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Parkinson's Disease

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July 7, 2014 Posted by | Research, Self Management | Leave a Comment

Explaining your medication needs

1. I have Parkinson’s disease which affects——————.details————-

2. Currrent medication for this is ————details———–.

3. My daytime medication effectively controls symptoms for periods of between 30 and 90 minutes on each occasion, effective about an hour after taking medication. I can be approximate but not precise as to the effectiveness or duration of action of each dose of medication as it does vary.

4. I have some limited benefit from the medication both when it is taking effect and when it is wearing off. The average time for which the medication is effective, is approximately 1 hour with half an hour on either side for ‘’wearing off and coming on’’.

5. When my medication wears off entirely my functionality, both physical and mental are seriously impaired

6. I cannot be sure that the effect of each dose of medication will be sufficient to enable me to perform or complete a particular task. The extent and time taken to sustain a task or to take it to completion are variables beyond my every day control .

7. The timing of medication is critical to me.

8. The timing of medication is a consideration essential to accommodating my personal self care needs in relation to hygiene, meal preparation and social events.

9. Side effects of my medications can cause me to experience involuntary episodes of drowsiness and to make me feel excessively sleepy. This drowsiness is the direct side effect of the medication taken to counter the effects of my Parkinson’s disease.This is a direct result of treatment prescribed and the absence of alternative therapies.

10. I am dependant on medication.

June 30, 2014 Posted by | Medication, Self Management | Leave a Comment

Managing your illness

How you manage your  condition when not under direct medical supervision makes a difference to your quality of life, your general health, and your usage health services.
Self-management takes time and demands interest in short you need to educate yourself  in  the many complexities related to your illness,

As I see it,youve got it. its not  going  to go away,your its manager.This was not somewere I suddenly arrived at, it was years after diagnoses and living with PD now it lives with me.
Our health care management colleauges GP Neuro,PDnurse.Physiotherapist,prescribe care by tradition but are increasingly the providers educating and enabling self-management. By  definition this is the tasks that individuals must undertake to live well with 1 or more chronic conditions.

These tasks include having the confidence to deal with the medical and emotional management of your condition.This is the difficult bit,in life without an illness  its not easy to achieve.In our present system its not really promoted,or financially supported,making people well isnt a good long term investment.Dont mistake what I am saying is not intending to undervalue medication or health professionals but it most certainly is easier and safer to prescibe care,than unleash you on yourself.

Accept we must not all want to choose this path and those who pursue it will graduate at different times,be it ten years or two .Patients are afraid to self manage,needing the reassurance of approval and the safety of direction from professionals.We forget a most important role,the patient as the educator,of professionals as well as fellow sufferers.There is some development in this direction.but in the main it is under-resourced and under researched.

Self-management programs are an effective complement to the work provided by health care teams..Programes location, staffing, and the extent of personal interaction between self-management educators and patients are fragmented and diverse
The overall objective of self-management programs should be to support and influence by educating the behaviors of all participants. While variation will always exists regarding the implementation of such programs ultimatley I feel you cant manage someones lfe but supporting choices is important empowering wellness,disempowers illness,live long live well,be happier.

Dont sit back and wait for the system TO DELIVER do a little DIY.
Manage illness
Take action,
Face problems,
Make choices.

Your on the way to Personal “Wellness ”.
Simple and easily grasped and accessible strategies,we know them ,but old habits die hard, so be it, choice made,I am not the mistress of self sacrifice.I know whats good for me whats not so I compromise.
Healthy diet,
Exercise,
Sleep,

Reset you goals, rebuild your dreams

It has been shown that’ Sharing responsibilities with patients and emphasizing the vital role patients play in improving health-related habits and self-managing their health conditions are key issues, regardless of diagnoses’.
One study found that 4 months after participating in  patients with diabetes mellitus showed significant improvements in eating breakfast, mental stress, aerobic activities, shortness of breath, and pain.
The way forward with this one ,well its upto you,and whatever you choose be it right for you at this moment tommorow may be different,if its the only exersise you undertake choice is always your own.

I cant be evangelical, but I can still improve my health.Im never going to win the health olympics but then I wouldnt enter,Im not a competitor.I prefer a fun run,thats mylevel of participation,my choice today,but the path unkown.

June 30, 2014 Posted by | Self Management | Leave a Comment

I’m Fine!

Walking down my local high street last Tuesday, on autopilot, lost deep in thought on some earth shattering subject like the scandalous state of potholes versus the whacking great local authority’s pensions bill, both funded by my Council Tax payments, I was oblivious to the world and to the individuals sharing my bit of pavement.

“Hi there! How’s it going?” asked a voice above the traffic noise, words that started my exit from my inner world. A good slap on the shoulder hastened the exit.

“Fine,” my subconscious replied out loud on my behalf.

I became aware of my assailment’s identity as Wee Jim the Painter, who, without the slightest invitation from me to go beyond the initial exchanges of greetings, proceeded to monologue on all the people scrounging from the state. He included such low life like the unemployed (me), the disabled (me), and the English (me). Paranoia was starting to take hold of me.

As I stood there not listening to Wee Jim, I pondered on the word fine. “How’s it going?” or “How are you today?” or similar questions are always answered by me as “Fine!” or, if I’m in playful mood, I drag out the syllables of “Fan-tas-tic!”

Last Tuesday I was far from fan-tas-tic, things were not going well and to reply to Wee Jim’s greeting as “Fine!” was nothing short of a lie. Each limb had aching bones, I was walking slowly with uncertain, clumsy feet, my speech was slurred, I couldn’t get the small change out of my pocket and I craved sleep.

In the newsagent, trying the simple act of buying a newspaper held up the queue of busy people behind me: I lost the battle with my pocket trying to extract a pound coin, then dropped my wallet which emptied some of its content on the floor. The assistant took the opportunity to serve some of her normal, sane customers whilst below I fought with the floor to release my credit card from its wet and dirty grip. Having won that battle, and extracted a twenty pound note from my wallet in preparation for payment, I rose to my normal height.

The assistant ignored me and her eyes went to the next in the queue – which turned out to be the right thing to do if not for the right reason. I had stood up too quickly and was suffering nausea and the world was becoming rather grey. In short I was fainting! (Fainting in public is not advisable – believe me – I’ve been several times. But will leave that for another day).

Fortunately I was able to hang on to the counter and avoid collapsing in a heap. I was now aware of the assistant’s horrified look in my direction, no doubt I was a funny colour. She snatched the paper out of my hand, scanned it, and thrust it back in my hand, along with a fist full of change and the receipt. I left the shop clutching this as I was in no fit state to resume battle with pockets.

So all was fine!

Looking back, I ask why hadn’t I told Wee Jim how things were really going for me? Why not turn to the people held up by me in the newsagent and apologise for holding them up and tell them that I have Parkinson’s? Would it do any good? Possibly.

Wee Jim might gain an understanding of what it’s like to live with PD, challenge his prejudices. His ability to get a point across is strong, pity he’s not on our side. I doubt it. Noel coward defined a boor as any person who, when asked how they were, proceeded to tell you. Wise words.

Strangely, upon reflection, I feel I was at fault in the newsagents. Like many Parkies, I like to look “normal” – I don’t have many of the obvious signs like a tremor. Clumsy and slow – yes. The assistant wasn’t naturally aggressive, probably just stressed out by an awkward customer who was possibly under the influence of drink. In these situations where our PD is taking control, I believe we have a duty to let others know. How can we expect understanding if we don’t let them know we are far from normal?

Hey, I’ve got PD, the sun is shining and today I really feel fine!

February 15, 2012 Posted by | Self Management | | Leave a Comment

The contradictory complexity of Parkinson’s disease

How you manage your  condition when not under direct medical supervision makes a difference to your quality of life, your general health, and your usage health services.
Self-management takes time and demands interest in short you need to educate yourself  in  the many complexities related to your illness,

As I see it,youve got it. its not  going  to go away,your its manager.This was not somewere I suddenly arrived at, it was years after diagnoses and living with PD now it lives with me.
Our health care management colleauges GP Neuro,PDnurse.Physiotherapist,prescribe care by tradition but are increasingly the providers educating and enabling self-management. By  definition this is the tasks that individuals must undertake to live well with 1 or more chronic conditions.

These tasks include having the confidence to deal with the medical and emotional management of your condition.This is the difficult bit,in life without an illness  its not easy to achieve.In our present system its not really promoted,or financially supported,making people well isnt a good long term investment.Dont mistake what I am saying is not intending to undervalue medication or health professionals but it most certainly is easier and safer to prescibe care,than unleash you on yourself.

Accept we must not all want to choose this path and those who pursue it will graduate at different times,be it ten years or two .Patients are afraid to self manage,needing the reassurance of approval and the safety of direction from professionals.We forget a most important role,the patient as the educator,of professionals as well as fellow sufferers.There is some development in this direction.but in the main it is under-resourced and under researched.

Self-management programs are an effective complement to the work provided by health care teams..Programes location, staffing, and the extent of personal interaction between self-management educators and patients are fragmented and diverse
The overall objective of self-management programs should be to support and influence by educating the behaviors of all participants. While variation will always exists regarding the implementation of such programs ultimatley I feel you cant manage someones lfe but supporting choices is important empowering wellness,disempowers illness,live long live well,be happier.

Dont sit back and wait for the system TO DELIVER do a little DIY.
Manage illness
Take action,
Face problems,
Make choices.

Your on the way to Personal “Wellness ”.
Simple and easily grasped and accessible strategies,we know them ,but old habits die hard, so be it, choice made,I am not the mistress of self sacrifice.I know whats good for me whats not so I compromise.
Healthy diet,
Exercise,
Sleep,

Reset you goals, rebuild your dreams

It has been shown that’ Sharing responsibilities with patients and emphasizing the vital role patients play in improving health-related habits and self-managing their health conditions are key issues, regardless of diagnoses’.
One study found that 4 months after participating in  patients with diabetes mellitus showed significant improvements in eating breakfast, mental stress, aerobic activities, shortness of breath, and pain.
The way forward with this one ,well its upto you,and whatever you choose be it right for you at this moment tommorow may be different,if its the only exersise you undertake choice is always your own.

I cant be evangelical, but I can still improve my health.Im never going to win the health olympics but then I wouldnt enter,Im not a competitor.I prefer a fun run,thats mylevel of participation,my choice today,but the path unkown.

November 16, 2011 Posted by | Self Management | , | Leave a Comment