I would just like to know if anyone has had similar things happen to them. Before I was finally diagnosed, there were times that I was accused of having a problem with alcohol. I know there are a lot of symptoms with PD that could mimic a drunk, shaking hands, falling, slurred speech, memory gaps, etc.
I was let go from one job before I was diagnosed because my hands shook when I was attempting to draw blood from patients and co-workers had noticed my loss of balance at times. I also could not remember things from day to day. Never mind that I had passed drug and alcohol screens...
I had one "friend" who was so dead set that my symptoms were related to alcohol that the friendship ended when I told her I was diagnosed with PD. She refussed to admit that she was wrong. I guess this shows who our real friends are.
I have a neighbor who's father had PD, taught at a local University. He was let go because they saw his symptoms and concluded he was an alcoholic...that was many years ago, I am sure he would have a good case against the university if it happened today!
If you have had similar experience, how did you deal with it? On one hand I know I should not care what people think, on the other it has been hurtful.
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Susie01
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yes myidad cos i speak to him mostey on the telephone thoguht i was drunk as myi speech was sliurred
Until i was diaginosed iwth psp - a rare form of parkinsons
so as my family and friends now know my health problems are not related to drink or drugs but 2 Psp it has been a lot easier = but not much as i have lost some weight and look pretty welll- not like someone with a terminal illness
so if u r still working ir may b a problem 4 u btu i am retired and do not care whay people think anyway
when i fall vove routsid people are v noncerned and want to ensure i am ok
love jill
Hi, I carry a medical alert card with which says I have PD and I am not intoxicated.
What a great idea! I have never had a medical alert card. I am even thinking a bracelet would be a good idea, I will find out where I can get one. Being a female, I don't have a wallet in my pocket.
My sister has diabetes, when her blood sugar bottoms out, if someone does not know she has diabetes or the symptoms of low blood sugar, they would also think she was drunk.
i apprecialte your out look u shared on my on my blog. the roller coaster. as far as the alcohol question i stated in an other one of my blogs that if i had been stopped by the police they would have put me in jail because i would never have passed a sobrierty test. larry does have a great idea with the medical alert card. what is really sad my son also a nurse accused me of being on drugs because i would fall asleep sitting up eating dinner, this was before i had the dx. i still have some days that i
do this what hurt my son never apologized . the life with pd yea
It does hurt when people cannot apologize and admit they were wrong in their assumptions. I did have times when I worked very hard and the next day did not have the strength to pick my arm up off of the bed. This was after a bought of pneumonia. I never seemed to recover my energy, now I know it was the PD not the pneumonia that hung around!
At that point I did have a couple of "good" friends who insisted that I go back to the doctor because I was not doing well. They took me to the doctor, he just said that I was very sick when I came in and that it would take a long time to recover...Those friends are still with me! They are protective of me and angry at those who made the assumptions.
Yes, not the life I had planned but I know that it could be worse!
please answer some questions for me please since u are nurse. there doesn't /didn't seem to a definite test to dx pd. how did they figure u out. my doc said i was between stage one and 2 a 2 because i started choking and difficulty swallowing so i spent six months in speech therapy and i am doing better that way. but now that i sit and think i really don't know what to look for as far as change of stages what the stages are/ or what to expect
i have read so much but for some reason none of this has sunk in about the stages. help
The first list of staging I found was on WebMD. Also, on a previous question regarding staging, Jerabet had a post with a link to a site that went into a lot of detail regarding the stages.
Because PD symptoms can come and go early on, it is harder to diagnose. Also, not everyone has the same symptoms. I had been to three neurologist before I was finally diagnosed. By that point I had already diagnosed myself!
Retroscpectively, I had many signs for several years. There was the double vision which made me vomit all of the time, the exhaustion, memory gaps and then the tremors were almost constant, worse in the left than the right. Next, my legs started to shake, the falls started. Looking back it should have been obvious, but I was going through a nasty divorce and it was attributed to stress and asthma meds.
Then my left arm was flexing and extending uncontrollably! I had hallucinations of bugs and cobwebs everywhere. There was more, but I won't go into it all.
The diagnosis itself is personal history and also a neurological exam. After I had started on medication by the neurologist, I had a routine appt. with my internist. He checked me for all of the neurological markers, said they were all there even with the medication. I still have bilateral tremors but they are much better than without medication. Hope this helps, Susie
I wouldn't wait for your son to apologize; I would just forgive. We can't carry the extra emotional burden of hard feelings, as they will be displayed in physical symptoms. It was very hurtful the first time I stumbled on the bus and people looked at me with disgust, as they thought I was drunk. Now I have a flip open wallet with my "I have Parkinson's; I am not intoxicated" card on the top and my bus pass on the bottom. I have the Parkinnson card on the outside pocket of my wallet too. One time when I knew I looked drunk, I took out my wallet and showed it to the person next to me. Oh, all the bus drivers now know I have Parkinson's, but that is to my benefit.
Kids! At times mine make me wonder if an early death would be preferable than experiencing the grief they cause the wife and me... Drunk, I've been asked. But worse for some reason, I overheard a child ask her mother (in church), Why is he shaking? and the mom replied, Because he's scared.
Well color me ignorant, but how does one (as in one of us) get a medical alert card? I do feel that if I were stopped when driving--something I do less and less of--the police would think I'm drunk. I've thought of wearing a sign saying "I'm not drunk, just can't walk straight---or just have Parkinson's." But the shirt would get dirty and most people wouldn't think it funny. Would love to have something official to show.
I have felt like giving my medical records to all of those who have stuck to their thoughts that I had a problem with alcohol!
After reading the comments, I almost think a medical allert bracelet would be a better solution, I don't always have my wallet with me and if something should happen, the EMS, etc. would look for a bracelet before they would look through all of the cards in my wallet.
I looked at a couple of websites that sell medical alert bracelets. They do list Parkinson's as one of the diagnoses that should were medical alert bracelets. I am going to order one, the reverse side of the bracelet has your information on the reverse side, this site does the engraving for free.
Here's another site that offers free engraving. I tend to take that to mean that it's included in the price, since most people have a similar amount of engraving:
Also free wallet card and web site for entering your medical info/history. I didn't mention that the site that Susie01 gave also has those three things.
I'm not necessarily endorsing this site over others. I'm just looking around at the sites found in a google search for "medical id bracelets" (without the quotes).
I thought I would wait before getting a med alert ID bracelet (while my PD meds are in flux), but the limitation of printing 5 lines or so pretty much crowds out listing med names on there. Instead, I'm expecting to have one line that says "meds: see wallet".
So, at the moment, and based on the bracelet referenced in this post, I'd expect to have these 5 lines engraved (5 is their max, max 20 chars/line):
1. Full name
2. Medical condition (I would list Parkinson's Disease)
3. Emergency contact : my GP MD and his office's phone nr
4. my blood type (especially since it's a rare one)
5. "Meds: see wallet"
I don't have any allergies, so that frees up a line for me.
I would put my ex-wife as the contact instead of my PC MD, but her name and phone nr > 20 char limit (even with reasonable abbreviations).
How does the above list compare with what others here have done or heard about? I initially didn't think of putting blood type on there, but saw that mentioned on one of the sites' list of possible things to include.
Thanks for the info! I think it would be reasonable to put the added info if they can get that many lines on the bracelet. I am O neg. which is rare, universal doner, but must have O neg. good idea, I will check that sight out also.
My sister has diabetes and does not use a bracelet all of the time, friends and people at her work know what to do, but I am going to also get one for her for Christmas.
Just to add a statement that I also have the feeling of being drunk be it from the PD medication or PD itself or a combination of both. I sometimes feel I am in a boat in the ocean as it rolls back and forth. Besides being "foggy" in my mind I will get my feet mixed up while walking. I feel very awkward when this happens.
Yes Dennis, I have that feeling this evening, my head is swimming! My kids know that if I drop something I cannot pick it up off the floor because I will be dizzy and loose my balance!
I too have this same difficulty and have had more than my share of people looking askance at me when i stagger, or fall, or knock things over. (Or lose my balance when picking something up from the floor. Why add my "near impossible to understand lousy diction" and we have a package of symptoms bad enough to make you want to take up serious drinking!!
Then I'll need a medical alert card that would actually say "I'm drunk AND It is because I have Parkinson's!
All kidding aside, I feel truly fortunate in as much as I've been pulled over by police for minor infractions and twice lately here in SE Arizona, and in both cases I told the officers right up front about having P.D. Neither was ignorant enough to even ask me to do a field sobriety test, in fact one officer after asking me 4 times if I'd been drinking when I finally told him that the heat had me feeling a bit weak and a bit loopy, (subject for another blog!) and that it happens a lot to us Parkies...suggested to me that I might stop in a nearby Tucson gas station take off my motorcycle gear and have a nice cold bottle of water to drink! He was not only nice about the whole thing, but I took his advice and it most certainly helped!
just knowing u are not alone while haveing these weird feelings, that u are not an island is a great help to me. ur insight and thoughts u have shared with me have also been a help and i want to say thank u.
this is going to be a very busy week for me and with the holiday coming Thurs and us travel for a week holiday i will have to try and pace my energy . will hope that my common sense comes thru and i remember to slow down. on my way now to webmd to check out the stages as we had discussed earlier. since we last posted had a pd fall. went toget up from my chair, leg didin't go where i thought it would and straight down i went. nothing hurt than but now a few hours later major muscle pain and stiffness up right side of my back especially around shoulder blade what a wonderful way to start a mon. hope u are okay today will be looking to hear from you
I read the PD stages on WebMD. I'm mostly stage 1, with some stage 2 -- except that I don't have the bilateralism of stage 2. I'm on my 3rd neurologist. The first one did not diagnose PD because my symptoms were changing during the ~1 year I saw him. The 2nd and 3rd are struck by how much it affects my right side while not affecting my left side at all (that I or they can tell).
So, that list of stages is not one-size-fits-all (not that we particularly expected it, or variations elsewhere, to be).
For informing people of your condition out in public (police, hospital, EMT, whatever else), I came across this page from the National Parkinson Foundation that you could print, fill-out and carry with you:
Aside from the large letters saying "MEDICAL ALERT - I have PARKINSON'S DISEASE ... I AM NOT INTOXICATED", it also has space to write in whom to call, who your doctor is and other stuff. It also has info warning people of meds and medical tests that may be incompatible with PD.
I like the ideas of the card and the bracelet. Thanks for suggesting them and providing link(s). I'll look into getting at least the bracelet, since it's so much more likely to be seen soon by an EMT, doctor, etc. I don't know how much info is on the wallet-sized card. But, maybe it's also worth having. That document I pointed to may be complimentary to the other things, especially after the bracelet tipped-off those helping me that I have PD. I can't imagine the wallet card having as much info as the doc, but I'm still interested in seeing what it does have (esp since it's easier to always have with me than a sheet of paper).
> symptoms with PD that could mimic a drunk, shaking hands, falling, slurred speech, memory gaps, etc.
Being at stage 1+, I don't have many of these symptoms (no problems with: speech, memory, thinking; hand tremor seems to have stopped, which is surprising; not great balance, but rarely fall). The one time that I think others thought I might be drunk was when I tripped over a high curb when leaving a local baseball game. I didn't lift my right leg high enuf. It was an old, high curb, made before current standards were created. The foot caught the curb and I fell onto landscape bark. I heard someone say "What was THAT?!" in a way that made me wonder if she thought I was falling-down drunk. Then others came over quickly to help me up. The main helper then had a look like he was trying to assess whether I had been drinking (and was about to drive home). I just told him I have a problem with my right side, and that appeared to satisfy him.
Irony: I dislike the taste of every alcoholic drink I've ever tried. (That martini tasted like lighter fluid (based on how lighter fluid smells). My last drink was in 2006, the last year I played rec hockey. Usually, a teammate would bring in some beers to have while changing after the game. I would usually take one and drink about half of it just to be sociable. (Don't worry, in the 15 years I was in that league, I never saw anyone have more than one.)
I think this discussion has been helpful for all of us, thank-you for the additional information. When I was intially diagnosed, the doc did not tell me the stage, it was in his medical records which I received to file for disability, then I started looking for information.
I wish I could say that I had not fallen much, but with several episodes before diagnosis, my body was bruised and battered. On one fall I broke a finger, another with a broken rib and a laceration on my forehead when I hit the edge of a piece of furniture. I also had the "freezing" which is a pretty wild sensation. I was walking along, holding to one side of the wall when I stalled and then litterally "flew" onto the floor...
Another approach to this could be to become a vocal advocate for the PD community! Talk about your Parkinsons BEFORE people decide you are tipsy! Wear an awareness t shirt, put a sticker on your cane if you need one, or your walker, or even your car window. Some PD orgs have buttons/badges, common ones are the tulip, which can be a start to a conversation. I know this problem well, I lurch a lot, my walking is poor, and sometimes I am a bit slurry. It is easy to lose confidence, but you can take it back by being a little proactive, if you are comfortable with doing so. People need to know more about what PD is so they don't make these kind of judgements. As PwP we can help with that!
LOL.. boy have I got a story for you... before being diagnosed, I thought I was having a brain tumor or something, couldn't put one foot in front of the other without staggering.. So I got this brain storm that I'd forgotten how to walk, now I run a mobile home community, with 117 homes and 4 times that many people, I would get up at 5 am and walk around the park, several of my "Resident's" took it upon themselves to write my employers that I was drunk at 5am, staggering around the park, was drunk when they came in the office etc, etc.. they sent at least 15 letters attesting to the fact that I smelled like booze, couldn't talk, write, walk.. my employers have known me for going on 20 years, that's how long we have worked for them, so they knew I wasn't a drunk, or at least the last time they saw me I wasn't, so they paid a pop visit, low and behold, I am not drunk, but they realize I am very sick and something is wrong, so a heart to heart happens and they convince me to seek help with a neurologist.. 6 months later, I am diagnosed with Parkinson's.. I took "Joy" in letting these idiots know, that I wasn't a drunk, but very sick.. It's amazing the conclusions people jump to, when they do not know you and it's extremely sad, that they won't admit they are wrong.. I'm really "Parky" now as my husband has been diagnosed with terminal cancer, the stress of taking care of him makes my meds not work right, and now I am amazed at these same people, taking the time to come and help me or offer assistance where they can.. Funny how things turn out..
Maggie, I also had people saying they smelled alcohol on my breath, I think their minds had to conceive that to put me into a catagory. I do have a glass of wine, usually with Italian food, but I am in no way a user,
It is good that you had an employer who cared enough to have you seek out a diagnosis. I will say that initially I was glad to finally know what was wrong with me, then I cried...
Absolutely Susie, when he told me what I had, I said "Thank God it's not cancer" then got in my car and drove down the road, about 5 minutes into the drive it hit me, I pulled over and cried my heart out.. now tho, I'm sort of cie la vie with it, as I progress and get stiffness, stuttering etc.. I pray it doesn't get any worse. but like MJF says, "don't let that bus hit you, get up and do something about it!" Great advice.. Hugs! and Happy Thanksgiving everyone (:
I was so debilitated by the time I was going to the third neurologist I had all of the falls, hallucinations and could not turn my head without vomiting, at one point I thought that I was having a seizure. My whole body was sore and bruised.
By the day I went to the MD I was fairly lucid but could hardly walk and was shaking all over. I had a friend who's father had PD drive me the 2 hrs to the new neurologist. I cried on her shoulder. The MD knew I had already figured it out, which was why I had that particular friend take me.
She and I have been friends for 27 yrs. I know it was hard for her to see a good friend going through what her Dad had experienced. I did not have the money or insurance to see the MD so she paid for everything. So there are some people out there who are advocates for those of us who have to deal with this.
Hi Susie, you certainly find out who your real friends are when you get this affliction - guys I had worked with for more than 25 years on many contracts dropped me like a hot potato once my symptoms started to be noticed by people we contracted to - some of them began to look at me as if I was on drugs or alcohol, but my bosses did not feel it would be okay to admit to having Parkinson's.
Anyway, my jerky walking with a stick style these days does not seem to lead people to thinking that I am drunk, but they never realise it's Parkinson's until I tell them. For example, one rep for Sky TV spent some time trying to sign me up and at some point I told him I had P. He asked several questions about it then told me that when I had walked from the door to my kitchen table to sit down, he thought I had been in a car crash and had permanently damaged myself.
Another time when visiting the area where I lived years ago, I bumped into an old friend on the street. He looked at me and the walking stick and asked if I had arthritic knees - I told him it was P and with a look of pity on his face he said "Oh no, I am so sorry." That did not help my mood that day!
The best advice I could give to anyone with P is tell people about it. I tried to hide my symptoms from people at first, but only succeeded in raising my anxiety levels and finding it near-impossible to stop shaking or to use my left side - so I can see why some people may have thought I was hiding a drug problem. Now I go straight to the point when meeting new people - I apologise in advance for staring and shaking and briefly explain Parkinson's symptoms. This approach seems to work with most people treating me more like a "normal" person, and my anxiety levels are way down because there is nothing to hide.
The other way to view it is to say to yourself "Does it matter what people think? NO!! Only your true friends and family should be able to affect your feelings, everyone else outside of that are entitled to their opinions but don't give them any emotional weight. Most people make assumptions based on little or no evidence so win the prize for faulty reasoning and conclusions. Lessons from this for us? Be like Sherlock Holmes who always gathered evidence before pondering a problem, because assuming without evidence is guesswork and "I never guess Watson!" So when I see people eye me up and guess what is wrong to themselves I award them the prize and find it amusing to wonder what nonsense they have come up with. And being amused and laughing about it means they have done me a favour and improved my day.
Sorry I have been so longwinded but I really felt for you and know the hurt you felt - yes when those guys I first mentioned abandoned me it hit hard - but with my new attitude the hurt has gone, and I can even forgive their ignorance.
Try to be mentally calm and emotionally calm and all symptoms of P lessen, and life becomes worthwhile again. Good luck with your life Susie, and thank you for posing your question and allowing me to share a thought or two!
Thanks so much for your response, I like the Sherlock reference! A few days ago I posted an Elanor Roosevelt quote on facebook, "Do what you feel is right,
for you'll be criticized anyway".
I does hurt when people have misconceptions about us, but information will open the eyes and ears of those who really want to know.
I overheard someone comment "really, at this time in the morning" when I fell over the cobbles in my local market. Just wish I'd had the courage of others and told them abaout PD. Is a medi bracelet the answer?
I know the humiliation you feel, I would love to run out there and educate everyone about PD. The folks who think we are drunk seem to be the same folks who think that the "drinking" caused you to have PD! In rebutal to those people, I looked at the studies, heavy drinkers have less of a probability of getting PD, social to moderate have more of a chance and those who do not are even higher likelihood. I really wanted an apology from the person who called me a drunk and spread it through my neighborhood, it was very hurtful, never got that apology...
I think the bracelet is a great idea, there are times that I have fallen and cannot get up due to weakness or tremors. At least if it were in public, they would see the bracelet and know you had PD and attempt to help vs. just leaving the sloppy drunk on the sidewalk!
I do have balance and speech issues, it is so much better for the people around me to know that I have PD and they are much more patient and helpful when I have issues.
If someone had seen me yesterday and not known I had PD, I could see how they would think I was drunk.
i was in so much pain at an outdoor activity couldnt find my husband to take me home and a women who knew me was pointing and telling other people oh no she is so drunk she can hardly walk.i said no its parkinsons.she found my husband for me and took credit for helping (the poor thing)
I don't drink but I was purchasing 6 pack of beer for my son who was mowing my yard and was refused service because I looked as if I was intoxicated! The lady was rude as i tried to explain. She was doing her job but it was a little embarrassing
I actually found this sight while asking the question as to what could be causing to walk as if I were drunk. I have had PD for many years, but this is a first for me experiencing the walking as if drunk. I also have spinal issues in all of my spine, so until I see a doctor I will not know the correct cause, since I have found on line, it could be either problem I have that is causing this.
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