These groups are free to attend, they are a great opportunity to talk through the challenges and changes in your life that come about as a result of Parkinson's. The most important thing is being able to talk honestly with people that understand.
My Husband was diagnosed 12 years ago at the age of 31. I don't always call myself his carer, partner is a word that sits better with me. I've been facilitating this type of programme for a couple of years now and every time I learn something new and come to terms with how life is for us now. They give me a real boost and a fresh start at life.
There is no right or wrong time to attend one of these groups but I do hear a lot of reasons not to attend, "too busy" "I don't feel I need this kind of support" "I need someone to look after my partner" "I'm not ready to meet others in the same situation yet" "I'm working and can't get the time off". Whatever your situation if there is a group in your area this is an opportunity not to be missed and there are hopefully ways around some of these obstacles.
I read about the really positive experiences people have had through participating in the 'Path through Parkinson's for Carers / Partners' course, and I'm totally convinced that it's a really worthwhile programme; but as somebody who's alone with Parkinson's and repeatedly reads about the need for people with chronic conditions to take control (self manage / self care . . .), as well as the benefits of 'Expert Patient' type courses, I seem to find that the only 'Path Through ...' course running near(ish) to me this autumn is exclusively for carers. I've tried reading around the topic, but I still don't quite get why there are only either mixed courses, or courses exclusively for carers. As I said, I'm not questioning the benefits of the carers only course, and I may well have got totally muddled, I really am just trying to understand what's available, who it's available for and how it all fits together. Regards, J
Sorry for the delay in answering your question. I've had a chat with my colleague Graham who runs the self-management programme about your question. This is what he said:
The programme is still relatively new and is still being rolled out throughout the country. Improvements are also being made to the content of the course. Changes are made to the course based on feedback received as they go along.
You can register your interest in having a course near you and share your feedback about the need for courses for people living alone with Parkinson's (and what that might look like) at [email protected] or call 020 7963 3924.
They can also help you with further details about what's available and how it all fits together. In the meantime, you could try the peer support service at http://www.parkinsons.org.uk/peersupport to see if there have peer advisers who are living alone with Parkinson's.
I believe there should be a "Path through Parkinsons " for those with PD. I understand this is an excellent course and know several people who have been on it and are facilitators.
As someone who lives on their own I totally understand how the taking control campaign can make you feel a bit let down. When one has the support of family it is so much easier to have the confidence both physically and emotionally to do things and indeed with support to take control. However when you are on your own it is different. Parkinsons is an illness which in itself takes away feelings of control and many need an informed and empathetic approach to enable them to get the most out of life. This support can be accessed through your local information and support officer, however I know areas differ as to what's on offer
Parkinsons affects everyone differently and believe me everyone struggles at some point - most can only get to the point of self care/management when symptoms are under control, there are no other illnesses and you yourself are well supported.
I am reminded of comments by my daughter who is health care professional working in oncology. Patients who successfully "bravely fight" their illness are regarded as heroic but what about all the others who are not so successful , they should not feel diminished in any way.
Well done Jackson and every good wish for your journey through Parkinsons.
There are self-management courses for people with the condition. The courses are also useful for those who don't have a carer. Take a look at the page at http://www.parkinsons.org.uk/selfmanagement to get a fuller picture of what's available. If you still have questions, write to the team at [email protected]
Hi,
Thank you both for replying to my sometimes rambling thoughts. I did register these (just as rambling) thoughts with the relevant team, and also registered my interest in attending a suitable course, so I guess I'll wait and see. They didn't, however, answer my actual question then either, and I'm not sure that it matters really, it's just a passing niggle, but just to clarify, mindbodybalance is right: my question was around why there are mixed courses, or courses exclusively for carers, but no courses exclusively for PWP. And why choose to focus on courses for carers-only in areas where there are no mixed courses running? I thought that the focus was on supporting people to be more in control of their condition, and I know this involves any support network, but why not PWP only courses? In reality, I may well be unable to attend a longer course because they run during the working week and I wouldn't be able to get time off work ( I feel I need to constantly prove that I'm not going to take time off) so I'm not expecting an answer, just clarifying.
Thank you mindbodybalance for your thoughts; your words somehow always make me feel better .
J
A big thank you to you all for commenting on my post, I'm sorry haven't responded sooner...had a little holiday and then got out of the habit of checking the forum. You raise some good questions Jackson. Of the 16 groups this Autumn 5 are just for carers and partners. The others are mixed groups but the majority of people who attend them are people with Parkinson's. We are also trying out one evening and one weekend group to see how this goes.
It is early days for these programmes and we are still working out what works best, we also have to fit in with what us volunteer facilitators can do and where we can travel to. It is really useful to have your thoughts, when we are planning the next programme I'll make sure your thoughts are discussed.
Hi Funniemummie,
Thank you for your kind reply to my posts. I really wasn't posing my thoughts/queries to anybody in particular so it was good of you to answer. These programmes wouldn't run at all without the generosity and hard work of people like yourself so they rightly have to fit in around the volunteers running them. I suppose I was trying to follow the rationale behind the strategy, though when you think about the bigger picture, I guess it's all a fine balancing act: people with all types of conditions are being encouraged to engage in more self care (not a bad thing at face value) but the provision of a fair amount of the support for empowering various groups of people seems to be relying heavily on volunteers. And I do feel bad for having a bit of a (hopefully gentle) whinge about what is largely a volunteer run service :( but if such services are to be an essential aspect of self care......? well who knows, it's confusing. I'm not asking, just musing (more sleep, less musing might be a better balance :) Thank you again for posting a reply. J
In other words; to effectively self manage pd you need a constant support network working in the background.
The support needed is dependant on your own lifestyle choices but is usually provided by a dedicated care or care network, often family members.
For example you may require help to run a house which frees you to concentrate on managing your illness.
or you may just need support from professionals and other pwp/people regarding pill regimes or state of mind.
Whatever your situation you will need some dedicated support at some point.. Some of this gap can be filled by volunteers some need dedicated specialists.
The older you get the more care you will require, however well you manage your wellness.
You also need to factor in a contingency plan for sudden changes.
More focus on this area rather than the cure would be appreciated imo.
