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Ok ? time again

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Thank you so much Robyn for doing this ? thingy. And please tell your sweetie thanks to.

Heidi

Re: Ok ? time again

Ok as some of you know we did a ? thingy since before X mas. And I thought since we have so many new members I will ask once more and also ask for Part 4 of this.Here first are the first 3 ? we had. If you have not done this yet please do so. Yes we also would like to use your stories in our news letters.

1st ? was :

How long did you have RP ??

one yr. that we know of!

When where you finally Diagnosed with it??

August of this yr.

2nd? was :

How have you dealt with it since ??

Numerous ways, APPREHENSION,FEAR, DENIAL, starting to settle down now (I hope!!)

What is the worst Part of dealing with RP??

Feeling TOTALLY "out of control"-never knowing if tomorrow will be a "GOOD" or "ILL" day!!

3th ? was :

What kind of support do you have at home ??

Excellent, although when blessed with so much love - "THEIR" fears/concerns are great!!

How can your spouse or fam,+ Friends help you deal with RP ??

F-L-E-X-I-B-I-L-I-T-Y!! don't plan "ESCAPE" routes to any plans, just quietly be ready to change day's plan IF NEEDED!!

Now part 4 is a little harder but very important

also. Part 4 is for your spouse and Family !!!

Please ask you spouse and Family to help us get part 4 together.

Part 4 :

What is the hardest part in dealing with our loved ones RP ??

just starting retirement, so much freedom ahead, & she doesn't seem to see that we might be robbed of it!

wish she'd slow down a bit more, and then maybe the flare-ups wouldn't be so long

What could they do to help us to help them ??

Not much, she never listened to me befor, so why should things be any different now?LOL!

Seriously, just talk a bit more, about if it's really a good day, or as she calls them, and ill day!

Ok so PLEASE everyone ask your Spouse and Family. Now to all, if you have not answered any of the ? please do it now. That is how we all learn to cope with this cRaP. I thank you all.

Heidi

DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

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