PSP Association

Decline, flu, recovery, decline?

Dans PSP seemed to be causing a rapid decline the past several weeks. He would stop mid way when eating, leaving food in his hand near his mouth, but not biting it. He is getting harder and harder to move, and rarely says a word.

Last week when we went to his nearologist, he slept in the wheel chair the entire visit. He did the same the next day and did not eat much. He has had a cough at night for a while,. The night time cough did get worse, but that too was attributed to PSP.

Friday morning he had a very slight fever, up one degree. I worried about aspiration pneumonia . Once we got to the ER he actually said about 3 words and smiled. He rarely smiles anymore . He was diagnosed with influenza A, which is an epidemic in the US. The gave him an intravenous bag of fluids, tamiflu and sent us home. He seemed to understand what was wrong, looked right at me and was bright eyes and aware. He answered a simple question with yes or no. He was aware that he was feeling miserable due to a bad flu and he would soon recover. His cognitive state was So much better.

Sunday the hospital called and prescribed antibiotics for a urinary tract infection. He is now back to total lack of communication. He usually can not even make a decision when I tell him to squeeze my hand for yes. I am almost wondering if some of this is due to depression. When he was at the hospital and he thought they could help him, he seemed happier. When we has home and realized he was ill and would get better, he smiled, looked at us when we spoke, and said a few words. He seemed like he was with us.

Or is there a clinical reason why a virus, or anti viral med would cause an immune response or lowering of inflammation in the brain. Believe me the change only lasted about 2-3 days, but it was obvious. He is back to a blank stare.

He has heard us talking about needing help and the disease progression. Perhaps thus has him in a state of depression and hopelessness. Has anyone had any luck with antidepressants.?

Thanks, any thoughts are appreciated.

Karyn

16 Replies
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Hi there! Sorry to hear of your ups and downs. My dad started on antidepressants about 8 months ago, wasn't diagnosed with PSP until last month. At the time he was put on them he was still able to communicate well and was a little more mobile. The biggest benefits that we saw was he no longer made suicidal comments and he slept through the night. The good night sleep was two fold; he got better rest so he was more alert during the day and he is not up in the middle of the night trying to get out of bed without assistance and falling. Since the PSP has progressed, he is not as alert as he used to be during the day but at least he is not getting up in the middle of the night and falling. Might be worth a conversation with the doctor. As hard as PSP is on the carer, I can only imagine how hard it is for the sufferer. We also try to keep dad's mind occupied with things he used to enjoy. He used to be a truck driver, that was his passion in life. We always ask him what is the best way to get from here to there. Even if we already know the answer, and we can barely understand what he is saying, it gives him a little boost that we still rely on him for something. That piece that is still there and hasn't been taken by PSP, hanging on to happy memories is good medicine too.

Peace to you,

Tante

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Thanks So much. Dan loved to ride his motorcycles and also knew how to get everywhere. Even when he seems unable to think or communicate, he can often remember how to get somewhere,. Sounds like your family is taking great care of your dad. Would you mind telling we which antidepressant he is on.

Thanks , and best of luck.

Karyn

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Tante,

Do you know what antidepressant your dad is on? Ruth is on sertraline which helps her mood but she has real problems sleeping. Thanks

Richard

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He is also on sertraline and the other one is called Risperdal.

Tante

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Dad also has sleep apnea and uses a by-pap machine. You can tell a big difference in him if he does not use the machine. He has a really bad day if he has a bad night.

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Tante,

Thanks so much. I will look Risperdal up. You are doing a great job with your dad.

Richard

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Richard33, I told you wrong. My dad is on Remeron not Risperdal. Sorry about that.

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Tante,

Thanks so much for finding that out. As it happens Ruth was put on this drug just last week and it seems to be working.

Richard

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The rollercoaster is common as is the gradual slope downwards. Antidepressants did help my dad (PSP confirmed through brain donation).

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Thanks So much. Can you tell me which drug your dad took.

Karyn

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My dad was first on amitriptyline because we thought that tri-cyclics would be good for PSP. It was good for a couple of years but then the constipation started worsening. We switched to citalopram after a bowel impaction. I'd probably stick to the SSRIs to avoid the constipation side effects.

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Hi Karyn; My hubby is a CBD sufferer, but yes - antidepressants are helping him. His mood lifted, he is still frustrated and greatly disappointed, but not depressed (I ask him, on a regular basis.) He is verbally non-communicative, but I can still tell.

Good luck and hugs,

Anne G.

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Thanks. The loss of the ability to communicate is awful. The couple days when Dan could answer, even just yes and no, were great.

Can you please tell me which antidepressant he is on.

Thanks

Karyn

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Hi Karyn, Sorry I missed your question earlier: Hubby is on Sertraline which is Zoloft in the US....

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My husband has been on the antidepressant Lexapro (escatilopram) for several years. He has had no ill effects from it. It helps him sleep and presumably lifts his mood - though with psp no-one ever really seems cheerful!

He has also taken a downward turn lately. Rarely speaking, unable to walk unaided, even with a walker. Transferring from wheelchair to anywhere becoming more difficult etc.

The biggest help has been the medical marijuana, but we are taking a few weeks in Florida where it is not legal, so it may be the lack of it that has set him back.

Good luck with your Dan.

Finoni

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Thanks so much. We have thought about trying marijuana . Unfortunately , it is not legal in Wisconsin . Did it help with communication / speech etc.

thanks

Karyn

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