April 23, 2011

I'd love to hear from you. Here's how to join in.

 I hope this blog will be a place for an ongoing discussion of issues we face in dealing with aging in general and chronic illness in particular.So I encourage you to join in. In case you're not familiar with blogs, here's how you can participate:

If you want to add some thoughts about one of the blog postings or ask a question, click on the "comment" link that appears at the end of any post and send your suggestions. If you're concerned about maintaining your anonymity, don't worry.  When you enter a comment and click on the "Post as" button at the end of the comment box, it will ask for your e-mail address and name, but that information will not be published when your comment appears. Also, you needn't use your real name.

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Blogs differ from traditional web sites and news articles, which are one-sided, by permitting readers to participate actively.  I encourage you to make use of that opportunity.

11 comments:

Randy Watson said...

John -- I'd love to see a discussion from you and your viewers about dementia which probably is near the top of the list of concerns of most of us regardless of whether we're dealing with Parkinson's or just with aging. What's the likelihood of coming down with it? Seems to me that I've seen lots of different estimates, some as scary as over 50% of us will get it. Is there anything that works to avoid or delay this fate? -- Randy

Hans Kraut said...

RAndy, I too worry a lot about dementia so I'd second that as a topic. But I'd also suggest that later we have an exchange of views about depression and how to deal with it. Depression often goes hand-in-hand with Parkinson's and it's also pretty prevalent among the aging in general.

Hans

John Schappi said...

Randy and Hans -- I hear you. I'll do some research and put together something for postings next week on dementia. Then I'll schedule depression for the next topic. I agree that both are major concerns for most of us. Stay tuned in. -- John

Santosh said...

Thanks John about ur concern about the people of their things to share. I love to read always ur blogs which is so impressive too. I think I don't have that much experience to share here but would Always love to read about ur positive think on it..
Thanks

jackieb said...

If LC has always been your model for graceful aging, know that you have always been mine! Thanks for the additional inspiration provided by your blog. Now, if I'd only follow your many examples...

John Schappi said...

Knowing me as well you do, you no doubt suspect, and correctly, that I don't always follow my own precepts.

John Schappi said...

Santosh - You inspire me with your hard working like in Macau trying to make life better for your family back in Nepal.

Suzanne said...

John -- you sound terrific! As you may know, I have followed the news and research on PD ever since my husband Bart was diagnosed in 1997. He did pretty well on the traditional meds until the doses he needed to feel good were high enough to cause hallucinations -- an unfortunate side effect of Sinemet for some folks. The good news is that there is yet another drug to control the hallucinations.

As a member of a PD caregivers support group for 6 years, I have learned from the fellow spouses and caregivers that PD can affect people very differently. So, while some things hold true for everyone (like the benefits of exercise and the effect of protein on Sinemet absorption), everything else seems to vary a bit. For example, the PD caused orthostatic hypotension (positional low blood pressure) for Bart, which only a few people in my support group had experienced.

The main lesson learned from these many years of dealing firsthand with a loved one with PD is that the community of PD patients and caregivers are often the best source of useful information. The docs don't "live" with the condition the way we do. Hope all your blog readers take advantage of the PFNCA programs (Parkinson's Foundation of the National Capital Area).

John Schappi said...

Suzanne -- What a delight to hear from you! I know how dedicated and supportive you've been with Bart.
Early on in my journey down this road, I learned the main lesson you cite. I was told that I have two diseases: Parkinson's Disease and John Schappi's disease. Or, to put it another way and paraphrasing a comment often made about Alzheimer's -- "If you've met one person with Parkinson's, you've met one person with Parkinson's."
But one commonality among Parkinson's patients and care-givers is the support and family-like feeling that we get in our community.

I learned the importance of that support years ago in my struggle with alcoholism and I'm experiencing it again now. If you haven't seen it already, you might want to take a look at the guest post that Loene did in this blog on the importance to her in her struggle with cancer of her women-with-cancer support group.
See http://parkinsonsand5htp.blogspot.com/2011/03/cancer-survivors-living-beyond-limits.html

Lisa said...

John, your blog looks great! Thanks for noting and referring friends to our Pelvic Floor and LSVT BIG programs!

John Schappi said...

Lisa, right back at you with the thanks. I loved working with you on the BIG and Pelvic Floor exercise programs. I'm really benefiting from both programs and you were great on showing me how I could easily incorporate these exercises into my routine

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