Parkinsons Support

phaedra8, May 26, 6:25am
I have recently been diagnosed with Parkinsons. I was sort of OK with it in the beginning but now I find I am really angry ,I am not sure if I am grieving for the life I have lost and would like some support from a support group as I am feeling a bit lost. Thanks if you can help

craftylady1, May 26, 7:53am
Hi Phaedra. Sorry to hear of your diagnosis.

I have MS and am a member of the MS & Parkinsons Society. There is very good support and help there. Both in a medical way and in a social way. I didn't know anyone with MS, but go and help out there when they call me, and have met some lovely people. who actually know what Im going through.
They are very helpful, and very approachable. That's a good place to start.
All the very best.

phaedra8, May 26, 8:03am
Thanks crafty. I wasn't sure who to contact as I am having a battle with myself accepting the diagnosis and feeling a little anti.

craftylady1, May 26, 8:20am
Its tough getting a diagnosis like u and I have been given, but life goes on, and we have to adapt. Makes it easier to talk to people who go through the same thing, as sometimes even MrC, and my kids, dont quite "get it"

The first thing I did after diagnosis, was ring the society as I needed to talk to someone who understood. And they made an appointment for the MS resource nurse to come to my home, and she explained so much to me, and what to expect. And she is available . If not right then, she always gets back asap. Definitely a place for you to start.
I felt very awkward, the day I rang, but they made me feel very comfortable. It isn't easy to get such diagnosis, but talking to like minded people certainly helps

roshu, May 26, 9:48am
Such a shame that the information about the support group was not given to you by your medical people.To give a diagnosis and then leave you with no one to talk to about it, that is unforgivable, in my opinion. Good wishes to you and go and find some of those great people at the MS & P Soc.

honest-reliable, May 26, 9:55am
Try in the Health and Beauty section of TM there maybe a support section in there but certainly get your main support from where Crafty suggested. Your Neurologist/specialist would provide that.

phaedra8, May 26, 9:40pm
Thank you so much for taking the time to give this very good advice,I will ring them today. I promise :-)

craftylady1, May 26, 9:49pm
Here is the ph # Phaedra


There is a list on answering, which ext to press. I only know the MS extension

yogibearz, May 26, 9:59pm
Hi Phaendra.
I too have Parkinsons and was upset , angry and confused when diagnosed about 8 years ago. I am still young in my mind ( 62 years now ). You must get in touch with your local Parkinsons society field rep. they are a great help. I also don't mind answering questions on here if it helps. But in saying that we are not medical professionals and can only comment on how we have found things ourselves.
Believe me its not the end of the world even though it may initially seem to be.

craftylady1, May 27, 7:06am
Phaedra. wondering how you got on today

phaedra8, May 27, 7:43am
Hey Crafty.I didn't ring today as I have had a crappy day and am really feeling angry. I didn't want to ph up and make a pratt of myself, I need a good night's sleep and hope I feel better tomorrow. I actually don't know where this intense anger is coming from. Can't really talk to hubby at the mo cause the wrong words from him and I want to rip his head off " poor man " he is just as upset as I am,not a good combination.

craftylady1, May 27, 8:38am
That's ok Phaedra. I know with MS, some days are bad, some are good, some are REALLY good. I don't think MrC really understands, so I just keep my lip zipped. That's where it is good to have a friend u can vent off to. Sometimes he says things which make me KNOW he has no idea, and tries to fob it off. Maybe 1 day, the time will come when I cant cook him dinner (touch wood that doesn't happen. ), and then he might understand.I was very VERY sick in hospital last year, and I hoped he would get a bit more understanding, but. In saying that, he is generally pretty good though.

PLEASE don't leave it too long before making the call, and don't worry about feeling a prat. The ladies there will understand how you are feeling, and certainly wont judge you. They are the best people to help you out.

In actual fact, the 2 people who I see regularly, and who seem to understand the most, are my 2 oldest grandchildren. G/son is almost 14 and is a great help, as is his 6 .5 year old sister, who will do anything for me. or just snuggle up for a cuddle.

phaedra8, May 27, 8:47am
Cuddles are great aren't they. I think that is what I need more of. Thanks for being so understanding. x

craftylady1, May 27, 9:11am
No problem. always to to talk to someone who has similar issues.
And yes, cuddles are awesome. Master isn't quite so cuddly now, but little miss is. just love our cuddles

craftylady1, May 28, 8:08am
Bumping, to see how Phaedra is today

phaedra8, May 28, 10:37pm
Hey crafty. feeling a lot better mentally today, had a good cry yesterday and big hugs from hubby. today i am feeling very unstable but going to get my walking stick and go out for a wander around Rangiora it is such a lovely day :-)

craftylady1, May 28, 11:52pm
That's good to hear Phaedra. Nice day to go for a walk. I have just spent almost 3 hours at Riccarton Mall. what an exhausting mission. Hardly go to the mall nowadays. just too much. Difficult with a stick and all the people as well.

Good u had a cry. I haven't done that yet. wish I could but the tears wont come.

Have u made that all important ph call yet?

pricilla, May 29, 12:43am
Big hugs to you phaedra8

phaedra8, Aug 16, 4:16pm
Yes I have made contact crafty and waiting to hear back :-) enjoyed my walk and the lovely warm sun on my back.

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