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Where is the support?

#1

I am sorry if this seems like a rant but maybe it is....

Who can I talk to, who cares? From what I have seen no one ! ..My husband was diagnoised a year ago now. Since then we have seen a PD nurse last November who told us she was leaving so it wasnt really worth the visit even though she was really nice. Then saw consultant in April for 5 mins...... Husbands progression is noticable now but everyone ignores it....he went to GP about an issue to be told "Your better off asking your PD nurse that as I dont know much about PD"...what PD nurse? He replied "Welcome to the NHS".....not the answer he expected...

There is a PD support group here but it is more geared up to the 70+....I did go twice but as everyone wanted to talk about meds and themselves health wise,it wasnt good for me as we are nowhere near that age...scared the life out of me if I am honest.

Our youngest Son and his partner moved to the British Virgin Isles recently and that on top of the PD diagnoisis with my Husband had totally kicked me in the gut!!! 

Where do I get support,no one wants to ask how I am...only how my Husband is! I dont want people to think I am selfish because I am definately not....my family have always and always will come first....I just want someone to talk to me and someone who can understand how our lives have been turned upside down.......sorry for the long message and rant!!!

 

 

 

#2

Have a rant, you're totally allowed to here. PD invades more lives than just the PWP.

I know what you mean about the average age in some support groups. I've never been to one. In some areas there are groups for younger people, might be worth a look perhaps, try the link below when you're logged in here.

https://www.parkinsons.org.uk/information-and-support/local-groups-younger-people

Have you considered a call to the helpline number displayed on this website? Helpline: 0808 800 0303.

Hopefully this might be of use to you. I'll be on and off the forum throughout today if I can help.

Best regards,

 

TM.

 

#3

Hi Babesbrown,

Sorry to hear it's been difficult for you to find the support you need. Tractorman's excellent suggestions should help. Our Helpline advisers will be happy to talk things through with you so please feel free to give them a call from Monday-Friday: 9am-7pm and Saturday: 10am-2pm.

We also have a carer's section here: https://www.parkinsons.org.uk/information-and-support/caring-someone-parkinsons. You will find some useful contacts and tips to help care for yourself too. Hope this helps.

Best wishes,

Edwina

Moderation Team.

#4

 

Hi


I go to a working age group.

they talk about just the same things you mention, health, pills, partners go as well, a drink, a meal maybe, other activities beyond 'parky warrior' exercise on a monday, walks, or event/trip  i am prob within the younger set at 47 within that group of 50 or so people within that group. and i get referred at times as a youngster.

I guess I feel not too much in common with others because of age, I don't really wish to be or end up being the stereo typical parkinsons person.

#5

I do understand this feeling. I am dealing with OH's paranoid delusions (all directed at me) - when I told the PD nurse that I was finding this very had to deal with and that I could cope with the idea that I might have to wipe his bum, but these accusatory attacks were a step too far for me, she told me that some people have to deal with the paranoia and deal with the "menial tasks" - now that did not make me feel better, believe me!

#6

Rant away, your situation sounds remarkably like mine