I have been visiting this site since my early retirement in 2009. I seldom miss a day though I frequently filter the posts reading only 10-15 % on average. I have watched the names change recognizing a turn over that I estimate to be 2-3 years of involvement.
This leads me to a question to the current population. How long have you been an active participant of this site? Another question is going to be harder to ascertain.... If you stopped participating, why? I hate to think that most of the many individuals that have participated in this site have stopped because of an inability or worse, total infirmment.
Written by
etterus
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I participated very actively for several years. However, I have found that lately there there is just a small group of people actually posting and the site has become 'slow'.
I don't think this is unique to this site, Facebook groups also seem to have a very high proportion of readers rather than contributors. It might reflect the number of people who are looking for information rather than a sense community.
If one wants information the search function works well. it seems like every question has already been asked a few times. As for sense of community people come and go and the site continues on regardless, just like real life with or without us.
I had to be away for awhile. When I came back this time many people are not around and I missed them but now I also must leave again for a time . I think this place is helpful to a lot of people, but many can no longer post and also everything has a season. Now it is someone else's turn God Bless you all. Be happy.
Hi determined56 and anyone else disgruntled with loosing posts. Write your post in Word or something similarly reliable, perhaps Wordpad. Then copy and paste into the open Healthunlocked post window.
Word has a better spelling tool too. That should be a good way of managing your post so that it doesn't get lost .
If you expect your post to be short but becomes long then stop and copy / paste into the HU window ASAP. For a short post probably not worthwhile.
Also, if you wanted to have a record of a whole thread you could copy and paste the relevant chunk into the word file.
I have been participating since being diagnosed in 20 13 to be precise October. I have found an enormous li helpful to understand not only symptoms but the general or around knowing one has an incurable and progressive disease. This is knots to indicate that I am depressed by my situation actually it has inspired me to live my life to the fullest, to enjoy my time exercising taking advantage my retirement. Many of the contributors feel like old friends and I love to hear their input on various issues. I continue to race walk about five to eight miles a day and participate in dance and various exercise programs. All you who participate I'm grateful and continue to read your posts daily.
I was diagnose with Parkinsons December 2014 . I am now 64 and retired. I like to exercise by swimming at least twice a week and going for walks everyday. I live in London so they is many historical places and museums to visit.
I have been visiting this site for about two weeks. I was diagnose with Parkinsons about a year ago. At the moment my right arm tremors. I go for walk everyday and twice a week at least go swimming. I can see people looking at my tremor ,it is not as bad as it was before I started taking the medicine which is Ropinirole 14mg.
I joined several years ago after my husband was diagnosed. I was off for awhile after his death but returned more actively this year. Since retiring I have been volunteering with our local Chapter and facilitate a caregivers support group.
Interesting question eterr us. I joined here from the beginning of the site. I have a few thoughts about the site participation. One is that there is the normal waxing and waning of sites and there are so many alternative sites now, I think Facebook sites are the current buzz.
People move on for many reasons, some are at a different stage than when joined and have different needs some get fed up over various things and move on. I have many times but get drawn back partly because it's a familiar place. I leave when I feel the site is taken over with one person dominating. I do t think increased infirmity is a prevalent reason for leaving.
Hikoi..... Do you remember the Friday night parties that dominated the site for a long time? I think they originated from the UK. There would be up to 40-50 postings and resembled rather extreme inebriation at times. Ah the good ol days!
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