Disheartened: I Asked my nero the following... - Cure Parkinson's

Cure Parkinson's

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Disheartened

Jmellano profile image
23 Replies

I Asked my nero the following:

is it true to say if a cure for PD was found, that I would still have the symptoms I have today since there is no hope for the neurotransmitters for those functions are dead?

His response:

It depends on the nature of the cure. If it halts disease progression, patients will either stay at their current level or experience slight improvement as the brain cells that are dysfunctional but still present recover function. If the treatment is also regenerative, we may see more significant improvement. It's possible we'll find that there's some combination of disease-halting treatment and regenerative therapy (like stem cells) that would be ideal, but it may take time to sort all of this out once each set of therapies is identified.

its a lot to hope for... I am so disheartened

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Jmellano profile image
Jmellano
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23 Replies
MarionP profile image
MarionP

Well you know there are things that help and things that do not help. One of the things that do not help, as you might gather, is to engage in rank speculation and hypotheticals and then attach your emotional health and well-being to that process and to the answers, which will be uninspiring and worse proportion to the degree of speculation or hypothetical you have posed.

Think of it as a bad habit that hurts you, like a damaging substance or food that you get into the habit-track of craving but know you don't need it and shouldn't have it, and yet still voluntarily pursue.

Or think of it as the following conversation between a patient and physician:

Patient: "Doctor, when I do this (voluntary activity), it hurts."

Doctor: " Don't do that. (Pay the receptionist on your way out.)"

When I was older and knew more, including to read on my own, I encountered some classical philosophy that I had somehow missed in my college years. It turns out that this philosophy was easy to learn and not difficult to apply and very very helpful. It is called stoicism. It is really worth checking into and learning about and reading some and then thinking about applying it. Doing so can actually be rather heartening. An example of it is commonly called "the alcoholic's prayer."

LindaP50 profile image
LindaP50 in reply toMarionP

Well said, MarionP.

Do what you can to live each day with intent. Keep moving forward.

There is always hope.

DogsWoode profile image
DogsWoode in reply toMarionP

Ah ha ha...there were some laugh out loud moments there Marion!!

Jmellano profile image
Jmellano in reply toMarionP

MarionP, I am not sure I understand your response. I think because so many of us suffer the horrific symptoms of this disease, we are entitled to having a pity party, yesterday was my celebration

MarionP profile image
MarionP in reply toJmellano

Sorry if I misunderstood your intent, read what you said again and maybe you'll see how it can be taken more ways than one. It sure looks like I'm not the only one to have seen it that way. 🙄

crewmanwhite profile image
crewmanwhite

There are already ways to find the causes of your symptoms and reverse them. Many have done that. Check these free blogs - returntostillness.com.au/blog

7springshollow profile image
7springshollow

Check out the stem cell research at Hope Bioscience. They are having great results with regeneration.

Buckholt profile image
Buckholt

Successful research and especially a cure, depends on a solution being affordable for everyone. Imagine stem cell treatments prove effective but the cost is $100k. Probably unaffordable for most and unfundable for state health services as well. In those circumstances, it would be as if the treatment didn’t exist

gomelgo profile image
gomelgo in reply toBuckholt

Similar to what folks used to say about the electric car ... if it becomes ubiquitous and there is enough competition, perhaps prices will fall too?

LagLag37 profile image
LagLag37

Don't be disheartened. They are always new things coming up that help your symptoms. They haven't found a cure yet but you never know. There are currently some things out there to take advantage of if you just try them. This website is a good place to start. There are foods that help, vitamins, exercise, meditation, DBS, FUS, stem cells, etc. You might try Laura Mischley's website. You can check out rocksteadyboxing.org for exercise. I've had PD for 21 years , I'm 67, and just had DBS. The things I just mentioned have helped me quite a bit. If you have any questions, let any of us know. Another thing, look in the mirror everyday and say" I have Parkinson's but it doesn't have me!"

Jmellano profile image
Jmellano in reply toLagLag37

Laglag37, I have done RSB, and it is the best thing out there for Fighting pd, also, I am a patient of dr mischley. Fatigue and ability to drive have prevented me from continuing with rsb. I have tried b1, red laser, mannitol, , ps128, ,cinnamon, plus traditional c/l therapy, all to no avail

LagLag37 profile image
LagLag37 in reply toJmellano

I'm so sorry you can't do RSB. It's such a good program in so many ways. It's good you have other options to keep you busy.

🥊 Keep fighting!!

DEAT profile image
DEAT

Some PWP have symptoms that are relentless. When I am really down and struggling I have a pity party.

BUT the party has to end. I allow myself a time - say 2 hours, half a day, one day etc.

When the times up my party is over.

That's it PARTY OVER.

I'm not making light of the horrible situation some of us are in.

But in my case humour gets me thru. It's either humour or buckets of tears.

Hope you have some respite Jmellano

Jmellano profile image
Jmellano in reply toDEAT

thanks DEAT. i am not the party animal i used to be

DEAT profile image
DEAT

I've been on this forum since 2015. I remember in my early days reading many of your encouraging posts and found motivation and hope in your writings.

I now sense a sadness developing .

Do we have the energy to keep trying.

Can we muster the courage to face another day. Are there more bad days than good.

We can't surrender

I pray for a peace to descend. Strength for another day. A flicker of hope for the future. And a joy in your heart again.

Blessings to you 💜

Jmellano profile image
Jmellano in reply toDEAT

your response broought tears to my eyes. I am so weary of fighting this monster. even if i win some battles, PD will eventually win the war

DEAT profile image
DEAT

I hear you JmellanoAnd my heart breaks for you

I'm in Australia 🦘but I wish I could give you a big hug

Sometimes grief overload is too heavy to carry

What can your friends (& I) on this forum do to help you ?

Jmellano profile image
Jmellano in reply toDEAT

Dear. , I am a Survivor and plod my way through life (cancer and , suicide loss survivor) This too shall pass and I will leave my pity party, but sometimes I just sink so deep into the pit of despair.. and pd is very good at making me sink..

DEAT profile image
DEAT

Lovely lady you are climbing out of the pit of despair

PD hasn't won yet. You are plodding along

You ARE a survivor

Don't forget you gave me hope years ago.

Thank you.

So proud of you my friend

Jmellano profile image
Jmellano in reply toDEAT

I helped you in the past?

DEAT profile image
DEAT in reply toJmellano

I think you use to write an article on a different forum/publication many years ago. It was helpful to me.

Jmellano profile image
Jmellano in reply toDEAT

thankyou DEAT. i really appreciate the feedback, As a writer, one very rarely sees or hear hears if they have impacted anyone with their articles, i used to write about Parkinson's from 2018-2022 on parkinsonsnewstoday.com my column name was'Slow is the New Fast' I no longer could be positive inmy writings about Parkinson's, so I stopped writing.

DEAT profile image
DEAT in reply toJmellano

Yes that's the one . I looked forward to reading your writings.I'd often think ,"if she can, I can "

We never know who we've touched or influenced as we go thru life.

As I said THANK YOU

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