 |
 |
Just sent you my original letter usc. Please let me know if you receive it. Dont worry - i have no intention of taking over your vacation from you - . But maybe our daghters can get together? How old is your daghter? Jessica is 1 4 m\and Jane AMy 16. Hve to take into account that they too have their own agendas! See y'all soom hilary p.s. NB!!!!!! Remember to arrange for a wheel chair well in advance. Even if you can walk , take the wheelchair, because they take you ahead of the lines and that is the most tiring p art - standing in those lines. IMHO. And tehe distances that you have to walk iin t he airports are far!!! - at least to me. Leo Fuhr wrote: > > Hilary, Noope...didn't get your first post. A visit w/Michel & Barb would > be nice if time allows...remember, our teen dgthr is coming along and has a > touring agenda of her own. Also have two former MO friends who now live in > DC area who i need to see, too. Isn't nec for you to accompany me to visit > sen/reps....I've met both before in MO and feel comfortable seeing them and > will prob take dghtr too. Just booked round trip air for the trip....DC, > here we come! > Jeanette::)) > > ---------- > From: Hilary Blue <[log in to unmask]> > To: [log in to unmask] > Subject: Re: Info re Attendance Characteristics of PD > SupportGroupParticipants and Needs Assessment Instruments > Date: Wednesday, November 17, 1999 6:38 PM > > Jeannette, > Did you get my reponse to you news of your impending visit to DC? I > hhoope > so. I didnt realise quite how isolated o are. MAbe we can squeeeze in a > visit > to Michel and Barbara at Greensprings - just down the road from me. forgot > to > ask if you'd like me to accompany you on visit t senator/congressman? > forgive > brevity - i;m almost totally off. > tell me if you got 1st letter or i'll send it again. > > luv > hilary > > Leo Fuhr wrote: > > > > I'm 49, dx 47 and attend sporadically a support group that's about 75 > miles > > distant. That group has no one pwp or cg who is in their 40's so I am > the > > youngest member. What I find encouraging about the group is the sharing > of > > concerns and just daily life w/PD and when I have taken political info to > > the group like UDALL funding in the form of petitions or letters, most > > always seem willing to communicate their support of the increased funding > > for pd research but most aren't regularly in touch with their legislature > > members. > > > > I was invited to a YoungOnset support group in the city where my mds > > practices, but it meets in the early evening and I cann't drive that > > far(approx 80 miles one way), sit in a meeting and drive home all in one > > day/eve. I think the younger group addresses diff issues like contining > > working w/pd, possibly disability retirements, etc. Since that doesn't > > work for me to attend, this list is my most readily available support > group > > and to date I've actually met at least 4 list members in person at Pd > > symposiums or meetings or when they were driving past my house on way to > > vacation in Branson, MO. > > > > I also get support from many friends and family who altho not pwp are > also > > coping with their own health concerns(breast cancer, lung cancer, etc.) > > There are many brave, courageous persons who are successfully living with > > the challenges life has given them. > > > > Jeanette Fuhr 49/47/44? > > > > ---------- > > From: Sharon Y Habing <[log in to unmask]> said in part: > > Janice > > When you are looking for a support group you need to find a Young Onset > > Group, although they seem to be few and far between. Our group does > > have a few retired people and a couple who use wheelchairs when > > necessary, but we are all young at heart. Our ages range from 26-65 with > > a wide range of Parkinson's.