[AnnT2]

I am not handling this well. When we have guests for dinner, if I try to do something simple like dish out ice cream, I am overtaken by hovering friends who take the scoop and leave me standing aside useless. One time I wanted to continue watching a football game with the visitors (the purpose of the visit) after dinner and before dessert, but one person insisted on doing the clean up. I should be grateful, but it makes me feel incompetent and just reminds me that I have PD.

A trip to New York was planned but when I said I wanted to go, I was told it would be too much for me. Heck, a lot of things are too much for me, but I still would like to decide for myself. I tell them I can do almost everything, but it just takes me longer.

Of course it is nice to have people do things for me, but I don't like being treated like an invalid. I say that, and I promise that some day I probably will be an invalid, but not yet!

Maybe I am wrong, (I probably am wrong), but I suspect that they feel as good about themselves when they give a helping hand as I feel badly. That grace attribute seems to be eluding me.

AnnT2

[waterwillow]

I know how you feel, for a while I put up with my kids doing all sorts for me even when I was having what I would call a really good day. Frustrated me until I eventually blew a fuse. They hadn't realised that they were "deskilling" me and removing my confidence.

After clearing the air, now it is agreed that I am asked beforehand and if I say "no it's ok" then that is respected.

You need to say NO when people overstep the mark. Sounds harsh but I know I felt better when I did. Some days I do say YES just to keep them on their toes and to stay in control LOL

Get it off your chest feel better

[Conductor71]

You are fortunate to have people tripping over themselves to help, but know how it is when they go overboard.

A nifty idea I just learned from a good friend who also has the shaking palsy is to be proactive and assess where your friends and family members strengths lie and assign them roles or tasks that will help you but not leave you feeling helpless. This way they are expressing how much they care for you but are not stepping all over your toes. Plus, they then know what to do and when to stop because you have given them boundaries. Sadly, I don't have this problem

Laura

[indigogo]

AJ Wasson and I met this weekend in NYC for the MJFF Scientific Roundtable. We stayed together at the hotel, and I think both of us were hyper-aware to not give each other help unless asked (we both yielded to help when dressing - how great to have a roomie - I live alone).

At the roundtable, AJ's alarm rang for medications. She popped the pills, but could not still her trembling hand long enough to take a drink. All of a sudden, a hand appeared between the two of us holding a straw, a voice saying, "this helps me at times." It was Michael J Fox, offering just enough help, just in time.

[stevem53]

Pd is a weird disease...I think just the word "Parkinsons" translates to some people as helpless

Asking for help, and accepting help when needed/offered is not an easy thing to do..I want to hold on to my independence, with claw marks if necessary

People offer to help, and some times its comical, because they dont know how to help you..They'll hold a door open for you, and then stand on the wrong side of the door, so that it's a guarenteed freeze when I reach the threshhold..Then when they see you frozen in place the say "let me take your arm"....They dont understand that doing that does not intiate movement, not for me anyway.. For me it intiates, Hello floor!! Then when I tell them to put ther foot in front of mine like they're gonna trip me, and they look at me like Im crazy..So they do it in a postion like they are ready to catch me when they dont understand how Im not gonna trip over their foot and fall..Then without trying to be rude, I have to stutter out trying to explain the unexplainable, while searching for words to attempt to explain the unexplainable

Then when my meds kick in they come out in my boat with me, and Im so active and into working that they get in my way, and then they have this dumbfounded look of disbelief and inadequacy on their face How do ya like me now??

[moondaughter]

Originally Posted by Conductor71

You are fortunate to have people tripping over themselves to help, but know how it is when they go overboard.

Sadly, I don't have this problem

Laura

sigh.....me neither Laura - sometimes being a mom trumps being sick.
sharilyn

[Nan Cyclist]

When I was first diagnosed I explained to my friends and family, especially my husband, that I wanted to remain independent. I would not ask for help unless I needed it and if I asked for it, they should give it without questioning my need. Just because I could do something at one point in time didn't mean I could or couldn't do it the next. This trust arrangement has worked very well for the past five years. With strangers I just say "thanks" if I don't have time to explain how they could really help.

[soccertese]

it's the thought that counts. eventually we'll need all the help we can get.
to keep things in perspective, i think of myself when in my "pd state" as a very old person who might need help and that's basically how i treated my parents when they got older, the first time one of them stumbled or had an accident that was a game changer, i would rather offend them than risk having them fall,etc. now i'm in their position at times and i just grin and bear it.

[pegleg]

That little story was so descriptive that I felt like I was there!
Of all the things we can gripe and say about this disease, I have to give credit where credit is due - I would have missed some cherished friendships if I hadn't traveled this path.

And those friends show up at the most convenient times. Once I was flying alone and was making a connection in New York and went off very badly. I mean I was barely able to stand up and couldn't lift up my small carry-on bag for the scanner. A handsome gentleman appeared, strongaccented and what I would describe as a "hunk" (I know I'm too old to lust, but he was built!) Anyway, he lifted my bag on the belt like it was a marshmallow, then offered a strong arm to board the plane.

This hunk and I boarded early so as I watched the plane fill up, there were what could have been scores of these hunks boarding the plane. (I had to turn on my air-conditioner).

I knew they had to be together because they were conversing with each other - sometimes in English; sometimes French, and some in languages I could not identify. . So I asked in my best Tennessee English, "Where are ya' all from?" It was the whole datburn Montreal Canadiens team! Did I see the team logos? - No! Did I note that they all were at least 6' tall and weighed a minimum 200 lb (that's English measurement). No!

So that was one of my memorable times as a result of being a PD advocate. I cannot promise you that your experience will be as . . . shall we say picturesque? But you will never forget it.

And honey, I will let any NHL hockey player assist me any time! Why, I might even exaggerate a symptom to get help!

[aj04]

The issue of assistance is very complex. When I was diagnosed almost 18 years ago, I came out of the neuro's office was a prescription for sinemet, but no prescription for the grace that would let me continue to live the life I wanted in the face of slowly increasing need for more and more help.

For many years I basically refused any assistance because I didn't really need assistance. I could cut my own food, button the buttons on my shirts, get in the car at any hour day or night and just go somewhere. I could color my own hair and cook a simple meal for friends, go for walks around Lake Merritt. Basically I could do anything. It took just a little more time and effort, learning new ways to remember how to perform tasks which were once simple muscle memory.

When I found myself in a situation where my being helped was inevitable, I fell back on the grace argument. I was a live opportunity for strangers, family, and friends to do their good deeds for their day. I was the instrument by which they could practice being good, kind, attentive people. I was their chance to feel good about themselves. But at that time I rarely needed help. And I had something of a pact with close friends and family to verbalize when I did want or need help and on their parts, to ask before charging in and taking control.

Now I'm facing a different dilemma. I rely on family and friends' help as a matter of course. I frequently get a hand up when rising from a chair; I get help tying my shoes and taking on and off my jacket; when friends come over, I let them loose in the kitchen to prepare and cook the meal and to clean up afterwards; to get down the hill in the parking lot of the YMCA I take Greg's arm so I won't fall.

The balance has changed. Help is no longer a matter of being the object of someone's good will. The issue is accepting the help I now literally need, that I couldn't do without. And conversely I can no longer offer what little help I still had to give, say, in the kitchen. At the holidays in particular when one is expected to and wants to chip in, not being able to is stressful and my earlier theory about my reason for being the object of people's kindness wears thin.

The game has gotten tougher, tougher than I expected. Of course, sometimes I stubbornly work at something, performing the task over and over again without success, but unwilling to give it up. It is still a battle to keep one's independence but it is now also a lesson in letting go, not judging yourself on the basis of your outward ability, but rather, reaching down inside for that deeper grace, the grace that lies under the surface grace.

And I imagine that the giving and accepting of help will become more lopsided in the future. So, my issue is how do you deal with your dis-ability as it increases at every level? I haven't yet figured out how to satisfactorily convey my gratitude to those who help me day in and day out. I don't think they are aware of how deeply I feel supported and blessed–and thankful–for their generosity.