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Mihai

A question to ponder...

22 posts in this topic

Hello friends...

 

Being a social worker by profession, I often enjoy picking people's brains...  So, here is a question.  Maybe it will spark some thoughts or ideas as to how we can better interact with and support each other.  Here's the question:  What is the thing that you most wish someone would say to you or ask you regarding your day to day struggle with PD?  We all spend alot of time talking about doctor visits, symptoms, side effects, etc. and we all spend alot of time educating others about the disease process; but, what is that one thing that you want someone to say to you or ask you about PD?  I look forward to your responses.

 

Get thinking...

 

Mihai 

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If they're not involved in my life to a large degree I'd prefer they said nothing. If they are a big part of my life (eg parents, spouse, best friends) then a simple "how are you doing" or "check this PD article out" is plenty. Then I can choose what and how much to share. Having anyone, though especially those I'm not that close to, pry when I'm not in the mood to discuss it will just annoy me.

Edited by stump
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One thing that bugs me is when i search for answers of why i get myoclonic movements with my PD often I hear I need  stress management.lol

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Most people can't tell I have PD.  For those who know of my dx, I prefer not to talk about it.  When asked how I'm doing, my response is usually "fine."

I have been asked what it feels like but am unable to describe it.  The wide array of symptoms start to sound like I'm a hypochondriac so I would rather not answer.  Gardener

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Thanks Dianne!

 

That was excellent...a very good analogy/explanation for how many of us function day by day.

 

Thanks for sharing that.

 

Mihai

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There aren't to many people that truly want to hear how you are doing that day. Most are being kind and want to hear that you are fine. The details make them squirm! But when someone looks you in the eye and really asks how you are, well that feels as good as a hug.

People who say they have the same problems or its just aging really don't get it. And the worst thing they can say is "well, you look good" - that makes me crazy!!!

Retired social worker)

Twitch

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Good Day,  It always is nice to see your posts Mihai.   I first started to listen to You on the YOPD forum, many years ago.  I remember one of your posts where you told us about trying to do up a top button on your shirt to get ready to go to church.  You were frustrated by the fact that your fingers couldn't complete that task and you had to ask your wife to do it. My first thought was I don't have trouble doing up buttons. I was younger and stronger 10 years ago and I could hide my symptoms quite well. I entered my PD years feeling that I would not let this drag me down. I was 49 when I was dxd and I was pretty sure that I was likely the youngest person in the world to get Parkinsons.  Joining the YOPD, I soon realized that there were many people with PD who were a lot younger than me.  They had young children to raise and were affected by symptoms much more advanced than what I was experiencing.   I am grateful that people like you Mihai, (Brooksie, Bill,  Reverett, Paper Bag Princess and many more as well) who took the time to research, did the fact collecting, posted encouragements, steered people to new techniques and were a solid source of knowledge and experience of what I would later discover happening and say to myself oooh! this is what they were talking about. Thanks Mihai for doing what you do and have done for us all.

 

Now, to get to what you were asking Mihai, I wish this.

 

I had the great luck to be born into a wonderful family.  Mom is still with us, I have 2 older sisters and 3 younger brothers.  All of them are caring and generous and I love them lots.  I have had Parkinsons for 10 years now but I don't think that they could pass a basic quiz about  this disease. They ask how I am, and I have always said fine. They can see my hand shake, they know that I don't go to work anymore, and they know I take a bunch of pills. They don't understand the medication,   or the brain rot, non motor symptoms, the difficulty of rolling over in bed and pulling up blankets, They don't know how I view my future years.  It is partly my fault.  They ask how I am, and like most of you, I say I am fine because, as others have said, that is the correct answer.  The one that they want to hear..

 

I wish this:   Following a family gathering, the next day one of my siblings would say, John, we can see that PD is getting more difficult for you. We don't really understand that much about the disease and what you go through.  Why don't you write us a little outline of Parkinsons.  Tell us about the symptoms you have, the other things that happen, what drugs you have to take. Tell us what we can do to help and how you see the future years.  Yes, and for that wish to work, I would have to refrain from saying, like we all do, "I'm ok, don't worry about me"

 

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Jb, my opinion (whether you want it or not) is to write that outline anyway.  Ask them to please read it and to keep it.   I think it would be beneficial for many reasons, now and in the future.  Or, give them a book about PD.  I feel it is important for people close to the patient to know about PD.  It is a very complicated disease, one definitely in a class all by itself.  So many facets to it and so many side effects of drugs on top of the ins and outs of disease itself.  Non-motor and motor symptoms changing all the time.  I think educating people close to you will help them understand what you are experiencing and what they may be witnessing at times.  Just my thoughts.........

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Thanks Ella.  When I read back what I wrote yesterday, wishing that my siblings had troubled themselves to learn more about PD, and reading what other people have to live with or through, well I think I sounded a little bity whiney.  I'm lucky to have 5 wonderful Sibs that care about me, even if they don't fully understand me and my problems.  Maybe I should prepare a brochure for the general public to help understand the average PWP.  Take the Me out of it.  Yes, thats the ticket. jb   

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When someone ask specifically about my PD and how it is going with it, I am generally not bothered. I tell them my Pills are working good and some days are better than others. Depending on who they are in my life I will tell them some of the things that I have trouble with.

 

As far and being asked how I am doing my general answer is good. For the most part I am doing good.

 

My biggest thing that I wish those who are close to me would do, (example, spouse, close personal friends, family) is when they see me with a small tremor and I reach to do something, just let me do it. I am tired of explaining it is a resting tremor at this point and I can pick up this glass and I can carry this or that. When I need help I will ask. I know they care and want to help, but the jumping in and taking over makes me feel like a child all over again.

 

I love my care giver/ husband dearly. We have this talk very often. He is better at under standing that a tremor is the least problematic symptom I have. He has learned to just look at me in the eyes and say "Good?" I will respond with a yes or could you assist. Now it is to get the family and close friends on board.

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It would be nice if people would not blatantly ask "You nervous?" when they notice my tremor in public.....I generally just make a joke about their level of attractiveness making me jittery...

 

As for the people I care about and who care enough to ask me how I'm doing, its the same as if I didn't have PD. They ask me whats going on, and if PD is what's going on for me then I talk about it, and if not I don't. If I ask them, they tell me about work or their spouse or whatever is going on with them. I enjoy not being singled out as different and asked only about one part of my life. 

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Oh boy...where to start... I'm rarely asked how I'm doing, let alone for any details. My Intended is either in denial or terminally compassionless - a tough ex army PTI who said "There's nothing I can do for you - you'll improve if you want to". I honestly get more compassion from my pets who seem to sense when I'm "off". Sometimes a massage of rigid muscles would seem like bliss, but dream on...

 

I might make up a wee booklet about my specific PD and what meds/when and what my personal symptoms are, but I doubt it would be read by the one person who should be reading it! 

 

I did make some items on Vista Print to help me - a keyring fob which is attached to my handbag - it has the medical alert symbol on it and says "I have Parkinson's - I may shuffle or freeze - your patience is appreciated!" and a couple of the same thing printed onto business card sized name tags which can be pinned onto clothing or hung around the neck. This is ideal for use in shops, namely shopping malls which spaz me out. On the back it has my ICE contact details. 

 

On the whole, I don't go out of my way to inform ppl I have YOPD, but one recent time I needed to disclose, it was met with "Oh no! You are going to have the most horrible death!" - that was the response from a nurse specializing in geriatric care. This nurse has also suggested I think about "Doing a Robin Williams"...So much for mercy. 

Edited by Gypsy Gold
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zMy father had PD 15 years.We never had a conversation much about it.he did do a lot of advocacy for PD.Sort of never thought some day i might get it.

I worked with a friend for 10years.I knew had some kind of tremor but paid it no mind.I heard a few years ago he had parkinson while he worked and lived with it for over thirty years.

So you can see how having PD can be a average chronic illness

Ive had PD a good six years now and while it has advanced I count myself lucky when I see what happens to others with cancer 

I also know advanced can be hell on us so might as well enjoy our good years.and do everything I can to slow our common aliment. 

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I hate what I call the "puppy dog eyes look" and when I get "well you look great" .. I have actually responded "am I supposed to look like crap?"

 

I guess I don't want people to ask anything...is that weird?

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Hardly anyone except a few close friends and family I know asks much how Im doing.I guess Im doing great wearing the Mask.LOL

Thats one of Dr.Low's favorites ,when your in temper or symptoms ,wear the mask and don't show it.

Don't get me wrong advanced is another world I havn't arrived yet still on the plane,

Im always out there hoping I can be of some comfort for them.

While cold today the sun is out there a warm up coming tomorrow

Happy Sunday

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what is that one thing that you want someone to say to you or ask you about PD?  I look forward to your responses.

 

 It's the fact that I start thinking I'm doing good or fine when:

 

I go in to see the court clerk about an exemption because I have Parkinson's(I had gotten a summons). The neuro gave me a letter to give them.  The clerk takes the letter to make copy and when she comes back says, "I think we can make this a permanent exemption. " 

 

Or the time I go to get my driver's license renewed and the clerk asked my hubby, "Is she OK?" I had stopped driving but thought I should have one just in case. I used to ace the driver's license test which I'd study for. But when I missed the question of the circle with a line thru the P ( I put it meant 'No People') I knew I was in trouble. Gave the clerk a good laugh. 

 

Or the time I went for my Neuro visit and he thought I needed a handicap card (hang it on the rear view mirror). I actually argued with him. Afterwards I knew I did need one at times. He had pointed this out. 

 

These answers may not be what you wanted so disregard if you like. I guess I'd just like to live my life so no one can tell anything is wrong. 

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 I am a talker and I definitely inherited that from my mother.  I'll talk to anyone about anything .   If  I see someone looking at me funny because of something I've done or how slowly I'm moving  i'll just say "I have Parkinson's". I've never gotten a negative response sometimes people ask me questions sometimes they don't.  If they ask questions I'll always give them a truthful answer. 

One day One of my husbands coworkers caught her spouse asking me questions about PD.  She chided him and told don't  ask her questions about her medical condition again .   And here I was thinking it was great that now he knew  more about my condition because we frequently travel with them so it's been very helpful that he understands more about what I'm going through. 

Truthfully I think my coworkers spouse knows more about my PD than my own spouse. 

So really I just want people to ask anything that They don't know or understand. 

Delta

Edited by deltsea
Typo
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Excellent question, great responses.

I like it when people, especially ones I know, ask detailed questions, either about PD in general, or my PD specifically. I really don't mind answering questions as I'm happy to educate people. Sometimes, things are hard to explain, but it's still ok because I figure the challenge is good for maintaining my cognitive function. Not many people ask, though. Perhaps they think I don't want to talk about it. 

It amuses me when people comment about my relative youth. My best response is, "Disease knows no boundaries. I have a friend who was diagnosed with breast cancer at 33." 

What I wish others knew: Routine tasks are anything but. They require more effort than they could imagine, but they won't hear me complain because I don't want pity. Everybody has problems. Mine aren't necessarily worse than someone else's, just less common & less understood. 

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On April 16, 2017 at 0:22 AM, secret squirrel said:

Excellent question, great responses.

I like it when people, especially ones I know, ask detailed questions, either about PD in general, or my PD specifically. I really don't mind answering questions as I'm happy to educate people. Sometimes, things are hard to explain, but it's still ok because I figure the challenge is good for maintaining my cognitive function. Not many people ask, though. Perhaps they think I don't want to talk about it. 

It amuses me when people comment about my relative youth. My best response is, "Disease knows no boundaries. I have a friend who was diagnosed with breast cancer at 33." 

What I wish others knew: Routine tasks are anything but. They require more effort than they could imagine, but they won't hear me complain because I don't want pity. Everybody has problems. Mine aren't necessarily worse than someone else's, just less common & less understood. 

Love the last part! i also love when someone says "well you look great..." I just laugh and ask " am I supposed to look like crap?" It usually lightens the mood.

and  attitude is everything, you're right!

 

LAD

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On 2/10/2017 at 7:00 PM, Mihai said:

Here's the question:  What is the thing that you most wish someone would say to you or ask you regarding your day to day struggle with PD?

 I'm really lucky. I'm surrounded by people who've allowed education to be shoved upon them, for example handing the NPF green book to everyone who knows my Last name. Had long uncomfortable conversations about impulse control disorders and what the future may hold in terms of increasing disability with anyone who's given me a ride in the last two years. And if any one in the ride giving category sees any signs of impulse control disorder, or anything else that worries them that I discount when confronted, they are to bring those concerns to the people in the final category- the people who hold my hand in the hospital and know my advance directive says I don't care whether or not I'm creamated, so long as I'm buried under a grave marker that says something clever- the ride giving people are to report to the hand holding people because the hand holding people are all signed off as being able to have a conversation with my doctor. In turn my doctor knows if I try to revoke all their permissions at once, he at least needs to be a bit suspicious. There was a thought in there somewhere, I swear. I have the best luck in friendship if not in surgeons. I think that was the point.

 

On 2/12/2017 at 7:07 AM, Twitchy mama said:

 

There aren't to many people that truly want to hear how you are doing that day. Most are being kind and want to hear that you are fine. The details make them squirm! But when someone looks you in the eye and really asks how you are, well that feels as good as a hug.

 

This made me laugh for reasons which will be clear in the text exchange I had with one of my care workers after being admitted to the hospital tonight (names changed to protect the guilty)

Summary of preceding conversation- I'm in the hospital for the abcess the first surgeon kept misdiagnosing as something else, then trying to run out of the exam room as I call after him "I don't know what it is, but I know for a fact it's not that", he'd do a more thorough exam and discover I was right. Then today he tried to send me home unable to empty my bladder, I first called him about the urine retention on Tuesday night. His response? "Well I'd try to get some sleep than try again later." He's got a brain when he slows down but he's busy, and apparently refuses to stay late, he was double booked all day today, but somehow got out of the exam room with me, his last patient, by 4:50. Sorry that turned ranty. Anyway we'd been using my anger at Dr scams to get a little endorphins going because my new surgeon needed to come in and decide the game plan before they could give me anything

So the text conversation I'm going to regret posting in the morning-

CW- Everybody likes you, Feisty. You're a likable kinda gal. 

Me-I don't know, I think the grouchy "people keep asking me that!!!" In response to "how are you doing" that I did at least a dozen times today, was a little jerk-us. Also the "are you s*itting me?" In response to your Pollyanna impersonation yesterday was a bit much

Me-Sorry I groused at you by the way 😞

Me- In defense about my response to  " how are you doing?", I started with "do you really want to know??" And went down hill from there, the only person I actually yelled at was Dr scams, and he'd just heard my response to the last five people

CW-If I had my foot caught in a bear trap and people were asking me how I was doing and the one who could actually release my foot and fix it was basically ignoring me, I might, just *might* be a tiny bit short tempered. 

Me- Well the assistant to the guy who's going to fix the damn bear trap, the guy who's replacing the one I "accidentally" hit over the head with an axe (oops, that darn tremor. Oh well) was just in here. And the assistant promised to go get a pry bar and get to work.  (Translation for the currently entertained NSA hacker reading this: the nurse is going to give me stomach meds and then the good drugs. Sorry your going to have to spy on someone boring soon. Maybe you can convince your boss this is actually terrorist code- only send the good looking bachlor swat agents though, okay?)

That was before they gave me the good drugs, by now I'm flying so high it's going to be a shorter trip to Saturn than home

TL. DR.

Ignore me, ignore the off topic post, just don't pay attention to the girl behind the room deviding curtains. I'm having surgery tomorrow, on lots of drugs but still in lots of pain. Aslo lonely since my usual hospital handholders are either out of town or sick themselves. I was finally able to get the last sick one to leave me by pointing to my nurse and saying "we know him, this is the third time we've seen him this month, we like him, he knows what he's doing. Go home before this becomes a two for one hospital stay"

I've got amazing friends, and I feel sorry for anyone who says  " At least I have my health"

Their about to give me more drugs hopefully I'll be able to sleep

Night-night, and ignore everything I just said. Unless it was something clever 😀

Edited by Feisty Folder
I just discovered why English teachers are anti-drug
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