To Be or Not to Be

[Alock2020]

(Apologies to William S.)

To be or not to be?

That is the question.

Whether 'tis nobler to suffer severe constipation, curling toes, depression, anxiety, mind fog, weak legs, trouble swallowing food, headaches, muscle pain, nausea, and more, and all of it worsening over time, or to take arms against this sea of troubles and by opposing them, to die.

[jimcaster]

I'm sorry that you're asking that question. I hope somehow, some way, you will decide "to be" despite all of the symptoms you are dealing with. This disease varies considerably from person to person. I'm six years post diagnosis and still living quite normally. It's an easy answer for me, but I appreciate that I am lucky. I hope you find better relief of your symptoms and some small measure of comfort in the knowledge that I am cheering for you without even knowing you. I appreciate your contributions to this forum and I respect your courage in asking the question.

[pdpatient in reply to jimcaster]

Jim, I think that the real test comes at the 10 year mark!

[mymomhaspd]

Please stay positive .. we are all meant to fight whatever it is, as long as possible - giving up not an option. Is your food good, exercise esp stretching, are u taking the right supplements (ALpha Lipoic, Acetyl Carnitine, CoQ10, Omega , turmeric etc , are you taking enuf water, fiber and stool softener . What are you doing to stay positive- do u have family and friends around to cheer you up. The list goes on - i should know as i have been fighting for mom for years and every day brings up new issues. Warm vibes and magic hugs - may you be well.

[PEL159Sky in reply to mymomhaspd]

Great concise list of what is essential. I would add C8 MCT Oil and Olive Oil and additional Vitamin B2.

[Alock2020 in reply to mymomhaspd]

Thanks for the advice and magic .

Regarding supplements, I once tried to make a list of all of the supplements, foods, and treatments that were recommended for PD on this site. I gave up after finding about 50 or 60 of them.

[Rafiki2]

I am sure that a cure or a very good treatment to lessen the majority of PD symptoms is just around the corner. There are a number of advanced clinical trials on the go and that a breakthrough will soon be announced. I believe that 2025 will be a turning point but a little more patience is required.

Meanwhile, I would highly recommend music therapy. I was visiting my wife yesterday, who lives in a care home (as I do every day when I leave the office) and she was not very responsive and having a bad afternoon (she has PDD). So, I decided to put on some music (Andre Rieu, who she likes very much) and it was like a switch had been turned on. She instantly became alert, happy and very responsive. A true WOW moment.

There are numerous videos on YouTube showing the therapeutic power of music which are very inspiring. I urge you to try it.

[PEL159Sky in reply to Rafiki2]

Any music that truly inspires the person would help immensely. I take Levodopa/Carbidopa with CBD and organic Moringa powder dissolved in warm and then I listen to some gentle Christian music after I takee a DMG (DimethylGlycine) 1gram chewable tablet. The music makes the medicine work faster and more profoundly.

[Shorebirdsotherhalf in reply to Rafiki2]

“If music be the food of love, play on.”

- Wm. Shakespeare

[JayPwP]

Don't give up... Stand and fight...

[RoyalBlue2]

I'm so sorry you're having those thoughts. Hang in there, please! The scientists will find something to help soon... you wouldn't want to miss that. In addition to the music and nutrition therapy, you may want to check out Qigong... it's a chinese healing/movement method. My husband just found hope for with Wisdom Healing Qigong. It's a particular approach to Qigong. A woman named Bianca Molle did that program intensely for a few years and claims it healed her and she no longer has parkinson's disease. I think she had the diagnosis for about 6 years when she began.

Dr. Joe Dispenza's work also offers hope for possiblity of healing or at least improvement. We listened to his book, Breaking the habit of Being Yourself on Audible. He also has recorded meditations to go along with it on Audible also. I think it's called Meditations for Breaking the Habit of Being Yourself, but that might not be quite right. Just search Dr. Joe Dispenza. He's also on a lot of You Tube videos. He claims that some have healed from Parkinson's at his week long retreats and by following his program. The trick, as I understand it, is beleiving and being deeply willing to really change ourselves... and then to actually change. I'm still working on that!! My husband also recently began taking B1 and it's too soon to know if it's doing anything yet.

Alock 2020, I wish you the very best. I know it's hard to keep trying things when we feel bad. Please don't let parkinson's take away your motivation to live and heal. I'll be thinking of you.

[Parkinsunny]

TO BE is the answer. You got this. I know it sucks, but maybe try talking to someone. Even a hotline if necessary! Are you taking any meds? Mirtazapine is an antidepressant and sleep aid. Botox injections for feet help.

You are an important person to someone and will be missed. Sending much 🩷🩷🩷

[gomelgo]

I hear you. It makes perfect sense to be asking that question. You make sense, and your feelings and questions make perfect sense given this predicament we are in. I'm not going to tell you to fight, or to stop thinking about the question, I think we all think about this question whether we have PD or not. And that too makes sense. Our world can be overwhelming in and of itself. And then we are dealing with debilitating circumstances. You may feel alone, which also makes perfect sense. I will share my own reason for sticking around though. Who knows, maybe it will help you and others too.

For me, this space is for camaraderie and support. Even though some people come here to rag o others sometimes. I don't think that is their purpose, but that is how it can land when one is down. And depression/anxiety is also appropriate given the kinds of prognoses we are given by many with good intentions. But I have come to see clearly that my prognosis can only be determined by me. I talk to myself and tell myself that all is a lesson, and that the results of challenges can either bring new insight and strength, or more suffering. I tell myself that I can't possibly see the whole picture, and that it will continue to reveal itself.

I also started microdosing mushrooms, and I have to say my ability to bounce back from the "not to be" moments has seemingly improved. I could probably write volumes about this. But my shoulder is now exhausted, so I will leave it here. Feel free to reach out in private chat if you'd like. I send you clarity, strength, and self compassion.

[Ghmac in reply to gomelgo]

Waht is your source for micro dosing mushrooms?

[Smittybear7]

Positive thoughts and prayers coming.Don’t give up!

[gomelgo]

Soulcybin

[LagLag37]

After 20+ yrs I’m thinking seriously about DBS surgery. Have you thought about it? I hope you the best. Keep fighting! 🥊

[Logon206500]

Never give up. I've got PD 2 years ago at 57 yrs after surviving aggressive prostrate cancer at, I'm using alternate therapy devices PdCare 904 laser, light helmet and vibrating gloves pdbuzzboard design ,with great results. Check out this site fight-parkinsons.org/Keep positive and enjoy every day.

[Mark000]

First, let me express how much I appreciate the participants here on HealthUnlocked. All of the comments to this post (and so many other posts) are so helpful to me. To this conversation, I would just add that I gained a lot of inspiration and perspective on this topic through reading Linda K Olson’s book titled “Gone”. Really an amazing story...