[carya]

How do I best communicate to my family and friends that I have Parkinson's? I want to give them accurate, easy to understand, information on what it means to have Parkinson's: how it affects me, and how it might develop. Are there movies, or books that might give an overview?

Thank you!

[TexasTom]

Originally Posted by carya

How do I best communicate to my family and friends that I have Parkinson's? I want to give them accurate, easy to understand, information on what it means to have Parkinson's: how it affects me, and how it might develop. Are there movies, or books that might give an overview?

Thank you!

Newly Diagnosed | National Parkinson Foundation

Telling Family About the Diagnosis | National Parkinson Foundation

For the majority us, when first diagnosed, not much really changes. I think it is harder on our families of not knowing what to expect.

[Nan Cyclist]

Many people have told me that my book has been really helpful in communicating PD to themselves and others. One woman told me she read the whole thing to her young daughter two pages at a time.

If I Can Climb Mt. Kilimanjaro, Why Can't I Brush My Teeth.

[Jomar]

I would hope after the official diagnosis is told to family /friends, most would look up info so you don't have to repeat the PD basics over and over...
A good link or 2 or a printout for those that don't go online much..

Part of it depends on how bothersome/severe your symptoms are .. your PD may not become the worse case scenario as often read about online..so why stress family out ahead of time if it may not progress to that level for many many years..

And, some will stick their head in the sand and not want to know much at all about it.
Just the way they are..

[carya]

Originally Posted by Jo*mar

I would hope after the official diagnosis is told to family /friends, most would look up info so you don't have to repeat the PD basics over and over...
A good link or 2 or a printout for those that don't go online much..

Part of it depends on how bothersome/severe your symptoms are .. your PD may not become the worse case scenario as often read about online..so why stress family out ahead of time if it may not progress to that level for many many years..

And, some will stick their head in the sand and not want to know much at all about it.
Just the way they are..

Very good advice! Thanks you!

[soccertese]

i sent everyone not living with me a letter, i wanted to keep my pd private at that time except for selected people. i described how i was diagnosed, how sure the neuros were in making their diagnosis, what treatments were available, what my prognosis might be in the next few years and when there might be a cure. saved me a lot of emotional stress.

i also emphasized that except for rare forms of the disease it wasn't inherited, i didn't want my siblings worrying nor my parents feeling guilty that they gave me some bad genes.