Family!!!!!!!!!!!!

Just been for my weekly early eve drink with my sister and told her that it looks like I might have to give up driving cos of the Parkie. She had a go at me about it saying well I'm not driving you so you had better make out that you are ok LOL!!!!!!! None of my family seem to understand and none of them have read anything about Parkie. I get absolutely no support from them. I actually find it quite funny. I think they are scared of the illness and find it easier to bury their heads in the sand. Oh well never mind.

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  • I have found that my family doesn't understand what I'm going through. I have a husband who left me one year after I was diagnosed. My oldest son seems to think PD is a piece of cake disease and my youngest son has not talked to me in almost a month because he thinks I don't appreciate him. Not one of the three has done a thing to find out about what PD is all about and how it's not the same for everyone. I have tried to tell them that I only ask for help when I am sure I can't do something on my own. Thank goodness for my dog and cat, without them I would be alone day, after day etc. I don't want to feel sorry for myself and for the most part I don't but if you were to talk to the oldest son he would disagree with that statement. It is all so hurtful and I'm so tired of the pain, the shaking, all the meds, just never feeling good and now I think I'm going to go have a good cry!!!! Thank you for letting me vent.

  • I am with the restless leg syndrome forum, and they are putting a leaflet together giving info for family friends employers etc, sounds like it would be a good idea for this site to. I suggest you have a look at the rls site and check it out. I too have problems getting anybody too understand. good luck Caz

  • Every day is a long day, my mind and my body are in a constant battle for control. It is exhausting, and having to explain my disease to every idiot who crosses my path, family included,is just too much. One of the hardest things I had to do was sell my car and become dependent on others for rides. But, no matter how it looked to other people, it was the right thing to do. One thing I could never live with is if I caused an accident and hurt someone.

    I am lucky to have a very understanding and loving mate who will ask questions and look for ways to make my life easier. But, there are times when I will catch him watching me, especially when there is a new tremor or symptom that develops, and I wonder what he's thinking...

  • I feel for you Cags3, my mother and sister are exactly the same...they both know nothing about PD and yet they "know everything" if you know what I mean. They are both very self centred. My mother assumes everything. If I dont live my life the way they would then I`m doing the wrong thing. They never ask how I`m doing with my PD. In my mothers eyes I am always the disappointment whilst my younger sister is "the golden child" and can do no wrong....they are like peas in a pod!!!..... My sister has never married or even been in a relationship or had kids....I`m the one who got married ( now divorced ) and had 3 kids, giving my mother grandkids she adores and my sister 2 neices and a nephew.....Get this one....when my Twins were baptised I chose not to have my sister as a godparent....because of this she boycotted the baptism!!!.....can you believe that?? and my mother and late father both backed her up (even they both turned up late!! ) when my 3rd was baptised I made the same decision...but she turned up to that one.....she nearly didnt come to my wedding cos I didnt have her as a bridesmaid!!!!......Like I said, self centred......Families huh???? Who needs em?

    and dont get me started on what my sister did when my grandmother died 10 yrs ago ( she or my mother have know idea that I know )

    Sorry to go on but thanks for letting me vent....I needed that

    Anyway back to my happy smiling self again.......and breeeeath!! :-)

    Take care

    Andy :-)

  • I feel like making a sandwich board and wearing it as as I go about my day. People only associate it with a tremor and have no idea that the tremor is only a minor part of PD. Other than shouting from the rooftops, how do we educate others. Hubby missed a lunch with his friends the other day thanks to Parkie. I went alone and for some reason they think he has MS. I had a chance to educate a bunch of them.

  • HI Cags,

    Families can be scared too. They see you on the outside and the non motor symptoms such a fatigue, indecisiveness, anxiety, depression will all look like it's your own fault if they don't find out otherwise.

    "There's none so blind as those who will not see". (And now I sound like my mum!)

    Have you tried a local support group and asked one of your family to come along with you? The local Information and Support worker for Parkinson's UK could also come out to see you but 'accidentally on purpose' when one of the family is there. S/he could perhaps back you up in that way.

    People get support from different places but you sound as though you would welcome a rethink in your family.

    Good luck

    Sue

  • I think it is so hard for anyone to understand PD becuse there has been some progress made. Maybe it's the Michael J Fox effect. Don't get me wrong he is the best spokesma for PD. Rarely does he seem to have bad days for the public, so when we do it must be us. It is so hard to get anyone to understand. People, friends have said,"thats not a big deal, they have pills fot that. They can treat tha." I feel suddenly very alone when that happens, because I feel that every new problem is a cry for sympthay. Sorry for typos and spelling errors, pill time in 10 mim usually a bit worse then. Havr a great day all.

  • well done JupiterJane. My husband had to sell his car . It was the right thing to do . I dont drive and had started to becaome very anxious especially going round corners and he would also veer to the centre of the road . I dont drive and it was also a big loss for me . BUT IT WAS RIGHT . If anyone has a passenger who tells them this please listen to to them because my husband wasn't aware of it himself

  • Thankfully our families are very supportive and I have educated as many of our friends as much as i can about Parkinsons . . They also have been very supportive to my husband and myself .

  • omg I hear you. I am singing the blues esp. on Sunday's and holidays. My daughter who's right around the corner from me broke down weeping one day saying "I don't want you to die" then she said "Stop calling me unless it's an emergency " and she enforced it. I did see her at some family events but feel like a lump on a log. THank goodness for my fellowships in faith and the PD community. And the social worker at my neuro's office has made time for me! unb elievable.

  • I think this issue is really common with families as they just don't understand what PD is. My hubby's brother and sister don't bother to visit, call, text or email even just to see how he is doing and I just don't understand it. People can certainly get on the Internet these days and look up PD to understand what it is. We are extremely lucky to have two wonderful daughters who call and visit regularly and that is really a blessing - they have researched PD and know exactly what their dad has.

  • Thank you for all your comments.I find it most helpful. x

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