Adventures in neverland

[Uscarol]

My husband is in a longitudinal study for PSP and we had our annual review..both patient and caregiver. My husband who is 3 yrs into the study, had two session of two hours (2days)with a psychologist. At the end she comes out looking alarmed and says, your husband is very depressed. Seriously? I wanted to say No s*** Sherlock. But didn't as I respected her process. But really? How could he not be. He's saddled with a terrible terminal disease that has no treatment, just modalities to alleviate symptoms. He's losing the ability to talk, walk and see well. He knows hes losing cognitive functions. We have him on "happy pills" to ease the anxiety. I just wonder how stupid they think we are....soooo sorry..HAD TO VENT..thanks for listening

[Dadshelper]

Sometimes those in charge are oblivious to the obvious....

Ron

[raincitygirl]

When it’s not them experiencing it, they have no clue.... we expect professionals to be all knowing: they sure are not!

I love your response, Watson! 😆

Anne G

[Hidden]

I think they feel like they have to say something. They know they are useless. Doctors don’t handle that well.

[Hidden]

This is safe place to vent... you are surrounded by understanding friends. Sending you & hubby hugs.. Granni B

[racinlady]

Boy do I get your frustration! The only way you can possibly understand these illnesses is to live them. It's why these sites are so valuable to those of us who are or have lived them. And, I think it's why we stay around after to try to help in any little way we can. We just kind of muddled along dealing with whatever came up at the time. Thank God for hospice! Pat

[SusieTess in reply to racinlady]

Pat....please keep posting....your comments and experiences that you lived through before us are so helpful to us as we continue on this horrible journey...

Thank you, Thank you ❣️

[Tippyleaf]

The naivety sometimes is incredible!! Love the Sherlock expression - so apt!!!

This is the place to vent - where we all get the frustration, sadness and exhaustion, sadly as others have said you have to live it to get it!

Love

Tippy

[Sunsetboulevard]

Vent away love ... it’s especially frustrating that someone supposedly “in the know “ would say something so ridiculous to you .

[doglington]

When you are in a depressing situation it would be more surprising if you were not depressed !!

Not helpful. Jean xxxx

[ncgardener799]

I refer back to thoughts I shared on another post, "its not their reality". Those who know the struggles of this awful disease are well aware of the effects it has on patient, caregiver , friends and family. We are living it very day-I am grateful for this site and the people here who support each other no matter what situations we are dealing with.

Warm hugs to all-Pat K

[SusieTess]

Hi....nothing you say shocks me, I feel very dismayed by the lack of knowledge the so called professionals know about this devastating disease...most of them treating my husband in rehab have never heard of it....we, the caretakers know more than they do and end up telling them what needs to be done and how to do it....you would think that in seeing the diagnosis, they would at least do some research by just simply googling it....it’s appalling.....please feel free to vent to me anytime...it helps to know we aren’t alone....

Take care and sending hugs....Kathy

[Nanny857]

I agree with what has already been posted, only those who are or have lived with this hideous disease know the truth. I feel for your frustration, but you know you can vent here as much as you like, that's the beauty of this forum.

Sending a big hug ( ) Nanny857xx

[daddyt]

No Shit is right. You don't need a doctorate degree to figure it out. Like Ron said... oblivious to the obvious. If the "good" doctor had an MD. to go along with that Master's degree, he would obviously know that the basal ganglia is affected by those terrible tau protein tangles. But, he doesn't, so how would he know the ol' BG is the emotions command center... guess he could have Googled it. Done... for now.

Tim

[Red1990]

Side note...thank you and big hug to him for your time and efforts in participating in a study. It takes a lot of effort and wherewithal to stay compliant and engaged for length that you have. Appreciated.

[Javan]

Educated idiots get their diagnosis out with such style.

[Baytalon]

My husband broke 6 ribs in the span of 8 days requiring 3 trips to the hospital ER. On the first trip the ER doctor had familiarized himself with my husband's chart, knew he had PSP, and treated the pain with a nerve block followed by prescription ibuprofen. He had some pain but was comfortable. After the second fall and the 3 additional broken ribs, we saw a different ER doctor who obviously didn't know Steve's condition or anything about PSP. When I asked about the nerve block, she said, "Uh....I don't do that." Instead she gave him a shot of morphine that turned him into a zombie for over a week. In fact, 3 days later, I had to call a squad because his breathing became shallow, he had not eaten or drank anything for 72 hours and was non-responsive. Surprise...we get the morphine doctor who says, "I guess he doesn't handle morphine well." Well to still your quote....NO SHIT SHERLOCK. She did a "there, there, dearie" hand pat and gave him an IV although she said he wasn't that dehydrated. No...they don't know and I will never allow anyone to treat him for anything until they convince me they know what his condition is and how it effect treatment.

[Javan in reply to Baytalon]

The old bag was given morphine once while I was absent and she slept for almost a week. I have ensured that is not to be used on her medical records. Any drug that crosses the brain barrier can have a serious effect on these illnesses. When in hospital I question everything and tell them to get to her level whilst speaking as she hears all, but some form of response may still come.

[RunPeace]

Thank you for sharing your experience. We have not had any serious falls so far but it is good to know and be prepared.

Hope Steve is feeling better,

Ana

[Baytalon in reply to RunPeace]

He is making progress. I guess that's all I can ask for.

[Bipa]

I feel your frustration!! There is no one out there that knows the frustrations we experience! Not only the physical part of the disease but the mental as well. My husband now has dementia - wondering around the house at night, hallucinating and most upsetting is, me waking up, smelling something frying and discovering he has two frying pans with butter melting on high (ready to fry fish that he was hallucinating about). Today I am so upset and cannot stop crying. I need a week or two respite and it is almost impossible to get. Sorry to bring this on to you as you have your own concerns. Just had to vent 😢.

[Uscarol in reply to Bipa]

My family doc who is also a very long time friend. 40+ years has prescribed an anxiety med for me that can be used only as needed so you don't need to wean off and doesn't make you feel weird. Just started it and it just made me feel better and took away feelings of overwhelming sadness and angst. So I can persist. Care for the caregiver

[JubileeRanch]

I know what you mean!!!

I don’t do the Dr appointments any more unless he has a fever or bad cold etc...non of which he has had!

Making an appointment, sitting in a waiting room and finally seeing a Dr to just say “ how is he doing?” Then basically “good luck”!!!

NO THANKS, done with that....