............... well actually, I'm not. What would you define as very well? The fact I get on with my life as best I can and refuse to just roll over and give in? Believe me if I thought that was an option I would jump at chance, well not exactly jump more of a slow amble.
We are not super heroes because we have got this far, we are just ordinary folk living our lives. The human race is amazing sometimes, but sometimes we have to remind ourselves of this. Ask not what mankind can do for us but what can we do for mankind. What we can do is educate others, not about or afflictions but about life as we see it.
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anthonyjohnrobinson
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Yes I agree some medics babble on about what PD is but if they asked the person living with it I believe it would be very different. thanks once again for your down to earth comments x keep striving
Do you honestly think anyone, excluding other PD Patients, want to see life as we do? I have found that people in my life either pretend I do not have Parkinson's, or down play it and all its obvious symptoms. My wonderful Robert, who lives with all the ugliness of my diseases every day, still believes that I will "be cured" and all my pain will disappear! My Family Doctor, or rather his P.A.. also talks about curing me one day! I accuse both Robert and my P.A. of suffering from the "Pollyanna Syndrome". Life is just not all that glorious!
What I was suggesting was or should have been that we look beyond the ugliness, to what we as individuals and we as a collective can do not what we can't do. if we are not fighting this for ourselves, we are fighting for our children and everyone's children.
I don't know why we're cursed with the Devil's Puppeteer or why my friends son is termly ill at the age of 36. but to give in, for me is not an option.
I agree with what you .PD is what it is but what can we do to help others. A lot of people do not even know about PD.What is thought of a bad can be turned around and used for good.I am not giving in either.God Bless you.
I will never understand why the weakest and most physically challenged have to teach the rest of the world how to live with dignity and grace in spite of the incredible pain and the non acceptance by others of our lot in life! Incredible!
Maybe you're right but I am a fighter, we all are, but sometimes it is not clear what to fight. So we go of at a tangent and fight the ignorance and educate the world.
I am just so tired of helping people understand this disease. It seems that if you don't "look sick" you must not be sick. I especially am appalled at the doctors who don't know much about Parkinson's Disease but are willing to "learn as they go"at your expense.
I don't pretend to be a hero or a teacher. I make no bones about the fact that I hate this disease and everything it encompasses.
I'm right there wirh you JJ. The only one that really gets it is my Tommy, because like your Robert, he has witnessed all of PDs ugliness (so far). As for the doctors I actually met with one of mine on Friday and gave him specific instances of his staffs treatment of me and suggested they perhaps needed some sensitivity training. He was appalled at this and said he was glad I told him and he would deal with his staff. He assured me things would be different at my next viisit. I'm loooking forward to next Thursday's visit when they are all smiles with me and under there breath calling me a "B****"! But it will be worth it if they learn from the experience.
Thank you for bringing this issue up so gracefully. I find it interesting that all of the people I meet and know often say:"But you look terrific. And isn;t that all that counts?" and of course I answer politely, "YES!" They have no idea of the pain and nastiness of this disease.....only my dear husband and caregiver knows.......But I realize that I have a choice each moment, each day of my life: THis disease will either influence me to be a better person or a bitter person. Certainly I choose to be better...for that gives me a chance to live each day as best i can. I am not a hero. I just want to enjoy my life for as long as I can.
I know how tired and frustrated you must be.I see how frustrating it is for my Dad, dealing with PD everyday. People are ignorant, or in denial Drs don't know enough and the disease itself just sucks! I can tell by your poetry that you are a sensitive person and a deep thinker.
Just the fact that you get up each day and do what you must/can do takes a heroic effort.
I work in the fitness industry and often start my day at 4am.
When I get up early every morning and go about my day,( often when I would rather stay in bed than deal with people), I think about how my Dad struggles just to get out of bed and function. In this moment, I snap to my senses and realize just how easy I have it and how fortunate I am to be ABLE to jump out of bed and be active.
There are people out there who "get it". I try very hard to put myself in my Fathers place and see how difficult each day is for him...But I know I can not begin to feel what he feels. Even those who love you and WANT to understand can never really...BUT I am so glad that my Dad will talk to me about it and help me to understand what life looks like through his eyes.
Please don't give up on helping others to understand. Your words can help so many.
Thank you for your words, they really hit home this morning, after two rough nights of dealing with my husband. I know that he suffers more than he lets on, and that he really tries to do for himself. I'm just frustrated with all the drugs and how quickly symptoms return. I should count my blessings, since my husband has done so well for over 25 years after being diagnosed.
We have got the complaint nothing much we can do about it except take the medicine.
try to do our best. Try to keep a sense of humour (if Possible)
And no matter how bad we are there is always someone else worse off.
Not much of a comfort I know, especially if you feel bloody lousy.
But thats all we have.
We have to sink or swim.
I shall be the first in the queue for water wings when I start sinking.
I agree, it can be irritating when people say 'you look well' ot 'you are doing very well', but I's probably meant to be complimentary! They probably are thinking 'I'm glad it's not me'. No-one can understand the effects of a medical condition unless they have it themselves, whatever that condition is, no matter how much theory they have studied. We have to find a balance betweeen self pity and telling it as it is. I think the more that general public are told about Parkinson's, the better they will understand, but it will take forever, some will and some won't. Keep calm and Carry on
Hi there, I'm new to this website and I like reading the comments. I do have a suggestion, if anybody has heard of 23andme,its a genetic research company that is building a bank of genetic information on people with PD in the hope of finding a pattern that will lead to a cure. They will do your profile free if you have PD, you just get on the website and fill in the information. They already have thousands of people with PD registered and it seem's a great and easy way to be proactive and do something to help ourselves and others. The only way forward in finding a cure or better drugs is to educate ourselves better about the disease and to get more involved in research, it is possible. Too few people know about, or participate in clinical trials, therein lies the problem. Did you know it can take up to 3 years to recruit patients for a research trial ? If we all played our role with regard to research we could "fast track" our way to a cure, now is'nt that a wonderful thought !
It is a shame that if you are out and about doing well, maybe the meds are working today, or its just a good day, people think, you're not to bad, they don't see the dysyonia, the overall pain we go through, at that ime you look "normal and well" to them. I think it makes it much harder when that bad day shows up, when nothing works, the feet and legs cramp up, walking almost impossible, speech barely there, so many things. I get the feeling a lot of bad days people think I just want sympathy. Nothing could be further from the truth, I just want relief.
They don't understand that each of us is just an experiment for the medical profession, each dr, practitioner, or nurse is experimenting with our care because we are all so different in our PD, and they don't have any answers. I think they get tired of our complaints, symptom because they find it hard to believe what is really going on inside. Most of my tremors are internal tremors, try to get someone to believe that, if they don't see it, it must be in my head. I guess it is, my brain is doing it to me. But it is as real and painful as anything they get to watch.
I attended a picnic yesterday for a man who is suffering brain cancer. There were 150 people there (the house and grounds are enormous). People were constantly telling me how well I looked and how easily I got around with my walker. The walker is the answer because it keeps me balanced. The weather was perfect (in Seattle) and so what was there not to enjoy. Most people did not expect me to attend, but I am so happy I did. Met 0ld friends and my husband and I really enjoyed the day. Of course, today I am exhausted, but worth the socializing yesterday. You've got to move when the opportubuty strikes or you end up sitting in dark rooms becoming more depresssed by the day Good Luck.
I think you are doing really well to think about doing something about parkinsons awareness for the next generation. Good luck to all of you who left comments it was good to read all of them as I have had such a bad day. AUNTIE kATH
Well, AJ, I did not read all the comments your post elicited, assuming that most if not all fit in one from column A, agreement, or one from column B, objection. Wow three hour have fled and the symptom that steals my time, chronic fatigue, snuuk (sneaked?)up on me. Think I'd better be brief. The clinker, (for me) is that most of us don't "just" (evil word, that) have PD. Using myself as an example, or guinea pig, the other Dxs are Fibromyalgia, arthiritis, sleep apnea, chronic fatigue, severe degenerative disc disease, So let them watch, test, experiment, whatever. My route follows that which lessens pain, offers laughter, contains a bit of adventure (as much as I can handle) and enjoys humor!! If there is an interest I would love to post some of my writing for some chuckles. Any interest??? Here omes that sleeppinesssss
I like your suggestions on meeting this challenge. Wnen I had to quit work due to my PD I was really upset. I loved my job and found it very rewarding. I needed to be a contributing member of society if I was to be happy again. I found there are many volunteer jobs that are important and needed. I hooked up with a proggram to work withh metally challenged adults. IT was rewarrding.
I felt like I was involved in life once again. It helped me gain back a feeling of worth. It is easy to lose your pride and self-worth when you are battling a disease and feeling worthless. There is always something or someone that we can help in life. No matter how bad it gets there will be a pert of us that still works so that we can contirbute. We neeed a reseon for being., Iif we search within our limited selves we can find a plcae of importance in life once agian. A place that neees what we have left to offfer.
Someone once said, "To have a complete and happy life we need: Something to do Someone to lvoe Something to look forward to .".
I love the joke!! Made me laugh out loud! I have a joke. It is the only joke I could ever remember and even after getting Parkinson's, the joke is still in there.
"Why don't Witches wear underwear"?
"So they can grip the broom better"!
Tee He He! !
Conjures up such a visual. Maybe that's why I can't forget it!
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