A very lonely ailment


#1

I don’t know about anyone else but I’m finding this Parkinson’s fight I’m in a very lonely battle.
It’s fine talking on here to people on their electronic devices but I have yet to find someone to talk to face to face in an honest and open way.
This is making me very introverted and I feel I am building a wall around myself to protect myself from the pain and sadness of losing the old me.
I’m ok with whatever new me emerges.
Others are having trouble saying goodbye to the old me
I hope this makes sense.
My confidence has taken a real bashing due to this illness.
Nothing and nobody is really helping.
It’s going to be one hell of the hard fight against this disease if I have to go it alone.
Hubby


#2

Hi H,

If you were over here mate, i would be there today .

Mal.


#3

I could message my phone number if you think that would help.
At least that would be a voice, someone to talk to even if its not face to face.
Hang on in there Pal
Just say the word

Mal.


#4

I can relate to this. I think the problem is (for me anyway), that friends and family have no idea what PD is and the length and breadth of potential symptoms that it brings and whats worse they don’t make an effort to find out. They think I just have a stiff neck!!

I suppose I can’t blame them, this time a year ago I had no idea what it really was. Didn’t have a clue I had it until the day I got diagnosed on the 24th August, which is fast appriaching. Wonder If I should celebrate my anniversary. Alone of course :stuck_out_tongue_winking_eye:


#5

It’s a difficult problem, isn’t it. I also knew virtually nothing about PD before I was diagnosed - even though I have a couple of friends who have it - so can’t really blame my friends and family for not understanding the complex range of symptoms.

I also go to a PD exercise class but that’s a bit of a mixed blessing. It does give me the opportunity to talk to other people about symptoms, treatment etc. but can also be depressing as I see people who are many years further into this than I am.


#6

Hi Hubby

Have you conideed doing the online self management course? After I was diagnosed I realised that I didn’t know a single person with Parkinsons but doing the course allowed me to meet others who had already been diagnosed - some for longer than me. I found the course really useful and thought provoking. We were able to compare notes on different subjects. I do recommend it. You will feel less alone.

Best wishes

Knine
Audrey


#7

Thanks for the replys.:face_with_raised_eyebrow:CDC

  • List item

Malc I’ll happily swap numbers witoThanks for the replys.
Malc I’ll happily swap numbers wito


#8

Sorry I fell asleep typing again.
I really tried to finish but it wasn’t to be.
H


#9

Malc I’ll send you a message


#10

Hi hubby

I am the same, no one over my side I can talk to, I write on here and that’s it as no one I know can understand what I am going though, if you pass your number we could speak over the phone or if you live near we could meet for coffee.
That goes to the rest of you reading this as we all need someone.

Kind regards
Raz


#11

Hi Raz, I logged on and the screen was fulll of red Rs. I thought you were going for a ful house :rofl::
Do you live in the UK or are you abroad ?


#12

Hi H ,
Are you still up?


#13

Hi Audrey,

This self management course you mentioned. Where do you sign up for it? Could you share the details.

Ta

Ian


#14

Hi Malc

:joy::joy: I was going to start to get that full house but I thought I would let someone else get a say too.:blush:. Yes I live in uk what about your self?


#15

Morning all

Well another night of no really sleep, but out with kids we are looking at different ahead buildings today :+1: have fun what every you all are planing.

Raz


#16

I just changed my bed linen.
Not sure that counts as fun.
Now I need a lie down.

Thanks for the chat Malc!

Hubby


#17

If you go to the Parkinsons website and put self management into the Search box it will bring up a list of courses - some online and some in different areas of the country.
Good luck

Knine

Audrey


#18

Hi Hubby,
I agree with your sentiments completely, I think it may be across we will have to bear. My local GP practice is very poor and has not offered me one bit of help, I don’t think they are interested at all, getting an appointment is nigh on impossible.
regards Cardy


#19

Perhaps you should ask any friends or family to get on the Parkinsons website and read up about it or go to the symptom information and print it off and give your friends and family copies of the information. I read all the information I could find when my husband was first diagnosed and I am sure it gave me a better understanding of what he is going through but you can not really know unless you experience it yourself.


#20

Thanks Audrey I have registered an interest