Hello


#1

Hi,

Like my profile says, I'm 40 and living in Sweden (although I' originally from Liverpool). I have 3 kids, the youngest of whom is 8. I was diagnosed a year ago. The impact on my life is difficult for me to guage. The meds keep me reasonably symptom free but this does change from day to day. Actually, since my physical symptoms have subsided I have noticed that my mood is very flat, and I seem to be rather apathetic - although it's hard to be sure that's directly down to PD.

I'm coping ok and am well supported but I'm reluctantly having to reassess my attitude to work, which I always threw myself into, but am now struggling to do. I'm really looking for ways to contribute to the Parkinson's community. I blog on Medium which feels good but I am looking for other ways to help. Any ideas?


#2

Hi, N1ck,

Sweden; what a great place live. I spent quite a bit of time in Kalmar  and used to drive over the bridge to Oland, what beautiful island that is.

You seem well geared up mentally to fight the dreaded and perplexing PD. Apathy and flat mood are, as I understand it, common with PD, particularly in the early stages as one is coming to terms with the diagnosis. Getting involved with the fight is a good way of combatting apathy or even depression.

With regard to wanting to get involved, I have understandably no information on what ways that can happen in Sweden. The “Get Involved” section on the Parkinson’s website (on the black bar) is very helpful.

Sponsored events, either taking part or organising are very popular. There many ways to sponsor from the ordinary to the crazy.

Lycka Till.

Jules77


#3

Thanks. I'm back in work now after the summer. One problem is that work tends to knock the stuffing out of me. I get so damn tired that the thought of doing extra things can be overwhelming. Still, there's no choice other than to make the best of it, and I will do what I can to support the community.


#4

Hey Nick, 

How have you been getting on with the forum? I think it's great that you'd like to contribute to the community. We've got a great group here and there are some fantastic Facebook support groups too. Let me know if you're interested in joining those. 

Being diagnosed can have an impact on your outlook, it is quite a shock for some people. Do you get good support medical and otherwise over in Sweden?


#5

Hi,

I'd be interested to know what groups there are on Facebook. In the last few weeks I have been preoccupied with my return to work after the summer and, this week, a lung infection - yay!

I cannot fault the medical treatment in Sweden, and I am lucky to be in the care of a really knowledgeable movement disorder specialist. My outlook is generally good but I have lacked a real connection to other younger sufferers. It can feel a little isolating at times...


#6

Hi N1ck, 

Sorry to hear you've been unwell, that sounds nasty! 

I think you'd like this group, Start Living Today PD https://www.facebook.com/groups/826553277476417/ 

It's ran by a really wonderful bunch of people, very positive and a real mix from all over the world (largely UK members though.) 

There's also the Young Person's Network https://www.facebook.com/YoungParkinsonsNetwork/ who run the website https://www.parkinsons.me/

Hope this helps, 

Kat