Parkinson's Disease Support Group

Hi Dorky, yes i have experienced similar think with my family. My husband think that I can do more then I am doing. We have steps to the basement , I call it dungen and the washer and drier is there. When I go down in the dungen I slide on my behind down the steps , when I do go up i go on all 4s . i I ask my husband to install one of those lift chairs , so its easier for me to get up or down. God knows at certain point , when my meds stop working, I do not dare to go down . even sliding on my behind. When I do the laundry I stay there all day until i finish ,have everything folded and in the baskets , then i go up and ,he brings the baskets up and I can put the thinks away. What gets me that i have to go to the loo sometimes and I have to crawl up the steps , to get there. He does not want to instal the chair , because he says the exercise is good for me. I exercise 1 and 1/2Hr every day . I do not ask for much , if I can do it my self , I do it. But if i ask , it must b a problem. I too do not want red carpet and fanfare ,Jjust a little consideration. So if your family does not help , haw can u expect it from a stranger.

Well that is sad, I'm so sorry. My symptoms vary by the minute and yet everyone understands here and nobody is judging me. Our little laundry room is right off our bath, main floor so I just toss in my clothes when getting into shower. I am thankful for that. You might try Craig's List to find a portable W/D unit that hooks up to kitchen sink. Honey, I am so sad for you. HE OUGHT TO BE DOING THE DAMNED LAUNDRY WHAT THE HELL IS WRONG WITH HIM????? You've had 7 surgeries. Forget the washer, I'd look for a lawyer. I hope he's a wonderful man other than that but you are not a house slave...spending the day in the basement?????? YOU deserve better, and hey we'll find you a younger nicer man when you get over that horrid infection. My husband gets off work in 12 minutes so I think I will make the house a little more presentable...he's so patient.....I'm so sad to hear of such treatment...I will keep praying.

Z. Instead of a chair lift move the the laundry up to the bedroom floor of the house. They make stackable units that can fit in an existing closet. I am a firm beliver in adapting your living space to make it useful and comfortable for you, and not worry about future owners. Good luck znd good health Alex

Sorry Dirky for the rude change of your name
I did not mean to , when I answered your post , I was little stiff and hit the wrong key. . I also apologize for stirring the conversation from your problem to mine.
Hey friends I am not as helpless as I sound. When I need some think and thing it is necessary i insist and get it. I just ment to shove Dirky
. THat it does not have to be always friends and strangers who treat you like crap. But also the people who are closest to you and should know better. I do not let my husband do my laundry because he washes all together and in same temperature ,usually hot and ruins my clouts. He does not like to be told anything He knows it all.. So I have to have talk with him about the lift chair. I am sure I prevail. I usually do. When I spend the day in a dungen I make sure I am comfortable. I have music there and I take my craft there, or if I feel good I organize thinks and do not wast my time.when I crawl up my breathing is not so good. But I compensate . Zlatica PS> Alex we try to put the w/d upstairs there is no room.. Only in bills room ,that is the name of my husband.He tock closed out and put a desk in that space which is wortless and just has clutter.OK that gives me an idea. I may not be able to do laundry at night . BUt who cares with a w/d upstairs i can do it anytime.

Yes - Dirky (sorry - Zlatica, but I'm sure Dirky knew you meant no offense & to tell you the truth I read right past it until you pointed out your misspelling of his name. Thanks for the chuckle!!!). ANYWAY - I have experienced this from mostly friends. I think the person that has hurt my heart the most has been my very best friend. If I make any small comment about a symptom I am dealing with, she always says it's just our age (55?). She has the same problems, she says. The person I have always been closest to & now I cannot share the biggest issue in my life. I try very hard not to discuss anything PD with her if possible. My husband swears it's because she is having a hard time dealing with the fact I have PD and she is afraid of where it is going to take me. Maybe he's right. And, maybe someday I will be able to have that hard conversation with her.

I don't ask for or expect special treatment. But, like the rest of you I have learned adapt to the way I am able to do certain things in order to keep going (and stay upright!).

I know what you mean about facial expressions. I didn't think I was having that issue, until several people (family & friends) started asking me what was wrong. When I would say nothing, they'd tell me I looked mad. Duh! Finally caught on that it was a symptom of PD. Now - if they say something, I just lightly explain that I'm not mad it's the PD. They seem OK with that. Haven't been out amongst strangers so much that I've noticed them staring. Maybe they are!?!

Want to know one of the worst PD days I ever had? Wore my "I Make Parkinson's Look Good" t-shirt to the doc. She LOVED it! Went to do a little shopping after, since it was in a town I only go to once in a while. It was Spring Break. Didn't give my shirt a lot of thought until I noticed kids trying to read my shirt & their mothers pulling them away from me to discuss it down some side aisle. HONESTLY - this happened in every store and several times. I felt like I was some kind of monster!!! I tried to smile & wear it proudly, but was in tears all the way home. Still think about my experiences that day.

Dirky - I hope you find comfort in this site and the fact that we care & understand your feelings. Sometimes you can cruise along just fine and sometimes it all feels like it is crashing down on you. I certainly do relate to your point.

my my my......not to be left out.....i have lost all of my friiend sover this they are either Tea and spit on the disabled or they just stopped calling me or both.Its horrible to top it off i have to try very hard to hide my symptoms at home as my wife is getting tired of it and has nothing much to say anymore about it so i try to keep to myself my feelings etc. Honesty is not always the best policy or u willl eventually bring the peoplle closest to u down and compassion burnout depending on how bad u are physicllay yet.

peace

bp

I have lived with disability all my life (Not PD, but I can identify) As a little girl, I agonised over my limp, thinking everone was staring at me.I eventually got over myself, and did EVERYTHING I ever wanted to do in life, including working and qualifying as a nurse (On ones feet
for long hours Very tiring...) I went on to obtain a further degree as a medical scientist, and I have enjoyed every day I have been granted, Everybody, including me, forgot the limp totally. Live joyfully, then people want to be with you, Nobody cares a hell of a lot what problems you have, given the fact that they are worrying about their own. Sometimes a pimple on your nose can also cause you to believe that the whole world is staring and talking about you, but you do not see anything about it on the 6 o'clock news despite the fact that you were certain you would. Be all that you can be, because you can!

Dirky: good friend, you have really stirred up something interesting with your question.

My own experience with pd has been different from yours... so far. I am lucky. But I have experienced similar frustrations through other afflictions. It is amazing how many otherwise-savvvy adults believe that ADD is a con, for example.

So, just how can we deal effectively with people who are clueless? What we probably need is a "PD for Idiots," like the book series, only shorter. Like one page. With LARGE TYPE... and simple words. Nicely packaged, showing care in preparation. Maybe two versions: a gentle one for the the naively uninformed, and a more blunt, graphic version for entrenched Luddites. Hand it to them (version A or version B), saying something to the effect, "Here. Before we talk any further, let me give you this. Look though it while I go freshen my drink. Can I bring you anything?" Or pass it around the table at Thanksgiving or New Year's Dinner... for guests to read... before grace.

And, of course, in it are short explanations of pd conditions like rigidity, flapping extremities, shuffling gait, soft voice, mask-like expression, problems with balance, and so forth.

Then you REALLY got me thinking, Dirky. So I googled these keywords "Experience Parkinson's disease symptoms simulation." And I came up with exactly what I was looking for. My suggestion about a one page "PD for Idiots" is a bit tongue-in-cheek. This one is serious.

Imagine any of us having an opportunity to present PD to a small group (church, club, whatever). Normally, that would mean that we would stand up on our hind legs and tell them all about it. Lead balloon, right?

Now, instead of that, take a look at this:

http://answers.yahoo.com/question/i...

Think you could do it? Let your audience actually experience it for themselves?

Thank you, Dirky. Cheers to all.

Beekeeper

Dirky, When I first was diagnosed with PD, Everyday my in-laws would ask me how are you doing toady , how do you feel, etc. I tell them it changes all the time. My wife finally asked them to stop asking me. in a polite way. You're right I don't want a pit party. If I feel it getting uncomfortable at get together I try to separate myself from others. Usably someone that understands and knows me will come over and talk with me about things other than my health. Those are the people I appreciate I think some people want to notice at compassionate and caring people for no other reason then an image. Brian

Hi guys, thankyou for your inspirational responces... truly food for thought.
I missed something out of my original post, and that is, in the early days after diagnosis.. as you will all know that it's awful enough when something comes out of the blue as PD did in my case... it blew apart.

I recall my closest family were constantly around me to help me soak in the shock that I'd had.... but it was also one of those defining moments in life... as only one other family member dropped by at the hospital to see me... and that shocked me.... in fact some people that I had known only for a short time came by and I found that quite touching.

If compassion, consideration & understanding doesn't come naturally with genuine warmth and true kindness from people whom you've considered as family at a time when you really need it most, then they ain't worth bothering with.

Thankyou ~

yours Sincerely Dirky ?;O))x