advanced observations involving pwp....pe... - Cure Parkinson's

Cure Parkinson's

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advanced observations involving pwp....people you know you want you to be well

beehive23 profile image
38 Replies

folks without pd , friends etc....want you to be ok soooo much they convince themselves you are ok...so they can move on...at pwp detriment...case in point....im buying new car....my friends that i haave remaining.....say "oh so your doing great" your buying new car ...answer by me..... with pd...."i need a new car with drive assist to help me brake and steer and comfort adjustments at push of a button because my right side dominant pd freezes my gas and brake pedal foot which travels up the nerveline into pain in the hamstring and shoulder etc........ driving a car/truck...without the new tech means i lose my license...with new tech ie: auto brake etc stearr assist etc. means i keep my dl longer without a wreck..a new car to me does not symbolize how great i feel or how i overcome pd it symbolizes how much more assistance i need to be able to drive.....it does not symbolize how great im doing... then i get resentfulll because they tell me how great i am when im about to lose my license using my current truck that is 2005...then i respond internally to myself that "noone gets me " it isolates pwp further....NEVER TELL A PWP THEY LOOK GREAT because were dying inside......stand up for how shty you feel ....its all you can do...LOOK PAST THE CAR...HANG TOUGH PD FOLKS...its hard..

38 Replies
laglag profile image
laglag

I can relate to what you're saying. Yesterday I saw a new red Malibu that was real sporty looking and I thought I'd love to have a car like that even though mine has all the new gadgets it's a 2014 but I thought I may not be driving too much longer so why get a new car?

I hate that phrase "you look great” If they only knew how we felt. You probably don't like this phrase either but I think it's something we need to say every day because we don't have much choice..... Don't give up, keep fighting!🥊

beehive23 profile image
beehive23 in reply to laglag

definately! but coming from you to yourself it becomes a survival tactic....positive affirmation...because you know how you feel and acknowledge that yourself...hang tough..

Moondaughter profile image
Moondaughter

In Oregon the DMV has a division called "The At Risk" program. A few weeks ago I received a letter stating that I had been "reported" and my drivers license will be suspended unless I take 3 tests and pass them-the last which is only available over 100 miles away and in much bigger cities than I am accustomed to driving inHere. Any details regarding this report was including such as who made it (can be anyone) and what was reported I was not priviledged to. If I wanted a trial It had to be arranged within 2 weeks of the date of the notice (and I'm guessing the location would be in Salem -260 miles from here). Just a heads up for ya'all.........Really enjoy your posts beehive! When people ask me how I'm doing I feel such a contradicting mixture of things its just easier to default to I'm OK-maybe its not that they don't care...its' just that.... they don't care ~ and , when I accept that it seems to create a space that opens up a more honest conversation in me -often though lately its a struggle to name all of what I am feeling and experiencing. youtube.com/watch?v=gPKZTO9...

kaypeeoh profile image
kaypeeoh in reply to Moondaughter

I live in fear of such intrusions. The neuro said I have PD and should quit driving. She said I can get a license for other identification purposes. So I can fly or vote, I guess. In nicer terms I said, "bullshit". She set up a 'driving test'. I said Okay because I knew I'd pass the test and that would be the end of it. But the test had nothing to do with driving, Instead it was memory questions and logic puzzles and walking around small cones on the floor. Somewhere during the test it hit me and I shut down mentally. I quit answering questions truthfully and said, "I dunno" to each. So my result was poor.

I realize people with brain problems might need to quit driving. But I don't have problems. I don't mistake the accelerator for the brake. I don't get lost on familiar roads. I do well on silly logic problems. A year later I took the same test again. This time I was prepared and answered all the questions. The guy said I did a lot better than last year but still thinks I shouldn't drive. WTF??? It's like I've been branded; I should give up and get used to others chauffeuring me around everywhere.

So far I haven't given up my license. My wife keeps the car keys but I have a motorbike. If I need to go somewhere I use that. So if I have a problem driving I won't crash and injure someone, other than myself, and she won't be sued.

beehive23 profile image
beehive23 in reply to kaypeeoh

holllllay.....these stories are brutal...im aghast...

justhavefun2 profile image
justhavefun2 in reply to kaypeeoh

I feel really sad about your plight. I admire you for using your motorbike. Seems like a good alternative to maintain your independence, plus they are waaaay more fun than a car!

kaypeeoh profile image
kaypeeoh in reply to justhavefun2

Yes, they are fun. If dangerous....

motorbike
MarionP profile image
MarionP in reply to kaypeeoh

Absolutely and they have happened to me more times than I can count and it's just pretty damn horrible. People are assholes. What they do when they get authority is be even worse assholes. They can literally ruin your life and they don't even give a crap, because they are also stupid and just plain hostile. Even the well-meaning. Maybe especially the well-meaning, "for they know not what they do." Evolution.

beehive23 profile image
beehive23 in reply to Moondaughter

oh my goodness! im so sorry thats horrible....

MarionP profile image
MarionP in reply to Moondaughter

Yes that at risk nonsense and other prejudice are horribly unfair and they happen all the time. Just another example of art genetic wiring that says anything different is bad and must be targeted because we must maintain our numbers since our fingernails are no match for the tigers so we must be all together and happy with each other or else we may die and so anybody who is different in any way has to be hassled until they have been expelled. It's in our genes.

ddmagee1 profile image
ddmagee1

Well said! I feel much the same way! I have a vehicle ( not a Tesla ), that has just about every safety, & help feature ( such as automatic parallel parking ), that one can get. Drowsiness alarm, push button start, lane keeping alarm, all car surround alarms, (if another vehicle, a person, or obstacle, is too close anywhere around the car), automatic braking, (if anything is in the way, too close to the front of the car). Automatic Distancing of car ahead-cruise control, blind spot warning, etc. So, several times, these safety features have come into play, and have helped me! I live in a busy, high traffic, city, where there are more accidents, historically, than some other cities. I am 20 years older than you, so, along with PD, my age goes against me, as far as driving is concerned. Concerning the way others treat me, I get that all the time, even from some Doctors, that I look great, and they don’t see where PD is affecting me, that much, when, so often, I feel terrible, inside, and have variable mobility problems. Variable numbness is a problem for me. Peripheral neuropathy is in all 4 limbs! Swallowing and digestive system problematic, every day etc. etc. One irony, that, surprisingly, some of my Docs. even, don’t seem to understand, is that, on one day, I can do some things, and the next day, I have a terrible time, where I can’t hardly do the thing I could do the previous day. Walking, and using my hands for doing mechanical things, are good examples of this. It truly irritates the heck, out of me, when someone implies, that perhaps, I am faking an ailment, and am not really that impaired. Me having Parkinson’s , for some people that I know, is just a minor ailment, and nothing like really serious diseases, like Dementia, stroke, or ALS! I do not ever complain much, and blame it on age and arthritis, when questioned. I used to just be impaired on my left side, but, now, I have impairment on my right side, which makes doing things, much more difficult. Yes, having advancing PD is difficult, and, actually, for me, the only ones who seem to really understand, are those who, also, have PD, that I blog with, on HealthUnlocked.com! Thanks to all, who have been so helpful, on this forum!

Seamus6 profile image
Seamus6 in reply to ddmagee1

Sounds like a great car....there will come a time, however when the most dangerous element of road transport will be removed from all control .... people!

MarionP profile image
MarionP in reply to ddmagee1

Okay McGee so you must tell us what is that car that you have inquiring minds want to know especially me

ddmagee1 profile image
ddmagee1 in reply to MarionP

It is the FORD ESCAPE PLATINUM-fully loaded, with all options!! I got a big discount, though, cause I worked at FORD, in management, many years, as part of my retirement package.

LTT0019 profile image
LTT0019 in reply to ddmagee1

You are so correct... PD is a boutique disease no two patients are alike. HaHa we are not alike with ourselves from hour to hour or day to day. Someone would say to me "you are walking so well" and I will reply " just waite a hour and check me out I may have frozen foot to floor and I can not take one step". Some people look at you like you are not sick. Why are you on DBL? I was in a rehab facility (not for PD) and the PT tech admonished me for not trying because I did so much better yesterday. I explained it was my PD acting up. She did not believe me. I got ticked off and I firmly educated her on PD.

JustJeff profile image
JustJeff

I can relate to this my relatives say "oh well you look ok"....and im screaming inside its not just tremors Parkinson's is so much more complex than that...i wish they would do a small amount of research and try and get a better understanding .......my gasted is flabbered :)

ddmagee1 profile image
ddmagee1 in reply to JustJeff

Keep your good sense of humor!

beehive23 profile image
beehive23 in reply to JustJeff

hahahah funny...ghasted flabbered...thats rich hhahah

MarionP profile image
MarionP in reply to JustJeff

Well see you're just no fun anymore.

What about trying money?

beehive23 profile image
beehive23 in reply to MarionP

your hilarious heheheh.

Grumpy77 profile image
Grumpy77

Could be they meant "you're doing great (financially)"

Or they were not aware of the drive-assistance tech in your new car and probably thought you're getting a new one because you're feeling fitter and have better body movements

Looks like I'm "excuse guy" for your folks 😄

beehive23 profile image
beehive23 in reply to Grumpy77

no they live on the same 5 acres in the other house...they know how im doing...but nice thought......my folks think pd is caused by satanic possession.....

kaypeeoh profile image
kaypeeoh in reply to beehive23

But maybe they're right? I googled satanic possession and Parkinson's and found several repots like this: Victim of Satanic Ritual Healed of Parkinsons & Sclerosis ;-)

Grumpy77 profile image
Grumpy77 in reply to kaypeeoh

I'm guessing you're not saying that seriously and you know the way the internet works, right? For instance after reading your comment I just went and typed something meaningless in google search "dog on the moon". And lots of results came up that looked deceptively meaningful but they turned out to be complete BS with respect to a dog on the literal moon because people dump a lot of sh1t on the internet

I
beehive23 profile image
beehive23 in reply to Grumpy77

no im dead serious....no pun intended hehehe

beehive23 profile image
beehive23 in reply to kaypeeoh

hahhahhh very funnny......

MarionP profile image
MarionP in reply to beehive23

That explanation may be as good as anything else we have. Never see somebody with Huntington's? (Probably not because they die from it so fast.)

Jebbie12 profile image
Jebbie12

When my sister asks how I’m feeling and I say I had a bad day I’m mer with silence. But. If I say I had a good OK day then she’ll let me talk. Otherwise she just change the subject. People are very uncomfortable when you have a condition that is worsening. They don’t know the right words to say. They do still really care in my opinion

beehive23 profile image
beehive23 in reply to Jebbie12

hopefully you are right maybe they do care but that doesnt help us in this case.... hang tough

ddmagee1 profile image
ddmagee1 in reply to Jebbie12

I would have to agree. That’s why I try to minimize discussing my ‘condition’, with most people, and deflect the cause of my symptoms, from PD, when noticeable, to just saying innocuous old age stuff, or arthritis etc. By doing that, people don’t seem to feel uncomfortable around me! Before I was diagnosed, years ago, and younger, I remember, there were times I felt very uncomfortable, being around ‘sick’ people.

slimweiss profile image
slimweiss

I empathize with all of you. My hwp just surrendered his driver's license. He totaled our 2014 Subaru Forester, his fault, no collision on our insurance (don't ask...), we now have a huge car payment since it's actually cheaper to buy a new vehicle, and we both cry a lot. He has suffered so many losses over the past 3 years. Our family and friends have been very supportive and kind and they do ask how he's doing often enough and we are honest. This disease sucks!!! We're going today to pick up his beloved VW 78 Bus from the repair shop. My son in law will drive it home and Larry will be the passenger enjoying days long gone I'm sure. We are gifting the bus to him as he is an avid surfer and wants to take camping trips in it with our daughter and kids. My heart breaks for all of you navigating this horrible disease. I love you all, I appreciate you all and I pray for you all.

MarionP profile image
MarionP in reply to slimweiss

Indeed, same here.

LTT0019 profile image
LTT0019 in reply to slimweiss

I had been thinking that there will come a time that I would have to give up my keys because of PD. It just happened sooner then I had expected. I had a reaction to a medication and was paralyzed. After almost two months in the hospital and rehab I was able to walk with a walker. A few months later I was back in the hospital with multiple pulmonary embolism. If I am ill with some other ailments my PD get worse. My aid told me about one of her other patients with PD who lost both her legs in a car accident. She was the driver. So, when my son suggested I stop driving I did not fight him. I can walk without my walker. I use a cane when I go out. I do this hoping people will give me some space. It still makes me sad not to be able to drive. I think I may go to an empty parking lot with my son and have a lttle fun. Eighteen year ago the shoe was on the other foot. 🤣

ddmagee1 profile image
ddmagee1 in reply to slimweiss

I understand that only too well! For some of us, PD is unrelenting in it’s attacking! Just about every system, in my body, has been affected by PD, and now that I’ve had it for quite a few years, and I’m over 75 years old, it just seems to get worse! I do not wish to discourage, or make anybody feel bad, concerning having PD, so enough of my complaining! The good news, is that not every PWP progresses to the point I’m at, and, I have found that stretching, and mild exercising have helped me, in retaining some mobility! Keep moving, is what my Doc tells me, at every appointment! I challenge myself, each day, to keep on, keeping on!😊

MarionP profile image
MarionP

Yeah but that's true about all people about all difficult things that are painful or uncomfortable or whatever. That's human nature and there are a lot of reasons for it but it's not just pwp and people who don't have it. I mean how have you been with somebody who had bone cancer? Leukemia? Whatever horrible experience they've been through. That's a universal thing.

beehive23 profile image
beehive23 in reply to MarionP

my son had cancer, testicular, at age 8 we had to move to denver and live in a cancer kids home by childrens hospital for 1 year.....i never left his side and he was an adopted son of my previous wife.

MarionP profile image
MarionP in reply to beehive23

Sorry about that, I was just trying to make a point. Wild guess obviously.

beehive23 profile image
beehive23 in reply to MarionP

no worries i was just saying that so you understood my level of understanding...hang tough..

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