Hi there Todd: I was going to wait until the middle of summer, after my surgery for treating my parkinsons to tell the community about my son's unique situation. I have had Parkinson's since at least 1994 but was not diagnosed until 1999. You know, treated for depression insted, etc. So I had my son in 1997 and could not believe how far into Parkinson's I was. When I left the hospital I shuffled out and was walking bent over. Hello!! Well, to make a long story short, my son has "cerebral palsy" and I can't help wonder if he doesnt have a syndrome from the Parkinson's I had while he developed during pregnancy. He is brilliant, but cannot stand or walk without two small straight canes (started on those at age 4). He has bradykinesia and intent tremor, and stiffness.
I would be happy to share any info with you. I would love to get any information regarding his condition.
Best Regards, redbird
Quote:
Originally Posted by Todd
Hi everyone,
I need a little help from the community.
In July, I will be presenting at the NPF Young-Onset Conference on the topic of PD and children. While my head is FULL of developmental theory and knowledge in regards to children, I do not personally have any of my own. In the past, I have literally worked with 1000's of children and talked with them about a parent, sibling, friend, or other loved one who had a disabling and/or life threatening illness. (As well as talking with children who've dealt with these types of health issues personally.) But I'm missing that "personal" element of not having my own kids as a PWP.
What I'm hoping is that you'll be willing to share stories of your personal journey with PD and your children. Comments they've made, questions they've asked, answers you've given (or not given and why), struggles (and successes) you've had with both young and adult children, and stories to share.
I would keep your identity private, listing what you gave me during the presentation as, for example, "Kelly M. from Minnesota, 46, dx. 3 years, two children ages 6 & 12". Or simply as "K.M." Privacy is imperative.
If you want to post stories here for all to share in, that would be great. (Like the one Carolyn recently told about Mothers Day). But if you want to keep your responses private, you can email them to me at Todd@PDTalks.com and I will keep them confidential.
I like the way my presentation is shaping up, but the missing element is the true human touch that only you all can bring to it, so I hope you'll help me, and eventually others, with your stories.
Thank you so much! |