Looking for Psp Pts and caregivers in Tampa Flrodia

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Looking for Psp Pts and caregivers in Tampa Flrodia

Postby chellecola » Mon Jun 22, 2009 5:30 pm

Hi

Hi.....my name is Michelle and have been on here before. Dad is now being treated by the university and tampa general for PSP with dementia.

I am their daughter...Dad is 73 an mom 72. I am an only child and live very close....Dad does therapy at my house 3 times a week and on the other days I am usually fixing something that he broke from falling( like in stalling and re-installing the commode he broke twice hahahahaha) or trying to referee. I have spents LOADS of money on every gadget I could find to make thing easier for me...I'm told by family and friends I am awesome and so kind. when I am tired like I am now I cope well in front of them...but when I get home I fall apart for about an hour...then I get rest...and wake up better in the morning

I am disabled and 45 from a car accident that has left me crippled for the rest of my life...Rsd....Nerve and bone missing fibromyalgia....muscle spasms....so I am dealing with my own pain in silence myself.

I' soooooo glad they are here...sick or not.....b ut do you think that anyone here knows a person and caregiver in the tampa FL area that I could get in contact with and possibly talk to and maybe meet with eventually so mom and Dad could see that others are having the same struggle/

I don't know....if you can read between the lines....but it is hard to write thru tears...and I feel silly cuz I know it has happened to one or more of you and you (me) always feel better AFTER a little rest.

I have talked to my dad about brain donation though and it was easier than I though.

If anyone can help....I could use your stories of the low times as a life line right now!!!!

If not...thanks for listening and I will feel silly once I go get some rest and reread this....hahahahaha.
thanks my friends
Michelle
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Location: Florida

Postby Robin » Mon Jun 22, 2009 6:22 pm

Michelle,

Good for you for talking to your dad about brain donation. What did he say?

Did you check psp.org for any support groups in Tampa or "communicators"?

I know a woman who may be in Tampa and runs a dementia support group; I will try to find that info for you.

Robin
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Postby chellecola » Tue Jun 23, 2009 1:06 am

Well...I approached it as away to update things for him and myself both since he does want to be an organ donor and he just strted PT and they mentioned filling out papers for that type of thing. I told him that even though I know his intentions that if we don't get it taken care of now...it would be a problem later legally....and that it sure would be nice to help someone else someday when he is gone, not to suffer as he has been doing. Now I just have to order the packet I guess and go from there.

Problem is....EVERYDAy I am becoming more and more overhwelmed with little things that I have put myself on Auto pilot to do...but then every other day there is a mishap...or an accident or something that then forces me to be calm cool and collected until I get home and collapse...and try and deal with my own pain.mentally and from my car accident 10 years ago)
don't get me wrong...I am not a blubbering idiot but I do have my moments that no one sees....especially when my mom feels the need to tattle on my Dad for this or that....or CONSTANTLy is telling him he sits wrong and gets up wrong and walks wrong and gets into bed wrong and moveswrong and shuts the door wrong etc etc etc.
I know it sounds like she is mean...BUT....she actually is trying to almost carry him thru this disease by telling him how to help himself when to him he feels like he can't even sneeze without some comment. She waits on him hand and foot but it is VERY VERY hard for her to cope.....and she won't EVEN think about talking to a DR. about herself....or GOING with us to Dads visits.
They are both a lovely couple......I just feel this overwhelming cloud of darkenss in their relationship because they are still greiving what they thought the "GOLDEN YEARS" would be.
Most times for me....I just get caught in that when I am so tired that I am gonna collape.....but after a couple hours rest and a shower....I always have a new attitude.
I just thought that maybe for me.....AND them...individually if someone else could speak to them about the daily struggles that they both would feel more understood....and for me....it would just be cathartic.
don't ask me when I would have time....hahaha...but I would find it if Isomeone was able and willing.
Also...I would have to introduce the people to them gentaly and maybe one at a time so they both would feel free to vent if needed.
thanks again for listening...at this time of the morning when there is no one to talk to and it is so quiet....that is when I need to talk.....and here you guys are!!!!!
chellecola
 
Posts: 18
Joined: Wed Jan 02, 2008 2:47 pm
Location: Florida

Postby Robin » Tue Jun 23, 2009 6:54 am

Michelle,

I emailed you back in April I think it was about those two options in Tampa for brain donation. One was free and required your dad to participate in a research study. The other was not-free but presumably CurePSP would reimburse your family for most of the costs. Let me know. This is something I can easily help you with as I've made brain donation arrangements through both routes in Tampa before.

It's wise that you see your parents are grieving. It's hard to help others with their grief and depression. You need to do what you can to lesson the impact of their grief and depression on you! I hope you are seeing a counselor or speaking with someone about the stressful situation you are in.

I checked the PSP support group list and there's only one group now in FL -- Naples. The Communicators list is a bust for Tampa as well. So to find other PSPers in FL I suggest you do a search here of posts mentioning either Tampa or St. Pete. I only came up with one person who mentioned Tampa in a post and that was from 2005: hlnpok69.

Also, I realized that the Univ of South FL in Tampa is now an NIH PSP study site. Is your dad seen at that university? Perhaps he might be pleased to participate in that study. Hopefully they'll be enrolling patients in a few months' time. I wonder if you could contact the RN or social worker for the neurologist seeing PSP patients there and ask if there's a family in particular that your parents might enjoy meeting.

You might like to know about this resource in the Tampa area:
http://dcrinc.org/
Karen Karle runs support groups around the Tampa/St. Pete area for those dealing with dementia. Her booklet for dementia caregivers is wonderful.

Did your family attend the Tampa PSP conference held last year? Was there anyone at the conference they enjoyed meeting?

Good luck,
Robin
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