How do I get my family to understand my conditioin?

[Court]

My husband and two adult children very rarely talk about Parkinsons. I understand that this is my husband's way of coping and he is always there. He never offers help but always gives it if I ask.

My daughter and son react very differently. My daughter will talk about it and often 'fusses' round me, which is her way of coping.

My son, on the other hand, never mentions it. I did not realise how he felt until he was printing something for me yesterday and saw my e-mails, which I must get round to deleting. He nearly had a fit and thought i was being morbid and should not use the site as a 'crutch' but try to forget Parkinsons.

He went home with his young daughter shortly after. By the way, both my children are in their 30's. He phoned me later to apologise, but said he cannot bear to think of me having Parkinsons. I was diagnosed 6 years ago and did not realise how he felt. I thought he had accepted my condition.

My son and I have always been very close so I understand that he is frightened of losing me. I tried to reassure him, but was wondering whether anyone else had experienced anything similar?

[jillannf6]

hi sue

oi can only say how lucky u r to have 2 such caring children

yru son is obviously v fond of you and does not want ot lose his mum )ie the person he has known

i had not had children durign my 33 years marriage and therefore will nolt have grandchildren and they r always a worry!!

my partner never looks at this site - it is not a morbid site at all apart 4m somettmes tielling it like it is

and parkinsons is a life sentence not a death sentence!

u know what i mean as i may welll have another 2 /3 years with the PSP but no meds to take 4 it other rthan pallliative care

on the psp site there are so many children whose parents have PSP and the children ifnd it so difficult to come to terms with losing the parent they knew

but hey i am being a bit morbid now

what i am saying iis that

I have been glad 4 the firsti tme in my lfie hta ti have not had children to see my decline

love jill and a

[Court]

Hi Jill

Thanks for your comments. You are never morbid and if anyone is entitled to tell it how it is, it is you.

Yes children can be a blessing and a curse! I understand my son's concerns, but he has to understand that every case is different.I do not know what the future might have in store for me and perhaps this is a blessing.

It is not a good time for him as he is going for another round of kidney tests next week and he always gets edgy, as do we all. My family do not enjoy good health. I blame my husband!!

Will let you know how we get on. Hope you are feeling better.

Sye

[shasha]

my daughter miriam is a bit in denial too but she can be quite horrid about me wheh i cant walk too well - also my son guy is very firm but suportive , whilst my other son dan = well he is and always will be so laid back he is horizontal - !!

[wifeofparky]

Our children seem to be coping well. They are more worried about me as his caregiver than about him. I am a nurse so I have resources that help me help my husband. I share a lot with my kids so they are understanding of what is going on. Our grandkids haven't started asking questions yet. They think it is funny when grandpa falls asleep in his chair while reading the paper. But they are 7 1/2 and he was diagnosed when they were 3 so they don't know any real difference. When I had my hip replacement my son came up from NC to stay with him for a few days and my daughter had him over for dinner daily till I got home. I am grateful for their support. Otherwise, I'm not sure what I would do. Sometime ago I printed a book written by a PD person for his grandkids. It explained why he shook and about his DBS surgery to help him. I printed the book for my daughter to show the girls when they start asking those type of questions.

[Court in reply to wifeofparky]

My grandaughters accept me for what I am. Nanna with a shaky hand and leg. My son, on the other hand worries about me and what I am feeling. He never talks about Parkinsons and thinks I spend too much time on this site and not enough on other things that do not involve Parkinsons.

He could be right, but I have a number of interests and never seem to have much time to feel sorry for myself.

[PatV]

My kids have their own problems. We are all trying to juggle. They feel free to chew me out when I mispronounce or am indirect. So I guess life is 'normal'. I am very determined to be both close with them and independent. Takes work (one day at a time).

[honeycombe3]

I'm surprised that after reading your emails your son doesn't understand your need for the site. I'm trying to think of analogy with male-appeal. Maybe that it's a safety valve like in a heating system so that you can get rid of worries/anger/temper without taking it on the family. Or perhaps that it's a form of counselling - if your GP recommended counselling you'd be having it no questions asked. To me it's the step before joining a support group: I'm happy to share online or to Skype with individuals but I'm not actively looking to share my leisure time with people just because they have PD. On another note, I am conscious of the amount of time I spend on the computer, much of it on PD related sites. I don't want my family to feel pushed out - I'm aware that they might feel guilty about not having PD & thus impotent to help me (even though they are my mainstays).

[Court in reply to honeycombe3]

Thanks for this. He didn't actually read my e-mails just commented at the large number of them. I probably used the wrong word in my question should have said accept rather than understand.

Like you, I do not feel the need to join a support group. Would find it difficult to express my feelings face to face. I much prefer being able to communicate without being known. If you see what I mean.

[goose63058]

I was diagnosed 5 years ago, my eldest son lives out of state, he has thanked my husband for taking care of me, but has never really talked about PD. My daughter told me she was very angry with me for getting PD, she knows its not my fault, but she's angry. My youngest son moved to Florida last year. He seems to be the only one to ask how my dr aqppointments went, and how I'm feeling. I don't think ANYBODY has read a book or magazine article about PD, and I must say I am very hurt that not one family member or friend seems concerned that I have a progressive neurological disorder.