To think no one understands

[racheltraff]

I have Parkinson’s disease- I’m 52 and diagnosed in January. I was doing ok but realise im still coming to terms with it.
anxiety has bit in a big way in the last few weeks and work is a problem as it’s very stressful.
PD is one of those chronic illnesses that people just don’t get . Especially as I’m not old.
if I had cancer people would be breaking their backs for me (I don’t mean to be rude to cancer patients)
i know life is shit but sometimes it’s rally shit

I don't really understand, but I'm willing to listen and learn

What bit makes it hardest for you? Do you have any support at home or work?
Is the anxiety part of the Parkinson's, or an (understandable) reaction to all that you are facing?

Both really. Anxiety is a symptom and it’s seems to have switched on in the last couple of weeks. However there has been something at work that has triggered this week too.
my husband is great I’m lucky he listens

tbh I don’t know why I’ve posted- one wants to hear this

I'm so sorry about your diagnosis @racheltraff and I know exactly what you mean about cancer patients too

Sometimes we just need to get it out of our heads.

Does writing a journal work for you?

I'm sorry you're suffering, OP. You've been knocked for a loop and you're still processing and probably grieving. I think that's very understandable. You probably don't show your emotions, as much as you could, because you're mindful of how they affect those close to you and you think it won't change things, anyway.

A journal will help a lot, as a pp has mentioned, and posting here can help. We hear you. You're not alone. 💜

We have parkinson's disease in my family, a cousin of mine had it, but I still know so little about it. I know it can be tremendously debilitating, and it was a condition my mother very much dreaded, but that's it.

I'm glad your husband is so supportive. You must be feeling so lonely with it.

My DD was diagnosed with MS just before her A levels. She’s at uni now, and hasn’t told any of her friends, though her flatmates knew she had a fridge in her room for meds (and the uni knows of course). But she says people do not understand it and she’d rather not have to explain constantly, be treated any differently, or dismissed with ‘but you look fine’.

I think the problem with most chronic illnesses is that most people don’t have a clue and don’t understand how it affects people.

it’s not that they are uncaring just blissfully unaware.

it is hard work having to deal with an illness and educate people, but I think you need to do this a few people at a time.

talk to your family and close friends. Tell them ‘I’m struggling with these issues because I have Parkinson’s’

if receptive give them leaflets or direct them to supportive and accurate websites.

hopefully if your nearest and dearest start to understand they too will educate others.

chronic illness is very lonely. I don’t have Parkinson’s but do have other things that are not immediately obvious and it is soul destroying when people don’t understand . But equally it is incredible when someone ‘gets it’ by listening and being alongside you and offering a friendly ear when it is feeling tough.

Sorry to hear about your diagnosis. It can be really anxiety provoking at these times, wondering what the future holds.

Do you have a PD nurse specialist who can offer some support? Are there any peer groups in your area? Can you access peer groups online? Can you access talking therapies via your neurology department, or chronic conditions department?

I think this is why support groups for particular conditions are so important.
Whether you can find one in person or an on-line group, I think it can be really helpful and supportive.

Parkinsons UK

I am so very sorry!

I got a cancer diagnosis a few years ago, had the op and the treatment and am now three years clear.

Now, the fuss people made over it all! Quite touching, quite understandable, given the PR The Big C gets.

One of my friends announced a Parkinson's diagnosis over the weekend. He is playing it down, but the lack of a reaction from our friendship group is marked, compared to the one I got.

I think it is lack of understanding of what the disease involves, the lack of a knock-it-on-the-head cure, and its slow progression. Almost like assisted aging. While cancer has immediacy, A Big Battle in the here and now.

I don't know if my rambly musings help, and I hope they don't make you feel worse....

My DM has had Parkinson’s for over 15 years. I’m so sorry. It is hugely misunderstood. You are right about the cancer thing comparison. Parkinson’s can be like a hidden disease. It’s so hard to explain to people.

What I can say is it is very individual. My DM and my best friend’s DM were both diagnosed over 15 years ago in the same year. They are now presenting VERY differently. One of the best things you can do immediately is incorporate as much exercise and movement in to your daily life as possible.

I'm sorry for what you're going through. Please seek all and any support you can get

I was diagnosed with an “old persons” disease at 32. I can’t even say the name half the time because it’s so ugly to me. I totally understand how you feel as if your youth has gone over night.