Trite but True: Despite my best efforts... - Parkinson's Movement

Parkinson's Movement
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Trite but True

jimcaster
jimcaster

Despite my best efforts, fighting Parkinson's Disease depresses me sometimes, but then I think of three indisputable facts:

1. There has never been a better time in human history to have this disease.

2. With each passing day, we are one day closer to a cure or cures.

3. Because of dietary and exercise changes, I am in better health today than on the day I was diagnosed.

It's a heck of a wake up call, but I'm fully awake, fully engaged, and fully committed to being a genuinely positive person. This website and all of you are a Godsend.

Sending good thoughts from small town Wisconsin, USA,

Jim

35 Replies
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Hey jimcaster. Your comments need to be be balanced. Since some who might provide balance are not contributing right now, I will try to balance what you said. I AGREE TOTALLY WITH YOU.

I forgot to tell you that parkinsons has affected my balance a little. I hope I did not do wrong.

The bright side is that we can rest assured that we will only get better, never get worse. The downside is that for now it still sucks! Cheers mate!

I sure hope you are right, bassofspades. I swear I think about this every minute of every day. I think I'm still in shock, but I'm trying to stay positive. If I get no worse than I already am, I have absolutely nothing to complain or worry about. Time will tell. For now, we just need to live in the moment and be positive. Thank you for being one of the many positive people on here.

Kwinholt
Kwinholt
in reply to jimcaster

We all have our moments . I too am in general a positive person but Parkinson’s sucks! I am thankful everyday for getting up and doing my runs with the help of meds but I had to give myself permission to grieve the loss of the person I was and the things that don’t come easily for me anymore . I have to admit I get scared sometimes letting my mind think of what may be in front of me in the future. The only for sure thing I know is , I don’t know what’s next but will keep pushing myself along and doing my best to never give up. I’m thankful for all of you that understand . 😊

GioCas
GioCas
in reply to Kwinholt

I understand. You are not the sick body whatever happens to you then you will recover.

PS However thiamina has worked well for me and I've been using it for three years without beside effects.

Just think how impossible it would be for Dr. Costantini to spread his message before the internet was invented. B-I (Before the Internet) getting better was almost imposssible. Oh my goodness. Do you see what I see? We need some creative minds to help write a phrase that makes use of the B-I and the B-1. Something like this:

B-I big companies told doctors what to give.

With B-, 1 we can choose how to live.

I told you we needed some creative input. I think it would be very enjoyable if we, the pioneers of change, can make a repeatable phrase that is kind of catchy but makes a statement. OK, it is now your turn.

You are more creative than I am. My hope is that this will prove true:

Parkinson's: With B-1, it's done!

The optimist in me wants to believe it. 😊 The lawyer in me still dwells on the worst possible result. 🙄 The realist in me accepts that the truth is probably somewhere in the middle. 😏

GioCas
GioCas
in reply to jimcaster

hi Jim,

The futurist who is in me thinks that if the b1 slows down the decline, with an improvement of the Ldopa medication in the near future I could have a life from almost normal to normal. And as my pharmacist often says "There are those who are worse ...very worse". Gio

I like it. It is very simple. It will be hard to beat but with this creative group I am looking forward to what is to come.

Maybe it can become Dr. Costantini's slogan. The challenge is out. Post your ideas here.

Hidden
Hidden
in reply to Don_oregon_duck

As BC is to AD so BI is to AI

Don_oregon_duck
Don_oregon_duck
in reply to Hidden

Very high tech . But it definitely shows the comparison between the old way and the new.

Jim, we're right here with you! Just put your trust in our patron saint, Dr Costantini, and rest assured we're going to be ok!

Thanks Jimcaster you've made me feel better.☺ I've been feeling sorry for myself for a day or so.

jimcaster
jimcaster
in reply to SFLR

Ditto. It is SO good to commiserate with others but also good to pause and count our blessings. Many other diseases are much worse and I refuse to accept that we can't slow or even stop the progression. Exercise and diet are two positive factors within my control.

>" Because of dietary and exercise changes, I am in better health today than on the day I was diagnosed. "

True here as well. Keep the faith.

Grumpy77
Grumpy77
in reply to park_bear

How long ago were you diagnosed?

park_bear
park_bear
in reply to Grumpy77

3.5 years. Symptoms from long before.

By coincidence today happened to be one of my gloommiest days for some time .

A couple of days ago I started watching Muhammed Ali videos on YouTube starting from the 60s. Fights and interviews. And as I was watching the 1971, 74, 81, 91 talk show interviews and the Olympic touches. I saw a gradual decline of a very strong healthy charismatic jovial funny man to a very stiff shaky man barely able to speak

It just made me sad and feel gloomy. Then I started feeling very stressful, my tremors increased massively and I'm feeling very depressed and maybe a touch suicidal

APOLOGIES FOR SPOILING THE MOOD FRIENDS

WITH HINDSIGHT IT WAS A BAD IDEA TO WATCH THE ALI VIDEOS

I WAS LOOKING FOR INSPIRATION BUT I GOT THE OPPOSITE

jimcaster
jimcaster
in reply to Grumpy77

I hope this forum and the support of others helps you through the bad times, Grumpy. At least two of my truths might hopefully be of some comfort. That was my hope anyway. We are closer to a cure today than yesterday. It sucks, BUT its better to be dealing with PD now than in the Ali era. Regardless of when we were diagnosed, we are all in this together. I hope your day improves, my friend.

Grumpy77
Grumpy77
in reply to jimcaster

Thank you!

Jim,

This topic is very engaging. Thanks for taking the lead. Easley wrote, it seemed from his observation of the comments, those who try alternatives in addition to or replacing the main stream meds, seem to have some more good days than those who don't try any alternatives. For me that is true. I have more good days by trying alternatives. In fact I have been thinking about my experience and created a new phrase that I now use. It is…., (YOU CAN LEAVE THE VOLUME UP BECAUSE IT IS FOR ANYONE TO HEAR.)

ONE GOOD DAY IS BETTER THAN ONE BAD DAY.

Placebo or no Placebo who cares? From my view, I always wonder if those who want to discredit a treatment without trying it, aren't, instead, throwing out roadblocks that they can point to, and hide their fear of trying something new. They may not wish to be uncomfortable that change always brings.

I am guessing many of the B-1ers have tried at least 5 other alternatives before B-1. Each time you might have been rewarded with at least one good day more than you would have had without trying the new treatment. Placebo? Who gives a... er let me say, who cares? Can I repeat my motto for you? ONE GOOD DAY IS BETTER THAN ONE BAD DAY.

If one wants to examine this a little deeper, I will bet that, generally, the people who try the new alternatives are the same people who create opportunities in the rest of their life. They are the problem solvers of the world. They create businesses, invent things and are comfortable being uncomfortable. I call these people the problem solvers. They do have one huge problem for society to deal with, they don't like to follow the rules. It is amazing, though, how many will follow the lead of a problem solver going places they would never gone alone.

Problem solvers of this community we must unite. There are those who want someone else to be in the lead. If not for us they would miss this life changing opportunity. They need us. Just think about this for a, moment. We are, possibly, at the crossroads of life. What we do here today will have a positive effect on this world 100 years from now. Let's face it. What other events are you putting on your 100 year calendar. If you tell me that you won't be alive 100 years, so what is the point? I would answer, "Don't be ridiculous, this is not about you, it is about, what can you leave behind that is so significant that 100 years from now, someone, somewhere who doesn't even know your name has a better life because of something you did today. I believe the B-1 treatment program qualifies as one of those causes. What a great time to have this disease and help change many lives, for the good, over the next 100 years.

I apologize to those who think I have lost my mind and to those that, at this time in your life, this subject is too much to think about.

If I become silent, in this community, it might mean that I answered the knock on the door. The people rushed in and wanted me to put a silly looking robe on that had the arm sleeves permanently sowed to the back.

Think about what I said. I trust it will energize you. 🤔

Don

😏

Ha! No silly looking robes for you, my friend! I REALLY appreciate your spirit and your willingness to think outside the box. We aren't stupid and we won't take stupid chances, but it seems to me that we have little choice but to think "outside the box." From my perspective, if current conventional medicine is "the box", and only symptom masking drugs are in it, we have no choice.

You go Don!!! I am right there with you. I will NOT take no or you can’t for an answer. I will prove them wrong . LETS GO!!!! 😊😊

I am one that has tried at least 5 alternatives. Now that I have found the ONE I want to share and change many lives for the better.

ddmagee1
ddmagee1
in reply to RoyProp

Thank you for sharing RoyProp!

People with Parkinson's don't respond well to stressful situations at all. If you are going to watch anything on youtube I would suggest something along the lines of would I lie to you:


I watch a couple of clips of these before sleep and I find it really helps. If Parkinson's is helped by social interaction I think you can fake it somewhat by watching stuff like this.

Grumpy77
Grumpy77
in reply to alexask

Many thanks for this advice!

I agree with everything Jim. I have same thinking thanks.

Good to hear this Jim. What exercise do you do? Do you do any mental exercises? The brain is where our problems lie and we have to exercise that area as well as our bodies.

If you look at my PROFILE and website, reverseparkinsons.net, you will see what I have been able to achieve. It costs nothing but a lot of effort, but you are ware of that already.

Good Luck!

Thanks, John! You are one of my role models. I bought your book when I suspected I had pd, before I was even diagnosed.

Thanks Jim. Have you tried the walking yet? Have you tried any of the mental exercises?

Yes and yes. I personally prefer cycling to fast walking because I think intensity matters and I can pedal quite intensely but fast walking is obviously good, too.

Hi Jim. I appreciate your feelings about cycling, which I respect. However, I want to point out that walking is a weight-bearing exercise, which cycling is not. Your bones react in a totally different way, when walking. Your brain also needs to work much harder when you walk and the brain is where the problem lies.

The choice is yours!

Similar sentiments!

Me too, JimCaster.

I share that perpetual optimism which sort of knits us together & also appreciate our “cyber support” here, on HU. Some of these contributors have made the difference between defeat and achievement palpable for me ( Easilly, Sunvox, Giocas, Kia16, Bassofspades & Royprop to name only a few & John Pepper, of course)!