There are people I know who just frustrate the hell out of me! Always assuming that they know what's best for me, but never really taking the time to understand the disease that is now Me. I call them the non believers. Those who shake their heads in understanding of my illness, but still, somehow, pretend there is nothing wrong with me. They chose to ignore all those changes in me that are so blatantly obvious,and want to blame "Me" for all my new faults.
When given more than one task at a time my mind will shut down, don't know why, can't stop it, so when I ask for something to be repeated I am lazy and don't pay attention. When I stumble while walking, or show up for an appointment with my sweater inside out and buttoned up wrong, I must be drunk or drugged up(close). And when something is found broken, out of place, disconnected, torn in pieces or found on the road dead all eyes turn to Me, assuming, of course, that the drunk, drugged up lady, who is lazy and won't pay attention is around, making it so easy for all those idiots to find fault and blame. "Blame Her", I hear them say and I want to scream at them,"I AM Not an Idiot"! But, I stop myself, remembering that it is I who am surrounded by idiots and they simply do not understand!!
My Parkinson's Disease not only changes the way my brain functions but also seems to touch and infect all those "non believers" who surround me! "Night of the Living Dead", "Must eat brains, mmm, brains".
Jupiterjane
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jupiterjane
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jupiterjane ,i hear u,i made myself a teeshirt that says: i have parkinsons,whats your excuse?,secondly,even my kids dont get it!cause sometimes im good and the rest of the time frozen solid,i seee it as a mission to explain 2 the masses what pd is,and educate ,i think my next tee will read:what u staring at?didnt your mama teach u manners?
KEEP smiling it wil confuse them all ,and remeber ,u r a person ,not a sickness dont let it define u kick it in the ass
I love that teeshirt message! Thinking about mass producing them? I think you would have a lot of buyers.
I think you are not alone . People do not understand the complications of PD and all the little problems it brings, put all those little problems together and some days it can really get on top of you. as for multi tasking it is difficult I have had times where I try to do too much and my brain shuts down (like an electrical overload)
You are not alone dont worry yourself what other people think.
Boy do I hear you, I am at the point of not wanting to go any place because I am sick of the statment YOU LOOK GREAT. I was always the funny guy and the one peoplecalled when they needed something, I am not that person any more, I can't even spell words or remember things.
I understand your frustration, I get that all the time. It's as if I should look terrible because I "have" PD. However, I was guilty of the same mindlessness when I was well. So I understand that they are just trying to be "NICE". I believe that stress played a major role in my decline and I am keeping it to a minimum, but not getting angry at well-intentioned empty-headed comments. By the way you look marvelous Darling!
you guys and gals know all the code words,right u look great=means omg she looks like shit,thank g-d its not me,i have a friend with lupus,shes on steroids we always greet eachother with,wow u look great ,no u do u lost wirght right?ulook so good,do u r feeling better?right?thats what people wan 2 hear,parkinsons does not equal blind ,i have a mirror i know what i look like dont even patronize,we r still intelligent,,i have great answers to oh u out on some wieght,it goes like this 1.ive done skinny 4 45 years ,im trying out fat now.2.ive sucseessfully battled anorexia 4 5 0 years .happy holidays 2 1 and all and may this coming year bring us the cure.hang in there.
Oh my how i could go on people do not understand and i have said many times i wanted to say doesn't anyone have manners we should produce a line of clothes that are easy to wear and say things we all think but probably shouldn't say but then again none of us should be going through this. Multi tasking forget it its overrated. I say now u decied. Went out to hear some friends play the other night as the night went on my meds wore off i went out the side door i walked in proud snuck out side door embrassed because i could only shuffle and hope i made it to the car before being thought i was drunk.
That's okay, we can all relate to your drama! PD does suck, BIG TIME! And I don't care where you are or what you're doing, or who you are with, when those meds wear off, I swear you can feel more and more eyes upon you and you begin to hear the whispers and all you want to do is disappear. Maybe we should create a little dance to go with that shuffle , we could wiggle our butts, shuffle a little, raise those middle finger in the air and head on out the door! Ha!
Oh Lord have mercy, I could knock a hair lip on all the people who say with surprise on their face,"You look so good!" SMACK!! No I have not grown a hairy mole and a humpback since you've seen me last, I look the same. It's amazing how people even hesitate to sit next to me because the glass or fork I hold shakes. I want to say "I sat next to your boring ass for years and listened about your kids, about your bodily functions, and your cat and you don't want to sit next to me? SMACK!
I was diagnosed with Parkinson's in June of 2008, a few weeks later I was also diagnosed with a rare neuromuscular disease.And life has sucked ever since
Some people do say "you look great" because they don't know what to say or they really mean is"you don't look like you have Parkinson's". I always say either"Well, I guess my medicines are working right now like they are supposed to" or "I wouldn't be here if I looked bad". Then some walk away because they think I can't have a nice conversation about other things or I've left them speechless. At my exercise class, I heard one lady say I looked like I was drunk and she asked another lady who had spoken to me earlier, did you smell her breath? I was floored at the time and asked "what did you say?" She didn't answer and walked away. I let it go but I shouldn't have but it wasn't the time or place.
Jupiterjane i couldn't agree with you more about people and their observations of us with PD. Just because I am able to attend a function and don't fall over something, or speak normally without my hands flailing, they assume nothing is wrong with me. If I refuse an invitation because I am not up to socializing, I am constantly asked what is wrong. What seems to be missing in the minds of these people? PD just doesn't "go away",and sometimes I get snippy retelling the same people the same story over and over again. Do you have a great "one liner" that might sink in? You are quite clever and if anyone can stop these people in their tracks, it's you. Please help if you can. xo jenny
I can relate to all the above comments. I tend not to go out much at night because usually this is my worst time and because people do not understand how I can change in the blink of an eye. Surely the Parkinsons UK Awareness Campaign should have addressed some of these issues. I have yet still to see any reference to it in my area. I think the T shirt idea is great. I often think of walking round with a sign round my neck. How do we get the message through to people? If more people nderstood the issues involved with having Parkinsons, it would make life easier - at least for me. Perhaps we should hand out leaflets?
Court, I don't know why the Awareness Campaign doesn't do more in this area, Perhaps it is because there are so many symptoms of Parkinson's and it seems we all experience these signs and symptoms at different times and to different degrees. Maybe a T-shirt we could wear underneath our "going out in public clothes" could read, on the front "Dr. Jekyll' and on the back ,"Mr. Hyde". At least that's how I feel at times.
Maybe we can come up with some ideas to raise the Public's understanding of Parkinson's Disease. Perhaps some television spots with celebrities talking about P.D. I don't think I have ever seen any of those.
If you take a look back at some of my questions and blogs, not a happy task, you will see that a number of people on this site raised the question of Parkinsons Awareness, or rather lack of it. After a good initial response, we could not get enough people involved, so had to let it go. The public do not seem interested, nor the media. Did you,for example know who the face of Parkinsons is? I didn't, but was told it is Jane Asher
She was an ex girlfriend of Paul McCartney and bakes cakes. She was also an actress, but does not appear very often nowadays. Bakes some very decorative cakes, and celebrity representing Parkinsons in the UK, I believe.
Recently watched a documentary about sloths, they poop ONCE a week! It was very entertaining and educational, worthwhile sanctuary trying to save a wildlife species--we could learn a lot!
I also find it hard when people say I look great. One answer I give is, "Well I wish I felt as good as I look.", which is the answer people will be getting today! People probably think they are lifting your spirits. I find it puts more pressure on me to behave as though I AM feeling great, and today that is going to be hard to do.
I was told that by a NEUROLOGIST at a Hanukkah party the other night! I said "wait until you see me dance." I usually said while doing a Carol Channing/Judy Garland impression "Looking good is what counts, right?" haha
I love the T shirt idea and would wear one. Business/fundraising idea?
I really mean it when I say " You look great!" It's great to see you out and about! I also wish that my husband felt as good as he looks, but I know he is suffering. He tries to go out with me and do the Christmas shopping, but he just doesn't have the stamina--but he tries and I appreciate that! Twenty-seven years (27) since his diagnosis and we continue to learn more ways to cope with PD. Stay positive! Wishing you Happy Holidays!
Hi, I was diagnosed with Parkinsons 5 years ago and decided then not to take any of the drugs developed for Parknsons. I am a Yoga teacher and teach 8 classes a week. I try too follow a healthy diet that includes lots of fresh veggies (lots of Kale, spinach and bright colored vegs also) I stay away from all processed foods and sugar. So far, so good. Walking and using big arm and leg movements helps as does fresh air. Whenever I get sad I realize that my life is good and there are always those less fortunate. I have also tried Cannabis butter on my toast, and it certainly helped my shaking, and my overall mood.
Oh! that sounds wonderful! I miss Yoga. Before becoming ill I walked 3 miles a day and did Yoga every morning, I ate healthy, didn't smoke or drink and still...I have tried to incorporate Yoga and the Big movements into my life but because of my muscle disease exercising only makes my muscle disease worse. I envy you though. Oh! and the cannabis butter sounds divine!
I used to teach step aerobics and a free-weights and mat-work class (total body conditioning)--total of 3 hours a week of teaching and pushing my students (and myself). I had to stop teaching because of the PD--I fell and got a herniated disc, and I had to take off from exercise in order to heal. By the time I was better, the PD symptoms were so prominent I couldn't do step any more bkz I'm afraid of falling off the step, and my fitness had declined dramatically.
I'm convinced that the exercise suppressed my PD symptoms for at least a couple of years. It's just so hard to get back to the level of exercise I used to do. I am going to try some of what you do. Thanks for the suggestions.
I am so sorry for your discomforts. As a yoga teacher I approach each practitioner seperately. What that means is I would listen to your physical limitations and modify the yoga postures to accomodate you. They may seem like "baby movements", but you gradually find more range of movement and begin to build confidence. The style of yoga I recommend is called Viniyoga and was founded by Gary Kraftsow. He was one of my teachers. Keep Moving.
I like being told I look great. Especially by people who don't know I have PD. But even by people who do. I usually just say "thanks." But if they want to know more, I tell them that I exercise almost every day. And then I do.
I was diagnosed with PD a few years ago at first i thought i can deal with this as my PD progressses i find dealing with it sucks a few months ago i stumbled onto this site and and had a good laugh one i hadn't had in a very very long time so i signed on i just wanted to say thanks and MERRY CHRISTMAS and HAPPY HOLIDAYS!!!
I too have experienced much of what you are saying. I was put on medical leave (was an RN) because I had to ask questions about something that I knew perfectly well how to do the day before, was slower in reaction time and had to have doctors repeat phone orders. I have had to go on disability which greatly reduced my income as a single mom.
I have a neighbor who is bound and determined that I am an alcoholic, before diagnosis and meds, I did have slow speech, was exhausted and in bed a lot, fell all of the time and dropped everything. Now, even knowing why, she will not speak to me, does not allow her children around me, etc. I hardly ever drink, but when I told her I had PD, she said the drinking had to cause it! She is a Bible totting "Christian" who wants to judge. Funny how far "Christians" have come from where they were suppose to be, not to judge but to help.
I still loose my balance, sometimes I fall and cannot get up without assistance. Sometimes I cannot retrieve words, sometimes I shake and my right foot drags. Very few people, even family members want to educate themselves on the illness that affects me. I have a few good friends who do care and I am thankful for them.
That's so true Susie. Before I was diagnosed I thought Parkinson's was just tremors. Now I know just how much it effects every part of your body and how it just keeps taking. My husband is the only one who knows every bad thing I have as a result of Parkinson's. I read him these questions and blogs and we've both learned a lot from all of you.
Yikes! And we've all heard the mother-in-law jokes ... mine recently told me that she doesn't understand why her mother "got" PD because her mother did not have the "drama" in her life that I have experienced with my parents & children ... yes, it is the STRESS in my life that has perpetuated the PD ... obviously, her mother did not succumb to stress or drama or emotions, so WHY did she "get" PD?
If stress was such a big contributor to PD you would think more people would be diagnosed with the disease. This is the most stressed out, uptight, wigged out society, and it's just getting wore! I believe stress plays a big part in PD and I know when I am under stress my symptoms increase, mmm unless "Woman develops Parkinson's Disease through Mother in law stress"! Now that I can believe! Perhaps that is what happened to your Mother in Laws mother!
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My husband is the only one who knows every bad thing I have as a result of Parkinson's. I read him these questions and blogs and we've both learned a lot from all of you. 
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