day by Day in April; Parkinson’s Awareness Month - Post #27

The Healing Project - Parkinson's Awareness Month-Post#27 Thanks again for your comments and support as I forge ahead into this twenty seventh day of my experiment to post something educational about Parkinson's for each day of April (PD Awareness month). --------

The Stages of Parkinson's Disease According to WebMD Parkinson's disease strikes people in many different ways, leaving them to experience a broad range of symptoms. Though symptoms may be mild or severe or occur frequently or infrequently, Parkinson's disease appears to have five different stages. The time spent at each stage varies, and the skipping of stages, from stage one to stage three, for example, is not uncommon. Parkinson's disease stages include:

Stage one: During this initial phase of the disease, a person usually experiences mild symptoms, such as tremors or shaking in a limb. During this stage, friends and family can usually detect changes caused by Parkinson's, such as poor posture, loss of balance, and abnormal facial expressions.

Stage two: In the second stage of Parkinson's disease, the person's symptoms are bilateral, affecting both limbs and both sides of the body. The person usually encounters problems walking or maintaining balance, and the inability to complete normal physical tasks becomes more apparent.

Stage three: Stage three symptoms of Parkinson's disease can be rather severe and include the inability to walk straight or to stand. There is a noticeable slowing of physical movements in stage three.

Stage four: This stage of the disease is accompanied by severe symptoms of Parkinson's. Walking may still occur, but it is often limited, and rigidity and bradykinesia -- a slowing of movement -- are often visible. During this stage, most patients are unable to complete day-to-day tasks, and usually cannot live on their own. The tremors or shakiness of the earlier stages of the disease, however, may lessen or become non-existent for unknown reasons during this time.

Stage five: In the last or final stage of Parkinson's disease, the person is usually unable to take care of himself or herself and may not be able to stand or walk. A person at stage five usually requires constant one-on-one nursing care. Onward! --------

PS - For those following this thread, there is no plan or outline. Like a song, I like to go where the muse takes me. To read previous entries, go to my timeline. If you are not already aware of the complexity of PD, you soon will be. If you are aware, please do share what you know. See you tomorrow!

Yes, this is syndicated from April, 2016. I thought it was worth running again.

#Godsnotdead TheHealingProject StillMeInHere

Day by Day in April; Parkinson’s Awareness Month - Post #26

The Healing Project - Parkinson's Awareness Month-Post#26 Thanks again for your comments and support as I forge ahead into this twenty sixth day of my experiment to post something educational about Parkinson's for each day of April (PD Awareness month). --------

For a PD warrior in the ‘earlier’ stages, Parkinson's disease can be difficult to voluntarily disclose to people around them. On one hand, you want to be seen as a normal person going about his or her business. On the other hand, when it takes three minutes to pull out a credit card to pay the cashier while a line of customers waits for you huffing and puffing, you kinda wish they knew. Sometimes, a visible tremor will do the job for you. But without a visible tremor, you also don't want to make a public service announcement over the PA. I have learned to grin and bear it. i have also learned that everybody's got a story. Onward! --------

PS - For those following this thread, there is no plan or outline. Like a song, I like to go where the muse takes me. To read previous entries, go to my timeline. If you are not already aware of the complexity of PD, you soon will be. If you are aware, please do share what you know. See you tomorrow!

Yes, this is syndicated from April, 2016. I thought it was worth running again.

#Godsnotdead TheHealingProject StillMeInHere

Day by Day in April; Parkinson’s Awareness Month - Post #25

The Healing Project - Parkinson's Awareness Month-Post#25 Thanks again for your comments and support as I forge ahead into this twenty fIfth day of my experiment to post something educational about Parkinson's for each day of April (PD Awareness month). --------

Could it be the gut or some kind gut anomaly that causes Parkinson's Disease? The gut has been called the second brain; manufacturing most of the Serotonin neurotransmitter In the body (far more than the brain does!). One theory is that a belly condition called 'Leaky Gut Syndrome' allows minute amounts of undigested food to leak into the bloodstream (along with toxins). This can wreak havoc throughout the body, especially fragile brain cells. It is a plausible theory especially since with GMO foods and so forth. Another PD cause theory regarding the gut is the misfolding of a protein called alpha-synuclein. It tends to form molecular clumps inside neurons that eventually kills them. The theory is that it starts doing its damage in belly neurons, and over years travels up the Vagus nerve to the base of the brain. What makes this theory very interesting is that in a European study involving 15000 patients who had their Vagus nerves surgically severed (in a unrelated-to-PD procedure), hardly any developed Parkinson's! Makes you wonder.. Can you tell I read a lot about this stuff? Onward! --------

PS - For those following this thread, there is no plan or outline. Like a song, I like to go where the muse takes me. To read previous entries, go to my timeline. If you are not already aware of the complexity of PD, you soon will be. If you are aware, please do share what you know. See you tomorrow!

Yes, this is syndicated from April, 2016. I thought it was worth running again.

#Godsnotdead TheHealingProject StillMeInHere

Day by Day in April; Parkinson’s Awareness Month - Post #24

The Healing Project - Parkinson's Awareness Month-Post#24 Thanks again for your comments and support as I forge ahead into this twenty fourth day of my experiment to post something educational about Parkinson's for each day of April (PD Awareness month). --------

It has been a long weekend of fighting Parkinson's in more ways than one. First, it was the PD Unity Walk where I did some songs, followed of course by the walk. Then it was a bike ride today with my daughter Arlana. Exercise is so key to fighting PD, that it should be treated like any pill and done every day. The problem is that PD also hits us in the motivation center - Dopamine depletion means motivational depletion. So, when I am sunk deep into our deep leather couch, I first got to trick myself to want to get off my butt, then I have to invent a new way to get my legs to lift my body up. I realize this might be true anyway for anybody (with a hangover..), but it can be a real project for many Parkinson's Warriors. And, that's not including the actual exercise! My not-so-secret weapons are the ones who call me dad. Thankfully, Love is the ultimate motivational neurotransmitter. Onward! --------

PS - For those following this thread, there is no plan or outline. Like a song, I like to go where the muse takes me. To read previous entries, go to my timeline. If you are not already aware of the complexity of PD, you soon will be. If you are aware, please do share what you know. See you tomorrow!

Yes, this is syndicated from April, 2016. I thought it was worth running again.

#Godsnotdead TheHealingProject StillMeInHere

Day by Day in April; Parkinson’s Awareness Month - Post #23

The Healing Project - Parkinson's Awareness Month-Post#23 Thanks again for your comments and support as I forge ahead into this twenty third day of my experiment to post something educational about Parkinson's for each day of April (PD Awareness month). --------

If there is a good day to be a Parkinson's Warrrior, today was it! Hanging with friends and family, sharing music, walking the Parkinson's unity walk with comrades in arms. I was a bit nervous taking the stage at the bandshell, but the music always settles me down. Plus, having a rock like John Sonntag to lean on is truly a blessing and I owe him a debt of gratitude. While my guitar skills have temporarily waned, he picked up the ball by learning many of my songs so I could still do this. The same goes for my wife and family. It is truly a team effort all the way around. This is why Parkinson's disease will fail. The human spirit always triumphs when it rallies around a common cause. Remember, there are still footprints on the moon. Onward! --------

PS - For those following this thread, there is no plan or outline. Like a song, I like to go where the muse takes me. To read previous entries, go to my timeline. If you are not already aware of the complexity of PD, you soon will be. If you are aware, please do share what you know. See you tomorrow!

Yes, this is syndicated from April, 2016. I thought it was worth running again.

#Godsnotdead TheHealingProject StillMeInHere

Day by Day in April; Parkinson’s Awareness Month - Post #22

The Healing Project - Parkinson's Awareness Month-Post#22 Thanks again for your comments and support as I forge ahead into this twenty second day of my experiment to post something educational about Parkinson's for each day of April (PD Awareness month). --------

This entry will be brief folks - and brevity is not the trademark of a Parkinson's Warrior.. ;-). I gotta be up at 6am to be in Central Park ready for my 9:30am set to kick off the 2016 Parkinson's Unity Walk. I will be doing 3-4 songs with John Sonntag on guitar as part of The Healing Project. Wish us luck! Send me a FB message or text me at 609-577-9434 if you would like to meet up. Parkinson's disease is no walk in the park, but here's a chance to make it one! Onward!

-------- PS - For those following this thread, there is no plan or outline. Like a song, I like to go where the muse takes me. To read previous entries, go to my timeline. If you are not already aware of the complexity of PD, you soon will be. If you are aware, please do share what you know. See you tomorrow!

Yes, this is syndicated from April, 2016. I thought it was worth running again.

#Godsnotdead TheHealingProject StillMeInHere

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