Dad recently diagnosed

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Dad recently diagnosed

Postby sharbear36 » Wed May 05, 2010 11:15 pm

My dad was diagnosed awhile ago with PD and it was much too progressive. When the neuro was giving him the test they get each time and my dad couldn't follow the finger, I could see the concern come over his face. He recommended a Parkinsons specialist. So last week Thursday my dads new neuro said that he has PSP. When I left his office, I knew that this was bad. I knew that the hope was gone for him getting better. I knew that this was going to be a long and ugly road. The story is so long as to what we've been going through but where he is at now is: walking is bad, he has taken a few tumbles, his thought process is poor, he is incontinent both ways. The new neuro upped his carbo levo/dopa (sp). He was taking a very low dose to begin with and now he is taking a full pill 3x/day, next week 2 pills 3x/day, then to 3. He said that this is going to either help or hurt but it's our only option. Actually the other day he left a message on my phone and it was my dads old voice. That is gone now. I don't know what to think of that, even my step mom said that he was better that next day with more of the medication. I'm blabbing, sorry.

I would like to know if there are support groups in the Milwaukee, Wi area. Nobody knows what I'm going through except people experiencing it and I think I finally come to realize that I can't do it alone. I have friends that I talk to but they can nod their heads all day long, they have no idea. My dad who was so strong, physical and the center of our family, is someone that is so frail and helpless now. It happened so damn fast.

Thanks for listening but Im just lost :cry:

Shari
sharbear36
 
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Location: Milwaukee, Wi

Postby Robin » Thu May 06, 2010 12:07 am

Hi Shari,

Sorry to hear about your dad.

If your dad has the dementia form of PSP (which sounds rather likely), then the levodopa/carbidopa will have no positive benefit. I do wonder if the bowel incontinence is being caused by the levodopa...?

There are no support groups in WI. There are two people listed as "Communicators." You can find their contact info within a Word document on psp.org.

Robin

PS. You are actually posting in a "Patients Only" area. You might consider re-posting to the General Discussion area. More people may see it there.
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Postby sharbear36 » Thu May 06, 2010 9:00 am

Thank you! :D

I just saw the PSP and neglected to look any further. I will repost there, thanks again.

Shari
sharbear36
 
Posts: 4
Joined: Wed May 05, 2010 11:02 pm
Location: Milwaukee, Wi

Postby abbuttercup55 » Sat Aug 07, 2010 8:25 pm

i'm very sorry to hear about your dad, my mom was also just recently diagnosed and is incontinent both ways. she's tried different parkison's meds that did not help, and is still in depends, so i'm not sure if that's part of the disease or not. i too am at a loss, i don't know what to do anymore. all i know is that i want my mom to live, and if i have to take care of her that is fine with me. my dad and i can do that, we have no problem with it, i don't want her gone from us. it's so hard to see someone that was once so strong and strong-willed and so active in the community be reduced to someone who can barely talk, can't walk without assistance, and everything else. i do know how you're feeling honey, and would love to talk. i feel like i have no one to talk to because no one understands. i do have friend that lost his grandfather to psp, but he doesn't tell me the things i neccesarily am ready or want to hear. maybe he's not ready to be supportive, although he is trying, who knows, i just feel lost. what do you do to try to make your father feel better and keep his spirits up?
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Postby sharbear36 » Sat Aug 07, 2010 10:53 pm

Hi,

Thanks for the reply. There isn't much to do at this point, he doesn't usually respond. Sticking your tongue out at him will sometimes get him to smile, so I will do that. Monday he has to go into a hospice center because my step mom is having surgery and there is no one else to take care of him. He is in hospice but in-home. That was an awful step. He seems to be declining so rapidly. He is breathing heavier, in bed alot, barely able to hold his neck up, and his voice has lowered. It just sucks. All of it.
sharbear36
 
Posts: 4
Joined: Wed May 05, 2010 11:02 pm
Location: Milwaukee, Wi

Postby Robin » Sun Aug 08, 2010 2:50 am

Shari,
Sorry to read of your dad's decline. It's good there's an in-patient hospice facility nearby. How long will your father be there?
Robin
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