It sounds as if your daughter could use some information on the disease. I gave my daughter and hubby a book. '101 questions about Pd' I found it excelent they barely opened it. Then I took hubby with me to an informatinal forum,he understands better now , BUT he seems to over react or under react. a great deal of the time. I guess it is hard for people accept our limitations, especially family. My daughter is just totally in denial. Trys so hard to prove to ME I am OK . Hang in there,I hope I have at least let you know you are not alone. And hopefully someone has a good answer for both of us.

I think people are just clueless. They are like that about my husband who has PD. They just think oh, you are fine, you are normal & can do the same things anyone else can. They just don't understand, you can't always see pain, or the aggravation. I get so aggravated about that!

i think it is becasue it is so hard to see a person who was once so independant become so needy. i say this because i mourn the lost of my partener. i get angry becasue i fear the day when i lose him completely to pd.

eleven years ago i was dx with MS and i told all my famliy and they were all in denial. my oldest daughter even called my neurologist and had a huge fight with her over the phone. well then she refused to treat me any longer so i had to search for a new doctor. and that took me several years and four more tries. then last year they told me no you don't have MS you have PD. i heard that that is quite common. well anyway i told my husband and my mom, but i refuse to tell my daughters. they are in such denial about my sickness that i have found it better to just talk about other things with them and leave them totally out of my health problems. when it gets bad enough then they will figure it out. until then i won't tell them a thing.

dkpape.the same thing happened to me. i was dxd with ms also and that went on for 2 yrs. taking shots of avonex $$$$$$$.then a lady at church who had ms had what i would call a flare-up and had to be taken out of church it was just terrible,and then im thinking that has never happened to me ,so back to he dr,i was later refferd to a pd dr. and sure enough its pd!!,but we look healthy but if they just knew what it feels like on the inside ,iwould not wish this on anyonei do not know what people did before the meds were foundand developed. it had to be horrible....

My family does not undersand. Nothin at all,at all. they think it can't be that bad, if you are up walking around your suppose to be ok. I try to stay prepared, so on my good days I can run all my errands, because only knows what hell I will go thru tomorrow. I am on sinemet and valium . This seems to be the only thi ng close to helping me. when it helps i take advantage of it then suffer for wks before i have a good one. I always tell my children everyone needs someone, so gather up all the friends you can during your lifetime because you will need them most families turn against you when you are sick. This is coming from a sixty yr. old lady who has to rely on friends and they are truly a God sent. an3

Susanna, your daughter sounds like mine. Mines 45 and still lives with us. Wasnt for my 11 yr old granddaughter Id throw her out in a New York minute. Your daughter wants to do things her way and doesnt want any advice on how to do it. I would suggest letting her do it her way and learn through her mistakes.

i think that some of are children.find it hard to acsept that a parent is ill .i no my girls use to think if thay did things.i would die sooner.but we have now got to a level of under standing after a lot of tears.that i have good days and bad and there are some things i just cannot do.

Hi - I was told that I was the one in denial by a family member. As I sat in the doctor's office with my doctor, I asked him if he thought I was in denial. He said, Sherri, you wouldn't be sitting here talking to me if you were in denial. Then he asked why I would ask them that question and I told him what had been said to me and he said that it sounds like this other person (or persons!) is the one having a hard time dealing with it. He also said they aren't the ones dealing face to face with PD every minute of the day. All to say, it sounds like much as everyone else has said - your daughter's struggling with it. Or, forgive me if I am wrong, a bit self-focused and needs to be educated, much like has already been said. My kids have gone with me to appt's so they know what's going on - into the doctor's office with me - as has my husband. That might be a start. Has she sat in on an appt w/you? You could give her that book previously mentioned (101 questions - it's GREAT!/good info/easy read) and that may help. Your dr. should have free ones (many do) or write the NPF for one. Just even leave it on the table for her to pick up in her own time. Caregivers have an entirely different set of struggles. We live with it, they live with us. It's hard on everyone. My prayers for her understanding and your comfort

When my wife was first diagnosed with PD, our married daughter was in denial and couldn't understand why her mom was struggling to walk, couldn't keep up when shopping, and tired so easily. It wasn't until her mom ended up in a wheelchair for outside activities, did it finally register to her, that her mom was truely ill. Our married son, however, recognized and accepted the diagnosis almost immediately, and has always been very supportive of her hardship. Surprisingly, her close friends accepted her diagnosis, and have all been very supportive.

I have only been dx for 9 months. My wife some times will ask me to do a lot around the house. I do the best I can to finish but some days I cant get out of bed. On those days some times she will freak out because I could not do anything. On the other hand if I am working outside or inside she will insist I stop and go take a break or to take a nap. It makes me crazy but I think it takes time for people to realize that pd changes like the weather some days you are "normal" and the next day you cant walk 3 Feet.

Hello to all! I sympathize and empathize with all of you. I send you all warm hugs! Is it really denial in some of our children or could it be selfish, self-centeredness (did I just coin a word?)? My 43-year old daughter hasn't spoken to me in 2 of the 3 years that I've had PD (she lives 4 city blocks away from me). My 45-year old daughter is very supportive and stops after work, every day, to see me. My 39-year old son, who has given me much grief throughout his bi-polar life, is trying the hardest. For once, he is looking at what I'm facing rather than himself. We are getting closer than we've ever been. Different reactions from children. It's heart wrenching to have one turn away just when you may need some help and support. For the one who doesn't or won't talk to me, I want to cry one second and take her out of my will the next second. I don't have an answer but I sure wish I did. It would sure eliminate a lot of heartache. I'm afraid to talk to her because she is so defensive about everything, always has been, and I just don't think I can stand the stress. I'm a worry wort and I just can't handle it, anymore. My biggest stressor with her is that she won't let me see my youngest granddaughter, 8 years old, who I babysat for 3 years from birth and bonded with. We are very close and it is hurting her as well as me. Sorry, I meant to just add to this thread but I always get off on ME!!! The one who really knows how I am changing from one day to the next, very rapidly, is my dear, new husband of only 5 years. My heart breaks for him as he lost his 1st wife to cancer 8 years ago. He doesn't need this extra burden.

Craftycat, that's a heartbreaker! I can't imagine turning my back on a parent of mine. In fact I didn't; my biological mom died of cancer 20 years ago, and though it was hard to face, we all spent as much time wih her as possible. Now, my stepmom is bed-ridden after some truly frightening back surgery. Strangely enough, it has brought us closer together than we have ever been. A little role reversal is sometimes a good thing; if only your daughter knew that!

I guess I'm pretty lucky; my family has been wonderful, though they're still in the learning stage (me too!). I wish I had some helpful advice for those of you having trouble with your families, but all I can think of is to keep communicating, even if that involves some yelling and tears. Unfortunately, communication has to be two=way. I don't understand how someone could just turn their back on a family member in need, especially a parent. Maybe time will heal whatever is causing that attitude.

Dear Susana, im 41 i was diagnosed 7 years ago(just after i gave birth).At that time i was still with my now ex partner. The trouble was all of my family suddenly thought that they were all experts in "parkys" and that i could more han i was doing , a spell in the hospital was what it took to make them realise that they know nothing. The plus side for me is that my brother came to stay with me and my son, needless to sayhe ha seen me at my worst.So good luck and take care my friend.

I agree no one seems to understand. You will never be able to get her to understand, The only suggestion maybe would have your Dr. talk with her but there again. The Dr. doesn't know too much about this disease. Sometimes I feel like getting my family together and beg for their mercy to try and u nderstand. Some people can do more and some do less, I do hear of some working, I don't know if its because they are younger or what. I am 67 and live by myself and when I'm having a good day I try to do everything chores and things, then I am set back for 2 wks. I try to go see my mother on these good days. Oh what a miserable life. I always thought Parkinson was just shaking, I didn't know it made you so weak and exhausted all the time.

an3