I wrote this last night and wonder so... - Parkinson's Movement

Parkinson's Movement

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I wrote this last night and wonder sometimes if anybody else feels this way occasionally?

Dmr65
Dmr65

I grieve for the man I used to be

The man whom I knew, who used to be me

I grieve for the life I used to live

That I’ve no more to offer- no more to give

54 Replies
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Hi David,

Occasionally? Sure!

I think the trick is to keep it that way (i.e. occasionally).

It's a great poem, by the way.

Jeff

Dmr65
Dmr65 in reply to jeffreyn

Thanks chap 👍🏻

More often than I wish. Nice poem, sums it up nicely 🙂

Dmr65
Dmr65 in reply to Nitro53

In the words of John Denver some days are diamonds and some days are stones 👍🏻😂

my husband felt the same way. He had occasional pity parties but I think we all have these thoughts especially if you have a chronic disease.

Occasionally ? No

Most of the time. yes

"For all sad words of tongue and pen, The saddest are these, ‘It might have been’."

- John Greenleaf Whittier

He awoke each morning with the desire to do right, to be a good and meaningful person, to be, as simple as it sounded and as impossible as it actually was, happy.

Sometimes I will make a birdhouse or something but it turns out a waste of good material. Cant cut a straight line. I don't have the nerve to try and start another painting. No one needs us.

It could be worse. It could be our own fault. (maybe it is )

A pity party ? No, more of a cold realization that I am not justifying my existence any longer and that I am now a burden.

Cleo16
Cleo16 in reply to GymBag

Please don't say you're a burden. I value your wisdom and kindness. I'm sure I'm not the only one. You have so much to offer. Come on GymBag get a grip! 🌻

Manypony
Manypony in reply to GymBag

ooooo the fault thing!!!

There is something that you can do to get that man to return. It involves a small amount of exercise and some commitment. No pills will do that. If you want to know more then give me your email address and I will tell you everything. at no cost to yourself.

Rich-e
Rich-e in reply to JohnPepper

Hello Mr. John Pepper. I read your book and conclude that your solution to Parkinson’s is MAO-B , coupled with fast walking. Is that right? is there anything else?

JohnPepper
JohnPepper in reply to Rich-e

Yes. You should not need to do anything more than what I suggest in my book. What problems are you having?

Rich-e
Rich-e in reply to JohnPepper

Well for one thing I have bad knees which prevent me from walking fast. Also, I’ve been on the Dr Hinz Macuna protocol for about a year, so I haven’t tried MAO-b yet. My symptoms are typical - tremors, stiffness , sleep issues, handwriting, voice got softer, speech slowed (cognitive?)

JohnPepper
JohnPepper in reply to Rich-e

What do you mean by "bad knees?" are you able walk at all?

Rich-e
Rich-e in reply to JohnPepper

Left one is a total knee replacement,And right one is bone on bone

Rich-e
Rich-e in reply to Rich-e

I can walk, but not fast.It’s painful

That isn't good news. I don't know what to suggest! If you are able to find an exercise routine that makes the brain produce more GDNF, you will get the same result.

The only way I know that I am winning is that when I am doing the fast walking my symptoms stay at a low level but when I stop the fast walking my symptoms start to get worse after a couple of weeks.

John

Rich-e
Rich-e in reply to JohnPepper

Hi John pepper. First off I want to thank you for your kind correspondences. I googled ways to increase GDNF, and it seems that the type of exercise is not that important, so I’m thinking the rocksteady boxing class I do three times a week, in addition to stretching and crunches the other two weekdays should be enough. What do you think? My search on increasing GDNF showed that diet and melatonin also play a role. What do you think?

JohnPepper
JohnPepper in reply to Rich-e

Have you tried the Fast Walking exactly as I have? If Not, may I give you all the details and rules to get the best results.

The medical world does not appear to want to talks about GDNF.

Artificial GDNF is the only Chemical (Protein) that has been proven in studies to reverse Pd Symptoms, but the problem and expense is getting the GDNF into the brain.

GDNF is already being produced min the brain but not enough for our needs. If we can produce more GDNF in the brain then that does nothing to put money into the pockets of the medical world, so they don't do anything to encourage us to find ways of producing more GDNF ourselves.

MY experience has been that I HAVE REVERSED MY SYMPTOMS TO A LEVEL WJHERE i DON'T NEED ANY MEDICATION. That is not good for the medical world, so draw your own conclusions.

If you feel that you can get the same results from what you suggest then that is your choice. I would rather stick to what works!

Rich-e
Rich-e in reply to JohnPepper

Sorry, I tried to get you my email address but this platform won’t allow it. How do I get that to you?Thank you

JohnPepper
JohnPepper in reply to Rich-e

They allow it if you give them permission to do so,

Rich-e
Rich-e in reply to JohnPepper

How do I do that??

JohnPepper
JohnPepper in reply to Rich-e

Just reply to me and say, "This is my email address - johnpepper@telkomsa.net". Then reply. You will get a warning and you click on "continue"

Rich-e
Rich-e in reply to JohnPepper

This is my email address “ reasonablerentals@gmail.com“

I have been grieving for almost 20 years. I am a lucky one whose symptoms have moved along slowly. My three grown children bailed in the beginning, thinking i would be a burden in the near future, as well as many friends. I totally understand you would like your old life back and I wish I could be some help.

Even though your last line rhymes nicely, it’s not true. This

YouTube video just might inspire you to change it.

youtu.be/8jhcxOhIMAQ

Dmr65
Dmr65 in reply to debmorris1

Astounding video many thanks for the link

My dear Dmr65, if you can pen words like that, then you have more to give, a different life to live and an other, wiser self to be.Its ok to feel that way. So much is changing in your world.

Embrace the changing self. Accept the changing self, the newer you. Use your great command of language to help you...it can help others too.

Embrace, accept, just be the best new self you can be. I will walk with you. Love, light and gentle acceptance to you on your journey.

Dmr65
Dmr65 in reply to Maxjc

Thank you for those incredibly kind words.... it’s uplifting to know that there is support out there from strangers to friends. Thank you

Change is hard for so many. By the Grace of God my hwp has embraced his new life circumstance and he strives to do the best he can each day. Someone commented about your writing - you should continue in a journal and see what talent in writing you can do when you put pen to paper. God Bless you.

Dmr65
Dmr65 in reply to Spencer53

Thank you - I’ve started and it’s quite cathartic..

OREOLU
OREOLU in reply to Dmr65

Hi, it seems your status quo reveals the best in you. What don't kill you, makes you strong. As long as we are alive, we have hopes. Maybe this year is the year of breakthrough cure for PD. I feel your feel, and I pray to the Lord. Because, only him knows why we have to go through this phase, in life. Please, do whatever is your favorite thing, that makes you happy. Cheers!

I’m curious when you were diagnosed. I felt exact same way the first year after I was diagnosed. I wrote tons of poetry trying to get my feelings out. Then one day I had an Epiphany. I thought I could be happy with PD or sad with PD but I was still going to have Parkinson’s. So I adopted the quote “life isn’t about waiting for the storm to pass it’s about learning to dance in the rain” as my mantra. I Became an inspiration for others. And I’m now living happily. I got certified as a yoga instructor and 12 years into my diagnosis I am still teaching one day a week on zoom. Find your new version of you. There is still much to give and do. Just find it. Good luck! You will.

Spencer53
Spencer53 in reply to Jebbie12

Congratulations - what a beautiful Epiphany. Your spirit grew and you are a shining example for folks.

I like your poem as well. Your honest directness helps all the rest of us grieve for what we have lost. May I suggest meditation? It helps me realize that all we have is the present moment, the transient nature of feelings and how much our attitude shapes our experience. I have found it to be very helpful. Also I take Lithium Orotate 10 mg which also seems to help with the pandemic stress which is certainly not good for PD. Blessings and keep on writing and recording your journey.

Spencer53
Spencer53 in reply to pmmargo

I'm just learning Qigong and there's plenty of videos to learn from.

Ca1208
Ca1208 in reply to Spencer53

I love qigong! I do it every day first thing in the morning and I’ve noticed a difference in my symptoms over time.

Spencer53
Spencer53 in reply to Ca1208

As a care partner as things build up, I recognize how I'm feeling - Covid not helping and so I was happy to come across Qigong and am involved in a weekly session for women's health till May. Love what I'm learning.

It is all a matter of values. You were probably a doer previously and your previous values are not suitable for you now, therefore you have to find some new ones. Look at the home cats. How they live their lazy life and are fed and loved and necessary for the family.

You can become another you and you can be as good as the previous.

It is not easy but when the going gets tuff, PwP ...

Absolutely, I felt that way yesterday. It is 6am as I write this, so who knows what today will bring. I am working on coming to terms with the disease. For me, it has felt like a wholesaled change from what I had envisioned for my life. I am still pretending to be the same but my symptoms are escalating so I am starting a new vision board. New things to look forward to.

I look at it this way - we are the future -our data, our experiences, our input, our pressure on healthcare providers and research institutes will inform today's researchers on the future cure/disease modifying agent(s) for PD. We are in a unique time period where the focus has moved away from studying treatments/agents that just address the symptoms of PD (approved treatments still just address symptoms) to those that try to address the root cause(s) and/or mechanism of action(s) for the disease. We must keep up the pressure to continue research on finding an effective treatment to slow the progression/cure this horrific disease. We are the future!

Canddy
Canddy in reply to Canddy

By the way this forum has been a godsend to me!

Beautiful raw poem, really feel it🙏🏻 What I notice, is how inside of a day, I can experience SUCH A SPECTRUM of emotions and feelings. From hope and optimism to despair. I deeply appreciate your share. I grieve the woman I once was, often the woman I am now, and still work towards recovery every day

Exactly.

Beautifully written.

Beautiful poem.

I grieved for me and then decides i better live whilst i am still able to move. I sold my hhome i london n moved to rurall france. I have swoped living with my sons to living with my new best friend - my dog. We look after one another

Its still ur life its just a new one. Accept and move on without judging yourself. Life is beautiful as is ur poetry

I’m sure my hubby with PD and 78 yrs old would say the same. His weight is more than it’s ever been too. We’ve decided to opt out of the Covid vaccination right now due to side effects I’ve heard off. Has anyone here had side effects? On the Fibro site I read that people who have had Covid have Fibro symptoms after. . So, I’m confused. M.A. in the USA

chartist
chartist in reply to grandmama16

When you say "Fibro", are you referring to fibrosis of some type, fibromyalgia or something else?

Art

The COVID vaccination was nothing. I had it three days ago and had no reaction at all,just great peace of mind.

It’s also important to know that if don’t get the shot, you are a vector for infecting others. With regard to the beautiful poem, I expect we have all felt that way. Although l am not always successful, I try to look at every challenge as an opportunity. Sometimes it’s a pretty big stretch but it gets my mind trying to help others., which invariably helps. When my dad had ALS, he said it was more blessed to be able to give than to need to receive. We give others an opportunity to give and that is important too

Dmr I understand how you feel. I too grieve the person I was and the life I had. I try not to stay in that mind set but I do have the pity moments. I was an athlete, ultramarathon runner , been married to the love of my life for 39 years. When I was diagnosed in 2013 I thought I was going to figure this out and help everyone too. Well the disease let me know how strong it was and has limited my running and killed my spirit. The love of my life has turned to alcohol and has had an affair. Never in my mind did I see that coming. I have been unable to run due to a severed hamstring and had surgery to reattach it, so I walk. I do feel defeated and I am trying to work on me and staying positive and stop micro managing others. With all that being said, I am grateful for what I have because I know there are people that have things worse then me. Just know your not alone . Take care. Karen

Dmr65, Such beautiful words! Expressive prose that shows your emotions. I must say, you have so much to give! I can so relate! I have lost much, but have decided to embrace the positive aspects, of what I can still do, not on what I have lost! By concentrating on my current strengths, I have been able to minimize the strong emotions of loss! Just one example of what I’m proposing for you, to consider! I have many years of training and performing publicly in the classical music and acting fields. Acting and singing classical music theatre works, is a very demanding, performance based activity, that requires a great deal of bodily cooperation and coordination! I remember when the subtle symptoms of having Cerebellar Ataxia, and Parkinson’s Disease, started affecting my performing ability, on stage, years before I was formally diagnosed with those insidious ailments! As symptoms came up, making coordination, walking, singing, speaking, playing piano etc. more and more difficult, I was shocked, to say it mildly. Before diagnosis, I was not able to put 2 and 2 together, and had no idea that I was having serious neuro-degenerative issues, causing my stiffness, lack of coordination, tremor, voice problems etc! Finally, when I had to completely give up public performances, and had been diagnosed, I realized that my loss was profound, and hard to accept! I decided that the only way to cope, was to accentuate what I was still able to do, and to stop frustrating myself by trying to do, as I had done, for many years. So I’ve worked on a positive attitude, and even though I can no longer perform my art, as I used to, I can encourage and help others, appreciate the joys of being creative, in the fields of music, performance, and theatre! I don’t think about what I can no longer do, in the context of grieving greatly, and feeling that I have nothing to give and live for, anymore! Reaching out to others, enjoying great music and art, as a spectator, rather than being a performer, is my mantra, now, and I find purpose and satisfaction knowing that at least I can still hear and see, and appreciate the amazing world of artistic expression! I hope my story encourages you to reach out, and embrace life with a different perspective, where you are able to enrich your life, so that you have joy, peace and happiness, and feel some level of comfort, in the situation you find yourself experiencing, through no fault of your own! Wishing you only the best!

Dmr65
Dmr65 in reply to ddmagee1

Thank you so much for your wonderful words of help and support. As much as it is awful to see so many people afflicted with this disease, it is strangely comforting to know that one is not alone.

ddmagee1
ddmagee1 in reply to Dmr65

You are not alone, Dmr65! I’m glad that gives you some comfort! This HU forum has been very helpful to me! People who have similar health issues, like mine, seem to be able to know exactly how to be supportive, understanding and helpful! I have been encouraged by many others, commenting in this Parkinson’s Movement forum/blog! I have found, over the years, that I get more support from this group, than I do from some of the medical professionals, and family and friends that I have, in my life! There’s nothing like communicating with people suffering from the same ailment, as I have been diagnosed with! Actually, people, in this forum, who have Parkinson’s, are the experts, on how to cope and live with the disease! Take it easy, now, and know that you have understanding friends, here!

Kwinholt
Kwinholt in reply to ddmagee1

Thank you for your positive outlook. Unless you have Parkinson’s , this disease is hard to explain for others to understand. I have people that are supportive and try to understand but truly don’t know. Take care. Karen

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