Hey, Don't give up. My family doesn't even talk about it.I do what I can and tell them I need help, they just look at me and go on with what they are doing. I took care of my husband for 13 years with cancer. The last 2 yr I thought I had PD . Now it's going on almost 10 yrs. My kids are grown and out of the house. I ran the ranch until this year. I didn't stop because of PD. I don't worry if my family understands,one of these days they will wake up and wonder where they were all that time. I take care of my parents 50 miles away. My kids don't check on me they never tell me I can't do or go anywhere. So life goes on the best I can do . What I am saying is one day they will wake up and smell the roses.. Just don't be hurt by what they do ,it just puts more stress on you!! Have a GREAT day! Di

Oh Paula----I am so sorry this is going on. That is what I fear and why I am putting off telling my kids too. Because I know they will do the same thing to me. I may just wait and then they can watch it all unfold before their eyes. They will think I am making it all up too for attention. That is so sick that anyone would think that.

My plan is to ignore them if they start that treatment. I will not stand for it and they will be completely cut off because that is mean. I am not a doormat -- I will draw the line at that point. Nobody deserves that treatment. I don't agree that it takes time for them to adjust----that is unacceptable treatment no matter when.

I am like you and keep pushing myself also and I will keep doing that until such time as I can't. Just live your life, ignore them and rely on friends. Do what makes you happy. You are an amazing lady and have overcome the knee replacement wonderfully----I admire you so much. Hold your head high Paula and go out and do something special for yourself because you are worth it ! (Big hugs to you!)

In all honesty - how can they understand ? we look "normal" when the meds are working - and they see us going about our lives. They can't get into our heads and know the constant strugggle and energy that it takes to put up that "normal" image ( why do we do it ??)
I guess I do it for me - I don't want to be "that guy that is sick " and it seems like you may be the same ( you also are younger onset like me )
I know I have told my friends - they all asked polite questions - but then they ask me to go walk the Katie trail - or think nothing of parking far from a restaurant not realizing how difficult it can be to walk if I am in a down time - and I don't want to say anything - cause -well I 'm not entirely sure why -

But that is why I feel ( and I am sure all of you do too ) that we are alone in out lives fighting this -

Hang in there !

It's important for you to get help when you need it. Sometimes it has to come from other places though. Family members often don't want to or can't face facts. While you are still able, get support from a local group, a good friend you can trust or an online group like this. Your symptoms will become obvious and have to be faced by your family eventually. Don't be too hard on them as they don't want you to be sick. I have gone through this with my brother and know it's hard but you can do it. Love the good days and be gentle with yourself on the bad ones. Mimi.

I'm so glad I found this place!! The value of your friendshp is TREMENDOUS. My family doesn't 'get it' either, & I only have a select few friends who DO get it. They make up my skeletal "Suppot System". It is disorienting, heartbreaking & unbelieveable to have your own flesh & blood brush you off, but I sense they truly don't want to understand.. They don't have any time for it, either. I used to be in a perpetual state of shock & grief over it all.
My last resort is now before me; the DBS surgery process. Please: DON'T make the mistake of waiting until you have LESS ON TIME than OFF time....the process from testing until your surgical implants are functioning well can take up to over a year. I am pushing my pre-testing for surgery to get started ASAP, due to having only 1 &1/2 hr. of ON time inside a 4 hrs. schedule. It doesn't feel very "safe" to have waited this long. I was in denial, scared, not ready for too long. I'd have done it last year if I had realized this. I have the added nastiness of having to drive 2 & 1/2 hrs. over a mountain pass to the locale where everything has to take place, nowhere to stay, & no one to watch over me during the many phases of the process. People from the state PD resource centers next door to my state are proving BETTER at helping me than my own! So far, all I have is my 1st testing appt., [ not till 11/08/2010 ] becos the staff who run testing is too small, so I may need to get this done in the state next-door. I wish I'd already secured a secondary health insurance...

I was dx'ed with PD in 2002. I told my family and work so that they knew. I quickly discovered that they couldn't possibly know how I'm really doing unless they lived in my house. My immediate family understands. Things go on as usual except when I can't (somewhat complicated as a 6 year survivor of recurring cancer).

My In-laws (who are great) did not really understand how my PD affected me until they moved here. We see each other a lot, and they understand my situation far better than when they lived 9 hours away.

My point is that you probably will have to establish a new "normal" for you. Those (even family) outside your immediate family may never really understand your new "normal", or the fact that it is constantly changing as the disease progresses.

Those that ask, I tell what is going on with me, but, really, not many ask anymore. It's not that they don't care, they just don't see me very often.

I've got my immediate family, friends, and neighbors. I think I am very fortunate to have them. That's my new "normal". I hope you find your new "normal".

Good Luck!!

All the best,

Fred

I understand completely! We look normal when we are having a good day. most of my bad down time is at home. My husband understands, my son is trying to (he's still at home) but even my daughter who lives in the city doesn't really "get it" yet. And my brothers, forget it. I think they are all far enough away, they are in denial.
Work doesn't get it either. I specifically told them so that they would understand my "bad days" but it only seems to make it worse.
It's a very lonely condition. Most days my husband is very good about it but even he doesn't read up on it like I wish he would. He needs to know what "might" be coming.
That's why we are all here...for each other.

Hello again Paula, Be happy dont worry. Try not to let things you can not change upset you. I found it very empowering when i DECIDED TO TELL EVERYBODY AND ANYBODY. It is much better than trying to keep pd a secret. When i told the people I work with it put a name on something they already kind of knew. With regard to peoplw around you understanding and behaving supportingly. Tell them exactly how you need them to act, support, and behave around you when you are having an off day. I find the fatigue the most brutal of my symtoms. Needing a nap during the day is inconsistent with a good work ethic. Because I mwke a living in construcction sales and make my own schedual I can take the time out of the day as needed to rest. Good luck and good health.

thank you all for your reply's and comments...I have no intention of changing or giving in to this.. i guess all i can do is keep explaining that when i say hey i can't do this today that's that.. i'll push harder on the days i can... i do thank god for what i can do and always will and i do understand that when i have several days in a row that i appear back to normal (and when i say normal i am talking about "my norm.. how i have always been")that my fam finds comfort in that and may just forget or want to forget.. so i guess i have to cut them some slack too... thanks again

My Mom Annie 81 who just turned 81 in august has had PD since 2002 and she always has a couple hr stretch in the afternoon when she has just taken requip and she feels terrible
she cant wait to get sinnement dose somedays then she perks right back up
today I had to take her to neurologist ,who is going to try a slow releasing requip starting tomorrow
I live with my mom so shes not alone but some days its hard but we keep pluggin along
I hope u feel better later on today or tomoorrow