Stay connected


#1

This is one we're familiar with here on the forum:

Share a laugh or a moan.

Try something new with buddies from a local group.

Make a bit more time for family and friends.

People with Parkinson's told us that no matter how you do it, staying connected helps you feel more in control.

parkinsons.org.uk/stayconnected

What are the ways you #‎stayconnected‬?

#takecontrol


#2

Staying connected is so important not only for the PWP but also  for their family, friends and colleagues. 

I never hide the fact that I have PD and will openly talk about my experiences. I recently was in the company of a man who was explaining about a DAT Scan this I related to and have informed him of the local group, not sure he is ready to come along yet but I have opened the door. 

I also told him about this site so you never know he might join I hope he does. 

I am a member of Parkinsons Uk and therefore receive both the Parkinson and the Scotland News which are h invaluabe sources of informaton. 


#3

I'm not sure that I'm with you on this one. What do you mean 'stay connected'? Perhaps it is because I have a loving, caring, supportive family, I don't see 'staying connected' as an issue.I have met some great people on this forum and would happily name them. I think that I am obviously 'connected' without realising.

Does that make me or help me to be+ 'in control'?

If i have problems caused by Parkinson's, I tell whoever needs to know -  whether it is my mother-in-law hugging me too tightly and pulling me over or the lady who opened a heavy door for me.I am a walking (not always) talking, Parkinson's Awareness Week!

There! I think I can tick the 'stay connected' box - and I hope that I will always be able to.

Ezinda,

Have you been to the Mervyn Peake awards exhibition in Putney Library? Is there any chance someone could post a photo and write-up/blog about it - maybe on other social media if not on here. I'd love to see it.

xx


#4

Lin,

Do you think being a part of a caring, supportive family who are open about your Parkinson's helps you to be in control? Does talking here on the forum? It seems lots of people think these connections make a difference. To be fair, I personally think this one is important no matter what your condition or situation. Tick the box, Lin!

As for the Mervyn Peake, I think my colleague Fiona who we've been working with on promoting Mervyn Peake would love this idea. 

I hope that someone has been to the exhibition. I could start a topic on here, but it would probably be more welcome if you did. I'm not in the office now (obvs) but in the morning I can post the link to the Flickr page with the entries. Have you seen these?

Ezinda


#5

Bethankit, 

Thanks for spreading the word. I've had a personal experience recently of a family member who has just been diagnosed with a long-term condition. Working here for so long, I assume that people will just reach out to a support group or a forum or a self-management group. This isn't always the case, as I've learned, and sometimes people just need that extra push...or just to know what's available. 

Ezinda


#6

Hello Ezinda,

The Mervyn Peake team have done a marvellous job in showing us the entries, especially art and poetry. Really, they could not have done better. I have looked at the pictures many times and can tell how hard it must have been to judge.

What I want to see is how the entries are displayed in the Library. I was intending to come to London to see for myself but cost was prohibitive. I entered a book of poems, and silly as this sounds, I want to see what it was up against in terms of presentation, appearance etc. I would like to see if it looks like it has been picked up and looked at. Daft, but important to me.

As to control etc - I am in control most of the time. Sometimes I lose it when I sink into what I call 'old lady mode'. At those times I am a crying, dithering, hopeless, unhappy mess!

What's next?

x


#7

Since being dx in 2012 I have joined Parkinson's uk and enjoy the newsletters also read threads on forum. 

I joined my local branch and have just become an official volunteer. I am comfortable with people who understand the condition and feel that I have made a new group of friends. 


#8

It's never too soon to get connected. My husband and I waited years before getting in touch with others with Parkinson's because we just wanted to get on with life. Once we got more involved and made friends we realised what we had been missing out on. We are youngish (43) but have made some amazing friends living with Parkinson's. We thought that it would be scary to see others who have had Parkinson's for longer and were not ready to face it. How daft, we met the most amazing, inspiring, humerous and brave people that we would never have me if it wasn't for Parkinson's

Local branches, exercise classes and support groups are great. Also a big plug for The Self-Management Programme (I'm a volunteer facilitator) it's a way of making connections and staying in control more info here http://www.parkinsons.org.uk/content/self-management-programme-path-through-parkinsons


#9

Like you I am a volunteer facilitator  for the self management programme. 

I saw myself as being too young to have Parkinson’s I was 51, but my husband was very proactive  and found this forum we are both members, and we both joined the local branch.  Through this I have made some new friends and just knowing that there is support out there is a huge relief. 

Connecting with the Specialist nurses, information support workers and Consultant are all invaluable. 

 

 


#10

 

Likewise funniemummie, I joined the local parkinson group and have never looked back. I joined the committee and help organise outing for those who are unable to due to lack of transport or help needed, I love it and I have made lots of friends as you and your hubby have. I'm glad you have both found your goal in life with this awful disease, stay positive like we all have to.

All the best - Sheffy


#11

When I first relocated to Wales from Manchester, joining a support group was the first thing I did. It was the best thing I did too. My group is amazing. Full of supportive, caring, fun loving and proactive people. The group has enhanced my life and lead to so many opportunities. I trained to be a volunteer facilitator and am looking forward to delivering my first 'Pathway through Parkinson's' self management course this Autumn. I can wait. The course is so empowering and though provoking.


#12

 

Hi Promise

  Good to hear from you on the forum. It is a good thing to join a support group and congrats on training as a volunteer facilitator, hope you do well on delivering your self management course!

I think with this disease we all have to focus on something and do our utmost to carry out anything we do at any cost and to have that bit of self esteem for the fact that we have achieved something.

All the best - Sheffy