Simon Morris wrote:
>
> What affects quality of life in PD?
> A plea for assistance from the EPDA
>
> Quality of life is a critical issue for all associated with Parkinson's
> disease (PD) - people with Parkinson's disease, their families and
> caregivers, and their clinical care teams. Individuals and groups around
> the world have different ideas about what factors affect quality of life in
> PD. All these ideas are important, but as yet we do not fully understand
> the relationships between them. Increased knowledge of the interplay of
> these factors will improve understanding of PD.
>
> To gain this critical insight into PD, the European Parkinson's Disease
> Association (EPDA) are compiling a list of factors which effect the
> quality of life of Parkinson's Disease patients.
>
> How can you help?
>
> You can contribute by telling us what factors have most affected your
> quality of life or that of people you know with Parkinson's disease.
> (These can be factors that have either helped or harmed their quality of
> life)
>
> Below is a list of some factors.  As a start feel free to talk about them or
> add others.  Responses will be compiled into a world-wide study to take
> place next year.
>
> Information on the disease
>         How was the diagnosis delivered?
>         What aspects of this did you find helpful/unhelpful?
>         How much information has been available to you at and since
>         diagnosis?
>         How has this helped? Was there enough?
>         Could your care team have provided different information

I was diagnosed as as having "atypical parkinsons", it was never
confirmned or a specific one of the several parkinsons plus syndromes
was never given. I undestand now that perhaps a specific diagnosis
cannot be made. It would have been helpful if they had explained
that.




> Actions you have taken
>         What actions have you and your family/caregiver taken that have
>         improved your quality of life?
>         Is there anything that you would not do again?
>         How do you and your family/caregiver perceive PD?
>         How have you have come to terms with PD?
>         Do you feel that a positive attitude to PD affects your quality           of life? If so, how?
>
1. The first thing i did was to join the Parkinsn list. Still the best
source of information availalbe.

2. The second thing i did was to get on the mailing list of all 4 of the
American National PD organizations. A good idea.

3. I was unlucky enough to  get PD. I have a healthy attitude. Humor is
very important to me. I am also lucky enough to have a fine caregiver,
my wife.

4. We began to investigate altenative medicine since there is no therapy
available through  regular physicians. Some aspects of that have proved
helpful.

 Therapies that help
>         Are non-drug therapies such as physiotherapy, speech therapy,
>         occupational therapy helpful?
>         What other non-drug therapies have you found helpful/unhelpful?
>         What drug therapies have you used that have affected (improved
>         or reduced) quality of life?
>         What about other practical factors have you found affect                 quality of life?

There are no drug therapies avaiable for my kind of parkinsons.
I have tried physical therapy  and found it somewhat helful but not
affecting the fundamental aspects of the disease itself.
I have found most helpful my own analysis of the problems, such as
balance amd walking.

Interaction with the care team and support groups?
>         What kinds of meetings with your neurologist, primary care
>         physician, PD nurse etc. have been helpful/unhelpful?
>         What other elements of your relationship with these                     professionals
>         do you find helpful/unhelpful?
>         Are you a member of a PD support group or society (or similar)?
>         What elements of their support have you found                     helpful/unhelpful?
>
I am now operating a small support group out of my home. I am convinced
that it is very important for the quality of life. Quite frankly the
professionals in my experience have been a disappoitment to me.




        What other factors have affected/may affect your quality of
life         in  PD?

During the past several months I have had difficulty walking and now I
can't walk at all without assistance. In such cases a walker or a
wheelchair can be a freedom generating device. It can create a certain
degree of independence.


>
> Thank you for taking the time to read this; please now help to improve
> understanding of quality of life in PD by responding.
>
> We look forward to hearing from you. Please email your responses (or
> questions) to Simon Morris at [log in to unmask] by
> Friday 25 July. Simon is working ith the EPDA to help compile this list of
> factors.
Simon,


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