Those of us on a journey as a person living and
coping with a long term health condition have one thing in common- we are all
seeking. Seeking for what though? for some it may be seeking a miracle cure for
their condition, others trawl the Internet with a thirst for information,
but we all know there is both good and suspect information on the web.
I think I fall into the latter camp, I need to find out as much information as I can about Parkinson's disease but this leads to information overload which can be a negative experience. One thing I am learning is how to filter information so I cherry pick what is relevant and discard the rest.
In relation to Parkinson's disease I have found two excellent sites which have an abundance of targeted and relevant information to choose from. http://www.parkinsons.org.uk/ has been a tremendous help as it has a clear uncluttered website with easy links to further information and support. It has fantastic support on it's forums where one can ask what we may feel is a silly question, but there are many other people with Parkinson's (PWP) who are on the same journey and hold a wealth of knowledge and experience to support and inform us. Parkinson's UK also has an excellent
I think I fall into the latter camp, I need to find out as much information as I can about Parkinson's disease but this leads to information overload which can be a negative experience. One thing I am learning is how to filter information so I cherry pick what is relevant and discard the rest.
In relation to Parkinson's disease I have found two excellent sites which have an abundance of targeted and relevant information to choose from. http://www.parkinsons.org.uk/ has been a tremendous help as it has a clear uncluttered website with easy links to further information and support. It has fantastic support on it's forums where one can ask what we may feel is a silly question, but there are many other people with Parkinson's (PWP) who are on the same journey and hold a wealth of knowledge and experience to support and inform us. Parkinson's UK also has an excellent
helpline: 0808 800 0303
Another website that I
have found is http://pd-junction.socialgo.com/
" PD Junction is a social networking site
that provides a warm and friendly environment dedicated to promote support and
hope for people with Parkinson's, carers, families and friends...well
anyone really whose life Parkinson’s touches"
As I have just joined I am still finding my way round but it is noticeable how friendly other members are, popping up to say a 'virtual' hello and welcome. they also have a Facebook presence too for those of us who love to natter!
My third source of knowledge is one that I must admit I was unsure of initially but one I told myself to act the grown up and make the effort because I owed it to my family to take control of my Parkinson's.
The Expert Patients Programme http://www.nhs.uk/NHSEngland/AboutNHSservices/doctors/Pages/expert-patients-programme.aspx is provided free of charge by the NHS and is a six week programme run in my groups case on a Friday morning, 10 to 12.30. It runs all over the country but in these days of austerity, it would appear that demand exceeds provision which is a great shame. The course is delivered by well trained tutors who themselves have a long term health condition, so they offer genuine understanding and empathy to participants. An excellent course book has been given to us free of charge which covers the course topics and indeed a lot more.
The aim of the course is to show us how to become an 'expert' patient and an active self-manager who can live in a healthy way alongside our chronic illness by learning strategies which empower us to overcome the many physical and emotional hurdles we will encounter along the road of our journey.
I describe it as being given a toolbox which contains tools of knowledge and strategies which we can dip into as and when we encounter such a hurdle. Being a 'expert patient' means taking some control and responsibility over such things as medication- making sure we are an expert in our medication as well as the GP and consultant, we need to be in an equal partnership and take responsibility to understand our medication and that includes WHY we have been prescribed a particular medicine, do we fully understand what it does, side effects etc and how to take it correctly.
Alongside this is healthy eating, it is our responsibility to take control of our eating and our weight, and make healthy decisions. Do we fully understand how some foods can alter the effects and absorption of medication? I must admit this is something I thought little about until now, but i have a new tool in my toolbox to help me work towards a balance which is responsible and healthy, not only for me but this will also help my disabled daughter. Hands up, portion control is my biggest problem, but i am more aware of this now and working on it! The course also encourages us to take time to fully understand what is in the foods we take off the supermarket shelves, how much fat, salt, sodium per portion does it contain, believe me you will be shocked!
The course also shows us relaxation techniques or cognitive techniques teaching us to use our mind to help manage symptoms. If we can get this right, and take the time to try it, we may even find we can cut down on such things as painkillers as we learn to understand and relax our bodies..
This is a mere glimpse into what the course offers, far too much to go into great detail in this blog, but,I am a convert, and that takes some doing believe me! At this time with another couple of sessions to go, I have learnt and gained tools that I can dip in and out of as my condition and body dictates and slowly but surely, become an expert patient with Parkinson's. After all, this is my body, I feel the aches and pains, notice changes etc, and I want to be an equal partner when discussing this with my GP, consultant and Parkinson nurse. I must add one last thing we have covered and that is how to get this across to the professionals by effective communication. How many times have you come out of the surgery or hospital kicking yourself because you felt you didn`t get your point across and you felt railroaded? This leads to pent up frustration and helplessness which will not do our bodies any good. If we become an effective self manager and learn and practise a few simple communication skills known as "I" messages, to convey honest feelings and avoid such statements as 'you' are not listening to me. I myself am not a terribly confident communicator but I can see the advantage of this and will be practising!
Well once again I have rambled, but i hope it is interesting to some!!
Until next time, take care of yourself.
Tony.
As I have just joined I am still finding my way round but it is noticeable how friendly other members are, popping up to say a 'virtual' hello and welcome. they also have a Facebook presence too for those of us who love to natter!
My third source of knowledge is one that I must admit I was unsure of initially but one I told myself to act the grown up and make the effort because I owed it to my family to take control of my Parkinson's.
The Expert Patients Programme http://www.nhs.uk/NHSEngland/AboutNHSservices/doctors/Pages/expert-patients-programme.aspx is provided free of charge by the NHS and is a six week programme run in my groups case on a Friday morning, 10 to 12.30. It runs all over the country but in these days of austerity, it would appear that demand exceeds provision which is a great shame. The course is delivered by well trained tutors who themselves have a long term health condition, so they offer genuine understanding and empathy to participants. An excellent course book has been given to us free of charge which covers the course topics and indeed a lot more.
The aim of the course is to show us how to become an 'expert' patient and an active self-manager who can live in a healthy way alongside our chronic illness by learning strategies which empower us to overcome the many physical and emotional hurdles we will encounter along the road of our journey.
I describe it as being given a toolbox which contains tools of knowledge and strategies which we can dip into as and when we encounter such a hurdle. Being a 'expert patient' means taking some control and responsibility over such things as medication- making sure we are an expert in our medication as well as the GP and consultant, we need to be in an equal partnership and take responsibility to understand our medication and that includes WHY we have been prescribed a particular medicine, do we fully understand what it does, side effects etc and how to take it correctly.
Alongside this is healthy eating, it is our responsibility to take control of our eating and our weight, and make healthy decisions. Do we fully understand how some foods can alter the effects and absorption of medication? I must admit this is something I thought little about until now, but i have a new tool in my toolbox to help me work towards a balance which is responsible and healthy, not only for me but this will also help my disabled daughter. Hands up, portion control is my biggest problem, but i am more aware of this now and working on it! The course also encourages us to take time to fully understand what is in the foods we take off the supermarket shelves, how much fat, salt, sodium per portion does it contain, believe me you will be shocked!
The course also shows us relaxation techniques or cognitive techniques teaching us to use our mind to help manage symptoms. If we can get this right, and take the time to try it, we may even find we can cut down on such things as painkillers as we learn to understand and relax our bodies..
This is a mere glimpse into what the course offers, far too much to go into great detail in this blog, but,I am a convert, and that takes some doing believe me! At this time with another couple of sessions to go, I have learnt and gained tools that I can dip in and out of as my condition and body dictates and slowly but surely, become an expert patient with Parkinson's. After all, this is my body, I feel the aches and pains, notice changes etc, and I want to be an equal partner when discussing this with my GP, consultant and Parkinson nurse. I must add one last thing we have covered and that is how to get this across to the professionals by effective communication. How many times have you come out of the surgery or hospital kicking yourself because you felt you didn`t get your point across and you felt railroaded? This leads to pent up frustration and helplessness which will not do our bodies any good. If we become an effective self manager and learn and practise a few simple communication skills known as "I" messages, to convey honest feelings and avoid such statements as 'you' are not listening to me. I myself am not a terribly confident communicator but I can see the advantage of this and will be practising!
Well once again I have rambled, but i hope it is interesting to some!!
Until next time, take care of yourself.
Tony.
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