Hi all,

I don't know where to start... except to say I've just arrived, so don't close the site now :) Just as I've discovered the site today, I'm sure more people will also. People will come and go, as and when possible, so keep it here with agreement if people need more urgent answers, they can go to the main site as suggested in other posts.

However, for SUPPORT from other CHILDREN of PARENTS WITH PD, this is surely the place to be? :)

I went looking for a support group earlier today, because this weekend I realised this whole thing is upsetting me more than I realised.

Picture it: I was all happy, at a herbal centre with my wonderful supportive boyfriend, and we had the opportunity to speak to the lady who runs the centre who is full of wisdom and knowledge on herbs and flowers for healing, etc. While asking her advice on a few matters, she only made one very simple comment, but it opened up the waterworks ;-) all she said was: "... try it, because I can see you have a frown of worry when you speak about your father" and miss strong, tough, independent had to control herself not to burst into huge sobs, instead only tears came out as I leaned into my boyfriend to get control again.

When I found this main site, and began reading the posts by patients newly diagnosed with Parkinsons and about their fear, sadness and frustration for limitations, I cried again. So I am putting on a smiley face for the world, but realise now that it's actually affecting me more than even I realised.

Our situation is not very different through what most of you probably have been through already, or still will go through... I also realise no one single person experiences the exact same thing with PD. There is no formula, although some things are similar or common.

For the record, our story:

Once upon a time... there was pappa bear, mamma bear, big sis, middle sis and little bro. All was well in the Kingdom of happiness. ie. a happy family life. Then despite pappa bear being so healthy, in 1999 he had a triple heart bypass, out of the blue, when all he had up to then was tablets for high blood pressure. So overnight he went from being a normal dad, to a patient. His PD had not been diagnosed before the Operation, although we now believe it was imminent and the long hours on the operating table did not help, so by the next year, he was diagnosed with PD. After the bypass operation, most patients walk away stronger and better than in years due to open valves - not my dad. He ended up needing physio for walking, and struggled in one way or another.

Once diagnosed, he took his medication, and life continued as usual as it didn't affect family life at all, or even him at that stage. However, by 2005, my mom who is the caregiver, took a turn with her blood pressure, from being the sole caregiver. When she recovered, I made a promise to go through every weekend to help where I could. Whether it was to stay up with dad until midnight (he used to stay up very late then/doesnt' sleep much at night at all) so she could sleep, or just by being an added friend she could talk to, and try and have normal family life.

Initially I kept all this private, and only a handful of friends knew about the PD. It was only while attending a course a few years ago as I wanted to do counselling to help others as I tend to offer words of encouragement and support, that I realised why was I keeping it secret. it's not a sin, he didn't do anything to bring it on, he just got it! So I began sharing it with anyone and everyone who was interested, and a fascinating thing happened. As I opened up about something personal to me, others shared their own "secrets". Even people I knew for a year or more, suddenly shared their secrets too. An amazing time indeed.

Since then, I thought the fact I share it openly now, that everyone who knows me knows that is the struggle our family faces, that all was fine. Also, having a boyfriend whose father died from Altheimers, he understands the struggle in terms of my dad now having early dementia.

At this stage, my dad is still mobile WHILE on medication, which is during the day. If he eats protein, his medication is ineffective or is cancelled out. So the fact he can't have protein, he is permanently HUNGRY. I also read an article that says in advanced PD, patients begin to have hallucinations from the medication, which my dad began having towards the end of last year. He sees faces, or people, and asks us if we can't see them? He doesn't have the tremors, it's more the shuffle walk, and losing of balance, falling, etc. When he is "frozen" it stresses me, perhaps because I have not been trained in what to do, and he gets stressed from being trapped in his body, so it stresses the rest. He does not take medication at night, otherwise he gets symptoms of being over-medicated, so my mom is called many many times during the night to help him out of bed to pee. He now wets the bed a lot, sometimes 3 or more times a night, so my mom has to change the bed, etc. Even though he is getting confused, he still knows who we are, and where he is, but is starting to say some things that don't make sense. Also, in December while on leave, I would take walks with him, and noticed that he was getting lost heading for home. I know my heart will break the day he doesn't know who I am, but I am expecting it and know some of what to expect. He is also beginning to get to the wanting to roam stage, so I've been preparing my mom on some of what the future behaviour is going to be like.

Right now, it just makes me sad to see the two people I love so much, struggle like this. My dad with the illness, my mom supporting. When I saw William & Catherine exchange their vows during the Royal Wedding, I cried when I realised that is what my mom has done: IN GOOD TIMES AND IN BAD, IN SICKNESS AND IN HEALTH - she is upholding those vows and I told her how proud I am of her. The decision to continue is hers... we as children can't tell her, right, dad is now going here or there, it's up to her ultimately. I believe only when she can't do it anymore, will we look at alternatives. For many years I said I would quit my job and move in and help them, but my mom didn't want me to do that as I have a good job and can help in other ways. I also said I'd never want to see him in a home, however, I never realised how bad things may get. We are not trained to deal with someone with dementia who refuses to listen and may harm themselves or others. I will continue getting as much info as I can, talking to others, to see what is best. To have someone come to the home is also not an option for my mom who does not want strangers there. So ultimately, my siblings and I go through on weekends, we have family time, and work around my dad's illness.

We make the best of it, and I try to see the blessings in all of it - like he is still here, we can still appreciate that, and each other.

I've rambled enough, as you can see, Smiley girl is also affected by everything. I don't believe I'm depressed as I love life, have a wonderful boyfriend of 9 months, a good career, am involved with various activities and hobbies, have joined a fun and challenging sport group to exercise and look after myself, so it's just the reality of coping knowing someone you love is struggling.

I'll check in here again tomorrow and see if the site has been closed :) I hope not, I look forward to hearing more stories of other children of PD parents.

*Hugs to all*
SmileyGirl