My girlfriend called me the other day and the opening greeting was "Hi, how's your Parkinson's today"? to which I answered,"Still progressing"!, "Good, good", she said, and then proceeded to tell me about her sister who was drinking some magic juice from an amazon flower and was now cured of her once debilitating diabetes. She always wants me to try some new cure all diet or take some kind of magical fruit, and all I want her to do is stop! Just Stop! Stop trying to cure me, Stop telling me about some book I need to buy that hold all the answers, I already have one of those, It's called a Bible! Or about a some special vitamin you can buy or a tea you can drink that will remove all the toxins in your body, I did not know Parkinson's was a toxin. I listen politely, all the while trying to think of an excuse to get off the phone with her.Why Bother. I wish someone would tell her a sack full of peanut butter cups and popcorn would cure Parkinson's! Now that's a cure I could get behind!
Jupiterjane
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jupiterjane
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I can relate. My father was always trying to sell me a "miracle in a bottle." I finally convinced him that I was his son not a customer. He also had PD and lived to 93.
It must be a genetic trait... my sister is also trying to sell me "the miracles in a bottle."
My take on all these "wonder jungle juices" is if they worked for PD we would have heard about it. Just another multi level sales scheme to sell more "jungle juice!"
Feeling useless? Have no purpose in life? Find a person with a chronic, progressive, incurable disease and bombard them with useless information. Make sure your face is creased in an expression of concern so you look like a shar pei. Observe how they run away and seek the company of someone who has a joke, a helping hand and/or a hug!
Hahaha! Or I should say in the spirit of the season, ho ho ho!
Hi Jupiterjane,
I have always disliked the term "progression" when applied to Parkinson's - it is misleading and misunderstood by people who are not familiar with how it all works. However, I do appreciate people who are aware that I have Parkinson's and are concerned and understanding enough to want to help, rather than being oblivious and unconcerned or not caring why it totally has changed our everyday lives. So, that's how I look at it - I think that she is being a true friend. It does no harm to check into some of the suggestions because that's what I do. I look into everything holistic because our doctors are clueless when it comes to that. It's especially complicated since it is such a designer's disease. Researching gives me hope. In this day and age, detoxing is important. Excercise is important. And anti-oxidents and supplements are important. Putting it all together into a package for yourself w/ the help of a nutritionist will work wonders. I do it myself but with great care. I am doing really well and it's been 10 yrs. since dx. It keeps me positive to be proactive and it's better than doing nothing. So, just my 2 cents worth - keep your friend - we need them!!! Let her stick around because Parky isn't leaving either.
OH! I would never get rid of this particular friend, she really does mean well. I just get wound up occasionally because she continues to ask the same questions over and over, and never really seems to pay attention to what I'm saying, but I love her non the less. We have been friends for longer that I have been sick and we will be friends forever.She tries to look after me and help me in any way she can, but you know. illness changes things. It changes relationships, how people look at you, what they expect from you, how they treat you. And for me it is a challenge to understand and accept the changes. and so I vent, and so I vent...
I am new to this blog and to blogging in general. I wrote for the first time a while back because I got so excited about how I was able to substitute mucuna for Sinemet - I wanted everyone else to try it too. Anyway, I just looked you up - there was something about the way you write - flowingly smooth. Sure enough, you are a writer and an artist. I knew it! We have something in common. I am an artist also - although it's coming to a slow halt. We just moved to Medellin, Colombia and I put a roof over the smaller terrace to turn it into a studio - thinking I could still paint. Well.......it's really hard to find a time that I feel like painting, or have the energy to pick up the brush. Now I know who my new venting friend is.....YOU! I saw your painting called CHI - which apparently is now blocked by this bleeping illness! My husband made a website for me to document my paintings over the years. I'm so grateful to him for doing that for me. If you have time, you can go to it - it plays my favorite song and tells a little about me - but what I like most is that it has a calming effect on whoever goes to the site.
Medellin is beautiful, it's like living in a garden. I can get lots of domestic help, and I thought it could be our long term health plan if I get more disabled. So far so good, but one never knows. My daughters are wonderful, but I didn't want to disrupt their busy lives. We now have less time together, but I'm opting for quality time with them and the grand-kids.
Tell me how your painting called CHI came about - when did you paint it?
• in reply to
Sorry, Jupiterjane,
I thought you had painted CHI - what's the story behind your posting this painting? You just like it? I practice Chi Gong - my mom taught me. It's supposed to be good for Parkinson's.
I went to your site and was very impressed! Your work is beautiful, full of energy and color, every stroke of the brush adding another layer to the story.
I did not start painting until after I developed Parkinson's. Oh!, I did a few craft projects and make some greeting cards but my life has always been consumed and defined by words. After loosing my job, I was feeling useless and bored, My kids gave me an easel , canvas and paint and encouraged me to try something new. So I began to paint. I painted what made me feel good. Over time it has grown into another form of expressing myself and I am grateful for it. I am loosing my poetic words. Poems use to flow so easily from my pen, seemingly non stop, a constant purging of words that gave me the strength and endurance to go on, but now I have to tare the words from me causing the physical pains of anxiety and frustration.
We are so lucky to have kids that are so caring and so sweet! I love that they got you started on painting. Keep up your wonderful way with words. Your poem made me cry after just a few lines........
I have been diagnosed for about 1 1/2 yrs ago. Still trying to come to grips with PD. Still shocks me every so often. Just hits me. Yours is a very kind and thoughtful response. Succinct summary of what we all can do to be proactive. One thing you mention that I have yet to see associated with PD treatment is detoxing. What do you do. What do you use?
Hi, finlander, I think you were responding to my mention of detoxing. Whatever is suggested for optimum good health, I figure has got to be good for us. Hence, lots of exercise and consumption of fresh veggies and fruits. I'm not sure what caused my parkinson's, but, most of us have toxic substances stuck in our system by now. I use a system called MMS, a controversial protocal started by Jim Humble. Of course the FDA has been after him, and he's been chased out ot the US and started a "church" in order to escape persecution and be able to operate. So, now he sounds like a wacko. But big co.s selling their products on TV ( the Cialis ad cracks me up the most ) sounds more crazy to me. He doesn't sell anything - the substance is just a chemical activated by citrus acid. They use it to purify water on cruise ships, hospitals, and he has healed 1,000s in Africa of malaria. I don't go crazy w/ it. I just take the maintenance dose of 5 drops. You'll have to do your own research and make up your own mind. It is very safe. It's helped me w/ arthritis pains, allergies, asthma, and very strangely, with night terrors, which used to torment me and especially my husband every night. So, it has helped me with better sleep. That has completely gone away. Just found this out by accident. Also have taken coQ10 for 10 years, and now something called Astaxantin - another high power anti-oxident. I have my bad days, but most days, people can't tell I have Parkinson's. My constant battle is to figure out how to beat this thing without taking Sinemet or other pharmaceuticals and wait helplessly for the whole thing to stop working. Also fighting to keep depression and dementia from coming on, and fatigue from consuming me. So, when I research - I don't limit myself to Parkinson's only - I try to look at the whole picture and just use common sense
Greetings allnatural- Thank you for your helpful response. I see the value in detoxing and need to try it. Are you able to amplify on the MMS system you mentioned or say what the chemical is that is activated by citrus acid? Alternatively, I will research it or perhaps try a commercially available probiotic.
Like your husband, my wife has had to put up with my night terrors. Thankfully, I have yet to hit her directly when I lash out. She is determined to sleep in the same bed after 40 years. Somehow, it is comforting just to hear from someone who has to battle the same stuff. I just signed on to this website a few days ago, having avoided them since I was diagnosed 1 1/2 years ago. I guess I have been in denial or fearful of becoming depressed from readings these posts. Thankfully, the opposite has occurred.
I am sure that you are not surprised to hear me say that there are also other symptoms that we share, depression, fatigue, cognitive function issues, etc. I also have trouble getting to sleep and then staying asleep. I was quite interested in your tea remedy for that. Wish it wasn't still outlawed in this conservative state of Missouri where my wife and I recently moved (following our early retirements).
Like you, I am a big believer in regular exercise - and I try to eat several servings of fresh fruits and veggies each day. In that regard, I wonder if you have ever heard of Dr.Terry Wahls from the Univ. of Iowa, who cured herself of advanced stage MS by dramatically changing her diet. Her U-Tube video is incredible. She espouses the Paleo diet with 8 to 9 servings of fruits and vegetables per day.
be careful of the well meaning people in your life. my husband is always coming up with something to help me gain weight. which isn't quite the same. i don't think it is doing anything. bur i figure , once it's gone, he will see that it isn't working. .what next??
i love his thoughtfulness , but it isn't doing a thing ,and i didn't think it would.
I can't believe you just started painting not that long ago. I started painting more about 20 years ago - dx w/ Parkinson's 10 years ago. You've developed your own style in a short amount of time. I go right to it and I used to finish something in one day. Now, I've slowed down, but of course there's not the urgency to get ready for an exhibit either....more the urgency to take advantage of a good day since we don't know what tomorrow brings.
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