Dates on our posts

[johns65]

Was wondering if our posts we make have a date on them instead of "three months ago". Sometimes I am reading post that are "two years" old and decide it is too old to reply too. Just wondering if this is other people's issue also. Just a suggestion. Thanks, Joyce

[enjoysalud]

Hi Johns65, It doesn't bother me nor do I think it needs to be improved. just subtract the time posted from the present. Yours was posted 4 hours ago. I live in Los Angeles so I just subtract it from LOS ANGELES time...not knowing if you have posted from UK or South Africa or Australia. It makes no difference because you have posted 4 hours ago.

The other is that sometimes I will respond to a posting 4 years ago or more. Sometimes I get an answer and sometimes not, but that also happens with a recent posting. You cannot control getting an answer.

Sometimes I respond to a posting because I am seeking information, sometimes I do it because I feel it might be helpful to the poster, and sometimes I do it because it helps me.....cathartic.

My son died from PSP May 4, 2017. His very FIRST symptom was Double Vision. There was a contributor in the PARKINSON'S Health Unlocked who years ago (my son was first DX with Parkinson's so I read the other for two years) who often wrote of his DOUBLE VISION but DX with Parkinson's. I looked him him up and wrote to him inquiring how he was doing and how was his DOUBLE VISION. Had it progressed, etc. He never answered.

I hope for an answer, but do not expect one.

I hope this is helpful.

Margarita from Los Angeles

[raincitygirl in reply to enjoysalud]

Did you ever try a private message Margarita?

It may not work if the person has left the site, but HU will forward a notification to the individual's home email.....

Anne G.

[enjoysalud in reply to raincitygirl]

Hi raincitygirl......thanks for taking the time to suggest a private message. I did try that about three months ago. He was a member of PD. I got encouraged by your response so I went to all of the listings of that particular person under PD. The last time he had posted was 2015. He's not listed in our PSP, but then it would be the caretaker because if he has PSP (as I suspect) he would be unable to do much writing on the computer (DOUBLE VISION AND GREAT SENSITIVITY TO GLARE). My son and he were DX with PD at the same time.

I do hope that both emails have been forwarded, but then I 'd rather "believe" that he is doing so well that no longer interested in posting in PD.

Thanks for your caring.

[GonnaMissDaddy in reply to enjoysalud]

Hi enjoysalad. I too, look at dates of postings that are years old and my mind races to imagine how the original poster might be doing now, (whether sufferer, caretaker or loved one...) in the devastating psp battle. If I answer an old post like that, it's to try to help others who see it, especially because my Dad with psp passed May 1, 2017. I'm so VERY sorry you lost your SON to the horrible disease! I can't imagine. We (here or any psp forum online,) don't often hear from parents of psp sufferers. Bless your heart. And, my dad's first symptom too, was the double vision and he too, was first dx with PD. I wonder how many people take a HARD psp FALL because it's not like anyone falling who doesn't have psp, it's like a tree falling because the psp robs them of the ability to break their fall so they land on the head. I wonder how many who die from a hard fall are never correctly diagnosed and on the death certificate it's listed as "accidental". I believe psp is WAY under-diagnosed! I like to believe psp will be granted more research funding when the true stats are eventually brought to light.

[enjoysalud in reply to GonnaMissDaddy]

My son never truly fell. He was so afraid (his major anxiety or worry next to choking to death) of losing his balance and falling that when he was up on his walker, I or his paid caretaker walked right next to him. He felt secure and we were there to grab him. He would beep his bell to let us know he needed help getting up from his chair. He never walked without us once he progressed. My son was just barely 55 when he died.

Margarita

[GonnaMissDaddy in reply to enjoysalud]

That's amazing that he didn't ever fall! My Dad would have been afraid of falling but PSP can disconnect the impulse control and that happened with my Dad. He fell so many times and most PSP sufferers DO take many falls in the time before they become bedridden. Again, I'm sad and so sorry this happened to your or to anyone's SON. Truly bad enough it's happening to so many spouses, fathers, brothers, mothers, etc. 55 is too young. May God bless you, until the time we all meet again and you're with your son again.

[honjen43]

We come to this site looking for answers and for support. If someone likes my post, even tho it is old, to me that shows the information has been helpful to others who are still on that journey. I too find that carthartic!

Maybe if we have a question or further information on an old post, it might be more helpful to make a new thread so that the question is brought to the fore and not 'lost' in the past.

I find the search facility here very useful. When I joined I was looking for answers for CBD. There was not much information here then, but I found my answers from others posting on PSP. I did feel disappointed in myself that so many were managing at home when I had precipitated my love into hospital care the moment it was 'too hard' to care for him at home.

I have learned so much from all posts. I feel grateful and satisfied that maybe because of my posts on CBD, others have joined us.

Because of the caring nature of those posting we have also attracted questions on MSA and other related disease, and even from people just looking for answers in desperation!

That's OK by me! The site works well. A little tweek of a date rather that rough timing could help in that a date is more specific and the reader can relate to a more specific time. Sometimes that might be useful.

It will not change the nature of the people it attracts! That is why this site is so helpful to others. Changing time period to specific date would not change that, but could make timeframes more relevant.

Hugs

Jen xxx

[raincitygirl in reply to honjen43]

Jen, I echo much of what you say. You were the first person to respond to me when I joined, and I went back as soon as I could figure the site out, and read everything you posted!

I also learned that old posts will come up on my news feed as if new, when a person posts on it recently- although some might skip that post because they think its old and they've already seen it.

I would like to know the month and date of members' posting: I've sometimes cross-referenced someone's posting and found the tag "a year ago" pretty off...

Anne G

[Kevin_1]

I have started a new thread on this because I really think we need some better tech. here.

[raincitygirl in reply to Kevin_1]

Hi Kevin, I just looked for your thread and didnt find it - odd, because I follow you. What's the title please?

Thx anne g

[Kevin_1 in reply to raincitygirl]

Sorry to have created so much confusion by deleting that post.

I hope it's replacement is better.

[Kevin_1 in reply to raincitygirl]

Hi Anne

To post a link:

Highlight the link you want by holding down the left mouse button and dragging it across the link. Don't include anything but the link, not the spaces before and after it if there are any.

Now hold down the CTRL key and press the C key once. The link is now coied into the computers memory.

Put the cursor in the exact spot you want the link to appear and then hold down the CTRL key and press the V key once. That will paste it to where you want it.

I hope this helps.

[aliciamq]

Hi Joyce - I will click on the name of the person on an old posting. It will take me to the individuals profile page showing their activity list. There you can see if they are active or not and get updated posts of their situation and decide to post with a question or comment. You can send a private message and you can start a new post for the topic you are interested in as new folks and new ideas come on all the time.