I call my PD "problem" and sometimes my "condition". Neither of these seem right. I was just wondering what others call the monester that lives within us?
How do you refer to your PD to new people? - Cure Parkinson's
How do you refer to your PD to new people?
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purelabor
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63 Replies
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I say my "thingie" to people who know. When I don't want to go into the whole history with someone i dont know, but my shake is obvious, I say have a benign tremor and move on.
Oh yea, hee hee! You made me laugh.
I have a maltese (8 pounds) service dog and people walk up to me and ask what he does. I tell them he works for me. I have Parkinson's Disease.When I freeze, he gets on my feet and begins digging and somehow, I begin to move. I am also hooked up to a monitoring company and if I loose my balance and fall and I unable to get up, he will go and press a button. The monitoring company knows, my dog is asking for help. They will call and if I can't answer, an ambulance is sent. Please don't feel bad about what others think. Most people are interested when explaining that PD can hit anyone, teenagers as well as the elderly. You don't have to have a relative to get it and it is not contagious. I believe it takes all that we have to fight this disease. I was diagnosed in 2004, but began mild tremors in 1987. at that time I was told it was my nerves.Life is too short I have had a stroke and paralized on my left side, I worked very hard and it took a year to get 99% back. I will not give into PD and I will fight this too.
I hope my answer helps you. Everyone is different , and when you feel like saying what it is, you will. Just remember you have PD it does not have you.
Margie
I have no problem saying Parkinson's, I just don't want to wear it like a skin. So I just say my problem and that seems to work. Really I quit caring what some people think. I guess I have a live and let live attitude. I was raised around an uncle with PD and it never bothered me.
I guess having a pet name lessens the effect on me. I know I will not win this, but I will never give up the fight.
For those I want to know, I simply tell them I have Parkinson's, (leave off the "disease"). I particpate in the sport of bowling, belong to two Senior leagues. The tuesday morning league has 28 teams of four members each. Early on, in each league, I told my team-mates that I have Parkinson's, to explain my declining scoring average as well as the tremors and other symptoms. Within a few weeks the word had spread throughout the league and many of the players either asked, (tactfully), or let me know in other subtle ways that they were aware and were concerned, No-one was anything but kind. One of the advantages of socializing with Seniors is that most of them are, themselves, facing physical or medical problems and are not usually patronizing nor critical of others.
Hi ronn
How are you getting on? Like you, I just tell people if I need to that I have Parkinsons - never use the word disease - and if they ask, tell them how it affects me. If they don't ask, I just change the subject. People I know, know how it affects me and accept that I have good and bad days. I am just me.
Sue
Why don't you use the word disease?
Because I don't look on Parkinsons as a disease. Don't ask me why, but you don't add disease when speaking about cancer, MS, Diabetes, etc. so why Parkinsons?
So I suppose its kind of a convention thing. But perhaps it is because we all know cancer is a disease. It is never anything else. Whereas Parkinson is someone's name so one could be referring to Parkinson's TV show or anyone or thing with that name.
For me PD is defiinitely a disease At least my ease is dissed for sure.. Lol
I don't see why we feel the need to tell anyone.
Unless it is in form filling or looking for sympathy.
If I am outside and over balance I just comment about taking too much Gin.
Occasioanlly raises a few eyebrows
Personally I dont care a Monkey's Uncle what any one thinks.
Espo• in reply to
oldtyke- If you really believe the only rationale for admitting you have Parkinson’s is to facilitate “form filing” or to solicit sympathy, I respectfully suggest that you revisit the question. And when you do, consider all your friends and loved ones who, when they first noticed your symptoms, were genuinely concerned about you, and interested in what they might do to help. If you have no such friends and loved ones, getting out of bed in the morning must be difficult. Like several other respondents here, when it comes up I candidly refer to it as “Parkinson’s” (or "Parkinsons" - the community is still undecided if it is to be possessive or attributive), which is perfectly acceptable shorthand for “Parkinson’s (or Parkinsons) Disease.” As for your joking about “taking too much gin,” If you would rather people think you are drunk than that you have a chronic, progressive, idiopathic, incurable disease, that’s certainly your prerogative; however, it’s not the choice many of us would make.
• in reply toEspo
Obviously you take life too seriously
Espo• in reply to
And you are the Baron of Badinage? If you are ever stopped by law enforcement for a moving violation it would behoove you to be more serious than jokingly commenting about “taking too much Gin.”
• in reply toEspo
To be quite honest with you Sir I am tea total so no worries over being stopped for drink driving.
I refuse to take my PD seriously, and live as normal a life as possible. I like to see the funny/sunny side of life, not the illnesses from what I have been dished out, but what I have been given in life that is good.
If I can make a joke at my expense which just might make another person smile, then that day I reckon, I did OK.
Susie01• in reply to
Don't want to make this such an issue, but my gait, slurred speech and falls had people thinking I was a "drunk". Nothing was further from the truth!
I had a neighbor who would no longer allow her children around me and told all sorts of things to other neighbors after I had fallen and could not get up.
I also had an employer give me a sobiety test because they thought my tremors were DT's. Even though I was not drinking, they treated me terribly. So I do tend to take it more seriously.
Its Parkinson's Disease or sometimes just Parkinson's from me to those don't know else just PD.
It depends on the person/people to whom I'm talking - if it's a casual contact I probably won't mention PD at all. It all depends how I feel. I normally introduce myself by giving my name & telling people upfront that I have Parkinsons (not disease - everyone seems to know). Then I play it by ear as to what happens next. I've never had a bad reaction - most people want to know more about PD or tell me about people they know who have it.
I don't dwell on it & I never apologise. So far I haven't joined a support group as I see myself as me a person in her 60s who happens to have PD. I do find 8 yrs after dx that some of the symptoms are more pronounced & less controllable so an early explanation is easier (for me).
Why not join a support group? They are great. If you have a question or concern, someone usually has a good answer or knows who to ask. They also usually have the latest info on research, developments, diet improvement, reduction of symptoms, what medications work best, who are the best neurologists and movement disorder specialists near you, and info on events coming your way. You will make friends with the same problems, and probably learn a thing or two as well. If it sounds like you are missing out on lots; you are...
I am a Pastor, Hospital Chaplian and Direct the choir at my church. When I get over tired or extremely stressed all anyone' has to do is watch me and its evident that I have something going on. When ask I simply tell them . For the most part I receive positive reactions and when it's appropriate most people will ask me to tell the more about PK . With few exceptions most have a relative or know of someone with PK.
I am living life to its fullest and will continue to as long as I'm able. I am not dwelling on what life will be like tomorrow . I only am concerned about today. I can't take this speed bumb out of my road but I don't have to dwell over the fact that its part of life. I'm extremely blessed. I don't have many physical problems per say. When they occur I'll deal with it then. I continue to take my medication, excersise, eats well and live and play the best I am able.
If we can help educate others about PK and give them the opportunity to see we are able to function and be useful to others more people will become aware of our challenges. I encourage those I share with to speak to their healthcare givers and become as informed about PK. I also ask them to make a donation to Parkinson's Research and write to their representatives in Wash. D.C asking them to help fund research and find a cure for PK. I except a cure for PK will be discovered in my lifetime. I may note be the one that decides how long I live, but I am the one that decides how I will live .
I just tell the truth saying, "Oh by they way I have Parkinson so if I seem a bit off my game I'm fine, so lets get this done or lets get moving or??" I try not to make PD bigger than it needs to be. This works well for me. Kadie
I have been saying Parkinson for the last 3 +/- years. It's not a problem gettome
i guess i am too straightforward if i am having one of my days when i am not doing so great and i meet up with someone who doesn't know me or what my world is and i see them giving me the once over i just say oh it is just parkinson's disease don't worry u can't catch it
for my fiiends after i was dx i just told them i was blessed with parkinsons, and i guess better me than someone else
Yes, I almost always casually say I have Parkinson's a chronic condition. Then when I stretch and twitch and get up and wander around the room, I don't have to explain!
This is a very interesting and valuable discussion. I say I have Parkinson's. I don't use the word disease because I don't think of myself as having an illness. It is a little awkward when someone who hardly knows me sees me limping along with my cane and says something like " What happened to your legs?" Then I just joke and say,"Oh these my legs. They are giving me trouble."
Thank you all very much, sometimes I get a little down and ate to keep saying what I have. But you all have shown me that you can talk about it and I am going to try to have a more positive attitude about it, Once more, Thank You.
my 3 yr old grandson calls it "the parkie " bless him he understands even at his age that i have to wait for meds to kick in sometimes so i can join in with things and often gets excited and runs to grandad saying nannys tablets are working the parkies gone .
Kat00• in reply to
Kids. they sure know how to say it like it is! What a joy your grandson must be to you!
• in reply toKat00
they sure do . he brightens up my darkest days hes the light in my life xx
Joanne_Joyce• in reply to
That is so precious! Aren't grandchildren a blessing.
• in reply toJoanne_Joyce
they are indeed .the inocence is great the way they look at things and its great to get hugs and hear them say i love u nanny isnt it ,
After not wanting to talk about it initially, I now see questions as an opportunity to educate a very uneducated public about PD, but only if they ask...
I am an RN, knew very little about PD except from a friend who's father had PD. I have ordered booklets for both friends and family members and also for medical professionals in regards to PD from NPF, they provide them free of charge.
I had to change Internist due to insurance. The only doctor who was taking new patients is obviuosly poorly trained. After a couple of visits with him, I asked what if any knowledge he had on PD, he admitted very little. I will be taking pamplets to my next visit.
I believe this massive under education in the medical community is why it takes the average person so long to be diagnosed and treated. I saw three neurologist before I was diagnosed, by that time I could not walk without falling and had bilateral tremors. I had diagnosed myself, but needed an MD to make a diagnosis!
If you feel comfortable, help educate someone! Funny thing is, my family is the most resistent to learning about it. I think they just do not want to accept that I have a disease.
That's the same with me Susie, my three brothers haven't bothered to visit me in 12 years and two of them live just 30 odd miles away. My father had died before I got it and ny mother, I feel never really accepted it before she too passed away. Friends from the past never surface either. Perhaps your last sentence hts the nail smack on the head, "they just do not want to accept that I have a disease." - which makes me think we should omit the word "disease". One could say, "Listen up, I have Parkinsons - it's not a disease you know!"
I am not sick, I want to live a normal life, but I have a problem, and that is PD. Sometimes I have to mention the name of my "enemy" to explain my reactions. My friends appriciate this. They have learned a lot about PD from me. (Most people know nothing about PD). I never told them of my PD to get sympathie...,because I do not need symphatie. . It`s more difficult to inform people I did not know so well, especially young people. I use to say that I tremble because of PD. Most people accept this as an explanation. .
*excuse me - my english is not up to date.
Poppi,
your English is just fine - we understand your message & that's the important thing.
Angela
Interesting discussion. I have Parkinson's and I don't use the word disease either. I don't see it as a disease but a chronic condition that will eventually get worse. The word disease makes folks think you are sick and when I was first diagnosed, I thought I was "ill". But it didn't get better but I didn't look sick to anyone. So I dropped the disease word and never use it. It's been almost 6 years since my diagnosis and somedays I don't show any symptoms but feel them on the inside. I have been accused of being drunk at times at my exercise class but was just having an "off" day. So everyone, call it whatever makes you feel comfortable, it doesn't really matter in the long run of things. Keep moving and keep some humor in your life!
It just occurred to me that the pastor (art4u1950 ) didn't use PD but said PK instead. I think that is a good idea since the D stands for disease. We are so used to talking about PD but maybe we should change to PK instead so we can avoid the word "disease". What do others think?
I've no idea what K in PK stands for. PD is a disease so why not call it what it is? Without the word disease you can't tell what is referred to. If I didn't already know and somebody said to me that they had Parkinson's. I would say you have Parkinson's what? As Parkinson is a person's name you need to add the word disease to distinguish quite what is being spoken of. I suppose you could use illness or malady or condition. The word disease may imply something communicable as CJ49 wrote earlier but that is only because the word is misinterpreted. Instead of finding a new word that is less accurate, why not explain that PD is no such thing.
I don't know what all the fuss is about Pete (not having a pop at you by the way). The person who has the illness just refers to it as it whatever suits them. Most people I've come across don't know what Parkinson's Disease, PD or Parkinsons is anyway. Some said, "Oh, it's that fing Ali got, can't imagine someone so well and fit getting somefink like that, can ya?"
Just out of curiousity, I looked up on some medically defined diseases and this came up and made me smile -
"Parkinson's disease a slowly progressive form of parkinsonism, usually seen late in life, marked by masklike facies, tremor of resting muscles, slowing of voluntary movements, festinating gait, peculiar posture, muscular weakness, and sometimes excessive sweating and feelings of heat."
2 points from this:
[One] Just be an awkward rogue devil, when asked, "What's wrong with you?" Respond with, "Parkinson's disease a slowly progressive form of parkinsonism and I pray you not ask what "parkinsonism" is or is not, because I do not know.
[Two] I love this term, "festinating gait" - Have you tried oiling it? Also, "masklike facies" - Is this faeces taken on the form of a mask? Lol. 
...
I suppose my disenchantment with dropping the word disease comes from the UK's flagship PD charity that used to be called "Parkinson's Disease Society". The charity hired a new CEO and under his direction the PDS underwent a re-branding exercise The name was changed to Parkinson's UK (or PUKE for short lol). I remember speaking to a few people about the name change and was amazed that people thought it an improvement. I just thought it pointless and really a bit feeble.
Then I was told that the name change had cost £46,000 (due to changes to stationery, you know headed notepaper etc and all the things relating to the website etc. etc. etc.
At about the same time my 2 daughters did a fundraising thing at their school and the PDS was nominated and approved as a suitable recipient for funds raised. My daughters contribution raised about £39 from selling a few (quite a few) home made cakes.
I think they were very demotivated to discover that their hard work had been swallowed up many times over without any direct benefit to those of us with PD. I doubt very much if they will ever bother again.
Now if the re-branding exercise ultimately results in receipts for the charity increasing to be greater than the costs plus a bit more then it could be declared worthwhile. I suspect we are unlikely to hear one way or the other.
Good Gosh People, admit it to yourselves, it is a DISEASE! It is not normal function! As I worked as a nurse in diabetes, I worked to make it known that the people with diabetes were not "diabetics", but people with diabetes, We are People with Parkinson's, not just Parkies. We still have a disease but it does not define who we are! The ultimate job should be education regading the "disease" so few know about it!
WOW!!!
I don't remember such a lively debate on thise site. It is very exciting. The issues raised are valid whether to one person or many & are mostly being treated with respect & a little humour. Personally I don't think of PD as a disease but as a syndrome or a (health) condition. However the majority of people recognise the abbreviation PD so I use that. I'm a PwP on sites like this as it sums up how I feel & other users understand the acronym. I'm sympathetic to the views about name changing (rebranding) & the cost to fundraisers partly because I was head of a special sc hool where many pupils had Cerebral Palsy when the charity became SCOPE. This caused much ill-feeling amongst the CP community not least because they did not feel they had been sufficiently involved in the decision. I suspect that the merits of these changes will be eventually be judged by their impact on funds raised more than altruistic issues such as whether or not naming the condition, as in Spastics Society, stigmatises members.
Please keep up lively, entertaining & thought-provoking debate on this site if only for me - I find it really stimulating. Thanks to all contributors,
Angela
I sense that this thread is coming to a natural end. I expect there will be another good one soon.
I just say I have a progressive neurodegenerative brain disease that is incurable. Its sometimes called paralysis agitans but you may know it as Parkisnon's Disease. Many individual are affected different than others. Even though its the same disease there is a wide variety of symptons. Conversely responses to are treatments are different tool
• in reply toeh110575
The last answer might be a bit complicated for the ordinary folk in the street. The people in the supermarket know me as that artist girl with Parkinson's. One of my best friends introduces me as her shaky friend!
I have a small rescue dog who drags me around and makes me walk quite normally. I went out without him the other day and walked like a drunk. Everyone asked me where my dog was, not if I was alright!!!! Embrace your difference.
Someone once told me that if you were afraid or embarrassed to do something, then pretend you are a rock star and get on with it. It always works!!!
I say that Parkinson's is a syndrome. Diseases are transmittable. Parkie is not. Since producing a book of my poems to raise funds for Cure Parkinsons which was sponsored by my local Rotary Clubs, I have been invited to talk about Parkinson's. It really is amazing how little people know and the people I have spoken have appreciated the talks as most have relatives, or know people who have Parkinson's. One person thought that we would be happier if we smiled more. I then explained about the Parkinson'ls mask and said, "Just remember we are smiling inside."
No, diseases are not necessarily transmittable. Disease simply means you are not at ease. The word you want is contagious. Some diseases are contagious and some like PD are not.
When someone refers to PD as a syndrome they usually use the word Parkinsonism.and really means that a precise diagnosis has yet to be made. The choices being PD idopathic, vascular, drug induced, PSP (3 variants of PSP), MSA, HD, essential tremor, CBD, MS has some similarities and probably more.
Given that PD is second only to Alzheimer's in terms of numbers afflicted by a disease of the brain it is surprising how little people know even when as you say most people have some contact with someone afflicted by it. I suppose we all have so much to do, so many competing interests such that it's not until something very close does the priority of PD become raised enough to direct peoples attention.
I must say well done for giving talks to your Rotary club people. The idea of public speaking is something that makes me feel really wobbly.
Funny how we seem to find different things to call "it" in order to make ourselves more comfortable or accepting of "it". I refuse to capitalize the word parkinson's *with or w/o disease) as I feel that I am giving "it" power if I do. My name is capitalized, parkinson's is not, therefore, I am bigger or more powerful than "it'. Most everyone that knows me by now realizes that I have parkinson's, though many at work have said, "I just heard that you have parkinson's disease, I always thought that you had MS". One co-worker actually nominated me for some award at work and wrote a whole essay on how well I do my job and assist others & remain patient, all while dealing with MS. She came up and apologized to me later, telling me that after she submitted it, she mentioned it to another and they told her that I have parkinsons, not MS. So, I know that people are talking about me as in, "what's wrong with her anyways", which makes me uncomfortable. I feel like the elephant in the room that nobody talks about while I am there, only when I leave. When in discussions on Facebook, (I belong to fiber arts groups), for the longest time if I was talking about my difficulty in learning to spin, embarressed that after 10 years, I am still "learning", I would mention that I have a disability or a condition that affects my fine motor skills, but realized that I could not say out loud or in print that I have parkinson's without crying and having a emotional melt down. I just couldn't accept it or deal with it, even after 10 years of living with it. After much soul searching I realized if I did not accept it, I could not move forward, so now I force myself to call it like it is, only with a small p....parkinson's (with or without disease).
I just re read my post & realized how often I called parkinsons "it". It made me think of (now I'm showing my age here) "Cousin It" on "the Adam's Family" or was it "The Munsters" tv show from my childhood. Does anyone remember? He was the hairy little dude. I am laughing out loud, as now I see parkinsons as this hairy little monster dude...how fitting. So, now maybe I'll just tell people that I have a "cousin it" (still no capitals)...a hairy little monster that lives inside of me. They will probably think I've gone mad as well! Good...maybe I will finally be able to leave work, get disability & get on with following my passion in life.
LOL...nothing wrong with being a little naughty, as long as it doesn't hurt anyone else.
I refer to Parkonsons as a condition .
I have been asked a number of people (who I didn't know) if I had Parkinsons. At first I was embarrassed because I was always trying to hide the tremors. I felt they were intruding. After a while, however, I have come to accept it and always respond: "Yes, it really is such a nuisance". Invariably they know someone else who has Parkinsons and they just want to communicate.
A good attitude comes in handy.
Ken
Dallas
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