I'm not sure exactly how to introduce myself, as you will all tell i haven't been on a forum about Parkinsons before. To give you all a little bit of information about myself and why i've decdided to join the forum....
I am 28 years old and have a Son who is nearly 3. My Dad who is now 59 has got Parkinsons Disease and i have just been told a year ago they also said he is suffering with Parkinsons dementia... (a bit of a shock.)
I guess i've joined the forum to get to talk to other people in my situation, all my friends are great and i couldn't ask for better but i just feel like they don't completely understand.
The best way i can explain how i feel at the moment is that my son is growing up and get more and more of a personality and becoming a little boy, hes learning more and seems to be growing physically and mentally, my Dad on the other hand seems to be 'fading away' hes not the same person, he cant sit up straight, stand still without his legs walking off without his body, hes falling over, becoming quite irratible and frustrated with life (which i can't blame him)his dosed up with meds all the time and the most recent thing is that he is unable to swallow properly the muscles don't seem allow his throat to open back up again, to see him recently when it first happened and the panic in his eyes was just dreadful. I think the hardest thing with Parkinsons is that you have to watch someone suffer so much and you can never tell them that things will get better.
So to sum it up i guess i'm seeing more and more of Jacob but as i see more of him i can see less of my Dad.
I don't want to sound to depressing because my Dad is fabulous, he is an amazing man that i would do absolutely anything for him and he knows that, i know me having Jacob is really the only thing that keeps my Dad going and i'm so glad that hes been able to spend some great times with my son before any too bad happens. As for my Mum she is brilliant, she of course finds this all extremely difficult and with health problems herself they actually care for eachother but it does worry me that they won't be able to do that for much longer.
It was actually my boss who suggested to do something like this so i get to talk to people who may be going through the same sort of thing and maybe even give other people advice so (although i hate to admit!) i think he was actually right as this is actually quite amazing i could write and write for hours and hours which is never something i have done before but i think this could be a start of a good thing!
as a father i would want my daughter to do whats best for my grandson.
Firstly well done for getting here....good move. I've only been on the Forum for a few weeks and it's done me more good reading everyone's stories and first-hand accounts than any of my 'medical support network'.
I wasn't going to reply to you initially as our situations are so different, I'm 38 and the one with Parkinson's, but then I thought of my husband and mum who are supporting me the same way you are supporting your dad. I think those around the PD sufferer are sometimes forgotten at times. Ok, yes, we're the ones with it but it almost like your loved ones feel they should keep their emotions to themselves so as not to upset you, I had a 'word' at my mum about that the other day.
You sound like a close family and believe me that is so incredibly important. I don't know what else to say apart from keep talking, hugging, crying, laughing...it's not going to be easy but you will cope, you all will. In your post you say "I don't want to sound too depressing"...well, do you know what, you have every right to "sound depressing". You and your family are going through an unbelievably stressful and sad time. Never feel bad about being angry or feeling disappointed with the situation.....and it's so easy for me to say but try and not worry about the future. I know you say your mum has health problems too (could it be any worse) but just try and take it one day at a time, we can only deal with what's in front of us....who knows what the future holds....
Take it easy
PS your boss was right about coming to this Forum but don't tell them that - especially if it's a bloke....
Thank you for your post, which I found really touching.
You have done the right thing by writing because it is you who needs help. You are the one straddling the generations and the fact that you are the ‘knowing’ one between two innocents puts you in a position of responsibility at a relatively young age.
By asking for help, you have taken the first step in learning to live with PD, because this condition affects not only the sufferer but also everyone around them. You must never feel guilty for giving preference to the younger generation, since that is the natural order of things, but the fact that you want to talk reassures me that you will manage to find a way to accommodate the needs of your parents as well as Jacob’s.
I hope you have derived some benefit from opening up on this forum but, although I, personally, can only give you limited advice, I know that there are many wise people on here and I KNOW that they will reply to you. (I see two already have.)
welcome to the forum.
I am Caroline and I have PD.Lots of people on here are carers so can understand what you are feeling. The most important thing to me is my family so I want them to be happy and not constantly worrying about me. I have a grandson, aged 2 and he is the centre of our world, as he should be. Parkinson's is only part of my life, not all of it. Your Dad can still love his family and it is lovely that he has a daughter who cares so much for him.
Look forwards to chatting with you.
hi sam welcome to the forum[::smile:: im ali ihad pd for 10years ,there are lots of surport here for u and lots of info to ,people easy to make friends with as well,look for ward to speakin around the forum x
I'm a newbie in a similar position to you except I don't think I do as much for my dad as you do - we don't live that close and I work full time and have a child.
I'm older (40) and have a 2 year old daughter. My mum and dad are mid 60's and my dad was diagnosed 3 years ago. He appears very old - stooped, stiff, his speech is often laboured, he gets very emotional and has digestive problems etc. At the same time my mum also has health problems (stroke several years ago, asthma, nervous system problem that makes her fall) and, while she is very tough,she is finding life hard and is on anti depressants.
Like you mentioned, it's like the saddest days of your life watching your dad fade away are mingled with the happiest days, seeing your child grow up. I've got a lump in my throat now, everything is just so unfair. The best thing I did though was to have my daughter - they absolutely adore each other and it's like she has a special understanding of him - it's beautiful watching them together.
Hope you are well.
My husband is the Parkinsons sufferer . We have been married for 53 years and I always say that WE HAVE PARKINSONS .
It was at the same time as he was diagnosed with Parkinsons that I bought my self a lap top . I have found so much information by GOOGLING it has been my biggest
Any sympton/s that my husband has I just put in for example Parkinsons/sticky up toes , breathing changes , emotions etc the answer is always there .
Without doing this I don't think I would have been able to understand/ cope as well as I have to support him .
It's not easy an we both have have our frustrating moments MOMENTS LOL ..