Parkinson's Blog

[nellie58]

Hi again..I have started writing blogs at Beingnella.com about surviving Parkinson's. My husband was diagnosed nearly 25 years ago. It is from my point of view as his primary carer. I would love to know what you think and I am happy to have suggestions for topics. Thanks for reading 😀

[Hidden]

Hello Nellie58

Thank you for writing your blog which I have just read. You have eloquently conveyed how this disease affects more than those who receive the diagnosis. Support and a simple meaningful "how are you" are so important.

My own experience has been mixed since diagnosis. My husband has been very supportive, our children were in their early 20's and seemed to take my diagnosis in their stride, as did most friends. However, there has been rejection from close family, my sister has never once asked after me or seen me because "it upsets her too much". A dear friend said to me the other day "if you stay as you are now it's fine", it seems to me that there is still so much ignorance about this disease.

You are so right there is humour and life with Parkinson's is so much better for it. I have recently lost this but hope it comes back soon. Thank you once again, keep blogging.

[nellie58 in reply to Hidden]

Hi Lovepug, thank you for taking the time to write to me! I think I am going to enjoy writing these blogs. I am sad to read about your sister but unfortunately sometimes those closest to us do not behave the way we would expect them to. I feel sorry for your sister, it is actually her that will be missing out. It is a bit of a pathetic excuse that it 'upsets her too much.'None of us know what is around the corner. I must say over the years a lot of people have slid by the wayside in our lives too, but the ones that have remained are awesome. I am going to write a blog on happiness soon...we have to happy! You take care 😗

[grower in reply to nellie58]

I'm guessing the sister is going through her own grief in a way. Grief to know that she's losing her sister in the way she's always known her. Hopefully she'll soon realise her sister is still there :/

[Hidden in reply to grower]

Dear Grower

It is a nice/generous thought but my sister does not have one redeeming feature in her whole narcissistic body. Luvpug

[Hidden in reply to nellie58]

Dear Nellie58

Thanks for taking time to respond. I look forward to reading your next blog. Lovepug

[parkie13 in reply to Hidden]

What I have noticed people do ask you how are you but really all they expect is I'm fine they do not want to know. I do think some of them are upset by our condition.

[Hidden in reply to parkie13]

I always say I'm good when people asked how I am. I agree that most people are happy to stop there.

[parkie13 in reply to Hidden]

So do I. I'm just fine.

[grower]

Another great essay on life with PD. Loved how your kids have handled things, as well as encouraging "Daniel". Small suggestion, if you can figure out a way to embed the link to your site in your post that would make it easier for others to follow.

Looking forward to your next one. Might be a bit to touchy but If you're looking for topics how's the sex life? Or at least the intimacy/staying close physically? Come to think of it maybe that topic would be later....

[nellie58 in reply to grower]

Thanks for the tip grower. Hmmm I will ask my son how to do embed the link Lol re the sex life topic...maybe a lot later 😉