Notes on Dad

[Dadshelper]

I've been keeping notes on dad, CBD, for just over 4 yrs, ever since he moved in with me. I started taking them so I'd remember things to bring up at doctor visits because at times the appts were months apart. Even now after being in a nursing home I still jot down things I think are of importance.

The problem now is.. what do I do with them? They are a good record of his personal progression and possibly a decent baseline for others. I've asked his neurologist if he'd like a copy but he didn't express much interest.

Any ideas?

Ron

[raincitygirl]

Hi Ron, if it were me I would keep the notes in a file until at least until after my dad‘s passing. You never know whether they would be relevant for some future possible research project. If nothing comes of it following his passing, I would then destroy them.

XX

Anne G.

[LostinHeadSpace]

There's a web site somewhere where carers post the disease progression timeline that I came across during the awful week when we first heard the diagnosis. Even posting there would be helpful. Of course I can't think of it now.

[Beads0122 in reply to LostinHeadSpace]

I too stumbled on to this site that has stories of PSP/CBD. They are in more of a narrative format than a timeline. Here is a link. psp.org/ineedsupport/person...

There is a link to add your story. I found this helpful in understanding what we were facing. I however did not take the time to document my wife’s decline and believe it would be too painful to do so now.

Thanks for caring enough for others to have documented the disease progression.

Bobby

[honjen43]

I have the same dilemma. I still have the notes I made while my husband was ill. Think raincitygirl has the answer! But not sure when I will part with them!!

Hugs

Jen xxx

[Ettavb]

Citizen Science has improved a lot of disciplines (birding community comes to mind), and there are a variety of non-profit self-reporting websites to support various interests - maybe that should be something for any of the organizations set up for PSP/CBD should look into, and the if developed, doctors/families could be directed to such a location — that is, if something hasn’t already been established.

[Pooches]

I also makes notes on my FIL as his symptoms change sometimes daily although there are constants. I started because I felt for him it helped his peace of mind to be able to get out how he was feeling inside. Now it helps me to remember what happens when. As you say the gaps between visits to the neurology are currently charted for every three months. It also helps me to see some of the more permanent changes that he mentions on a regular basis. I think the notes are really useful and have real purpose. There will be someone conducting a study that would benefit from such insite.

[Keiko278]

Hi - as a librarian, I would say keep them. Do you mind me asking a few questions about your dad prior to being diagnosed? I am doing research myself and my goal is to help stop this cruel, heart breaking disease. I am going back to school to do research on it. Please, let me know. Thank you! My dad is not doing well and it breaks my hear that at this point nothing can be done. I am trying to start IV therapy for him, but he is in Brazil and things are not that good over there.