Hi there, I have no idea if this is the right place to introduce myself but I wanted to say hello and how helpful all your posts are- I am 41, my husband was diagnosed in 2009 with early on set pd, we have a 7 year old little boy and I am really struggling with it all at the moment. So to know that other people will understand some issues is of great comfort and makes this strange journey less lonely. My husband has experienced a fairly steep progression over the last 6 months, both physically and mentally, he can no longer work and has very little awareness of the bigger financial picture (probably a blessing for him!), so I am now working as much as I can, I am self employed so it is a but touch and go, and I sometimes feel like I am losing my mind with juggling my husbands needs, home life, my little boy, work and all our financial worries. It breaks my heart to see my husband deal with all that he does on a daily basis- I can not imagine how I would cope but selfishly I also feel so desperately sad - it feels like I am losing my best friend slowly bit by bit. To get a bit personal I am also struggling in a major way with intimacy issues, I can't go into that now as I have to get my little one to bed but I would love some advice from others about some aspects of that and how they deal with things. I hope u all have had a good day today and though I am so sorry that we r all dealing with these challenges, it is good to know that there are people to share experiences with to maybe make things a bit better, (and so I stop boring my friends!!!!) xxx
I'm a PwP so I'm on the receiving end of my carer. I can only say how amazing the job you all do is. It's easy for me - I don't have a choice, and I can only do what I can do. It's my carer that bears the brunt of my moods, who has to pick up when I'm too tired to finish something, who sees the idea of a baby-boomer retirement slipping out of our grasp. So, you're not being selfish, you're being realistic and honest. And yes, it is a strange journey, isn't it?
Take care. Take all the help you can get. Join your local family carers. Ask advice about money. Don't stop boring your friends (or us). That's what friends are for.
Intimacy. Hmm . . . too little or too much?
Thank you so much for your lovely post- u have made me feel very welcome on here! Am travelling to work right now but I will reply more when I can! Just wanted to say a big thank you and hope you have a good day today!
Hi B and a warm welcome to you matey......i agree with everything Semelle says, it is easier for us because we have been given this horrible disease and have to accept it best we can, and read everything there is so are well informed. My Husband doesn't want to know too much though he is a great support and does lots for me when im not having such a good day. Generally we don't talk about it and strangely he has always been incredibly fit and when we go for walks i might sit a while and he can then step it out and enjoy a faster longer walk on his own....well 4 weeks ago he injured his knee and now he can't keep up with me!!! the tables have turned so now he has a little more idea what it can be like. He is shuffling along and i keep saying "whos got the parkys you or me"? difference is his will improve
You will cope together and with the support of your pals,and if they are true friends they won't be bored, they will be concerned and want to help you. The PD nurses are there to chat too....that is what i do if i am worried about any aspect of the disease, i ring them and it does help to get things off your chest. Also you have us on the forum....when you fancy a cry or a shout we are all here for you and each other. Life throws so much C*** at us sometimes doesn't it?
Try to smileask for help and look after yourself too....you are amazing and strong, believe it
all good wishes