Pass it on


#1

Now that you’ve decided to take control of your Parkinson’s, pass it on.

If you know someone who is new to the condition, share our latest DVD, New to Parkinson’s: parkinsons.org.uk/newtoparkinsons

Help people recently diagnosed with Parkinson’s take control of their condition from the start.


#2

Hello

Was this a successful campaign?

I am totally NOT in control at the moment although I am ever hopeful that I will improve in a short while. That will be when I have tried most of my 'getting back' to being 'in control' strategies.

I hate feeling like this! I was made for activity, rushing about and loving life!

 


#3

Hi,

I've read your last couple of posts and it sounds like things are pretty rubbish at the moment; this is, without doubt, a crappy condition and I also struggle to find any redeeming features. My main issue at the moment is not so much physical symptoms, but mood swings (a combination of unwelcome factors I suspect) and the current outpouring of worries about the future that I seem unable to stop. I'm not sure if the best way is to face it head on - this may bring about a potentially disastrous 'live for today' attitude - or try to put my head firmly back in the sand and inch it out bit by bit until I have to deal with the next symptom waiting to grab me. As to the 'Take Control' campaign, I am trying to use the bits of info and advice that make sense to regain some sort of control over my thoughts, if not the decidedly unpredictable future. I hope things  start to calm down for you soon - I'm not sure if I've worded that well, but hopefully it makes sense. I keep reading about 'acceptance' but I'm not sure I can ever really accept this and forget what I can't do; I am, however, working on acknowledgement (and 'accepting' that maybe that's as far as I'm going to get at the moment).  Take care, with thoughts, J 


#4

Hi Lin and Jackson,

Thanks for your thoughts on the campaign.

Lin, I'm sorry to hear how hard the last few days have been for you. As for the campaign, we'll be reviewing it this week. This wasn't a traditional campaign - it was more a reminder of the resources that are available and a sharing of what has helped others. So what was important here was that people talked about the ways of taking control, accessed the support that was available, watched the videos, etc.

Lin, you've said that when you're ready and feeling better, you'll go back to trying the taking control strategies. Jackson, you said that you're using the info and advice to try to take control of your thoughts.

If you ask me, this alone is real success. 

Take care of yourselves,

Ezinda


#5

Hello again. I am grateful for your concern.l As you say, it can be a very challenging condition.

 

 

 


#6

Hello Jackson

I have just read your post and feel concerned for you.  I almost feel that I don't know where to start to offer you strategies to help you feel *in control".  The main thing that stands out to me is your assumption that to live for today would be disastrous.  Today is all any of us have, for all the future is uncertain. If you can learn to live in the moment and make the most of every day.  Try to train your thoughts to be aware of the good things in life and celebrate them.  The way to train your thoughts and not allow your thoughts to run away with you is through meditation and the best way is through meditation using the breath.  For pwp this has the bonus of teaching good breathing technique which in itself helps to reduce the symptoms of Parkinsons.  If you like, think of the out of control thoughts as the unnecessary use of your available dopamine supplies - The way to take control of your Parkinsons symptoms is to keep a dairy to find out  tif there is any pattern to good days and bad days, there may be or there may not.  If there is what can you do to change the pattern of the bad days.

Notice your breathing without trying to change it - where does your breath come from - now place your hands on your abdomen and breath  into your hands and then out again.  See if you can make the out breath slightly longer than the in breath.  Eventually you may be able to find a space between the in breath and the outbreath and then another space between the outbreath and the next in breath which will always  be there waiting for you.  Take as much time as you need to breathe in and as much time as you need to breathe out. when thoughts come in as they inevitably will go back to focusing on the breath.

Finally, don't try to change the way you are feeling, but say to yourself it is ok to feel this way.  You cannot force your thoughts to change only allow the negative feelings to dissolve.

Hope this helps - a little taster of what  I teach

 

Warm wishes

J

 

 

 


#7

Hi,     Thank you for your thoughts and advice, it really does make sense - though I guess I hadn't realised I'd rattled on quite so much until I read your post. I think my 'filters' regarding what I'm putting down are a little skewed at the moment so I'll stop there, but I will give it a go.  Thanks again for the advice, it's appreciated. J 


#8

Jackson - 'I hadn't realised I'd rattled on quite so much until I read your post'

Thank you so much - you have made me laugh out loud. Please don't disappear but let us know how you are getting along from time to time.

 


#9

Hi,

Will do. smileI really  must write posts in draft before putting them on the forum. I am also working on being a little more succinct but the combination of Parkinson's, hormones and natural inclination do seem to be somewhat hampering my progress. Oh well, off to try to change a faulty shelf unit without over explaining the problem and causing total confusion - we'll see. 
J