Hi my husband has recently been confirmed he has PSP, for seven years we’ve been told he has Parkinson’s. Over the weekend he’s spent a lot of time sleeping, not had much appetite and little energy. I’m worried that he’s depressed or deteriorating, has anyone else experienced this ?
Thank you 🙏
My husband had PSP. When he was weak I would take his vitals, if his Blood Pressure was low and Oxygen low I would take him in for suspected dehydration. If his White cell count was over 10,000 we would look for an infection. Some times he had a Urinary tract infection. Many times he was just dehydrated and I was able to convince the Emergency Room Doctors to administer fluids. My husband was on Bupropion for depression and Donepezil for mental cognition which helped with swallowing. The NIH has a great article on PSP which states PSP patients benefit from up to 20 mg of Donepezil. If I were in your position I would definitely have a Doctor do an assessment. Sending my best.
Thank you so much for your information
Hello Sp/mom23 .... calling you from the UK
Welcome to this group, tho ......its not an easy trip to take. So sorry you are 'with us!'
.I am male now 81, diagnosis at 76, and have a neuro-physio. It may be too late for you guys, but Croatian Branko Lugovic emphasises exercises. 'HARD DAYS' is his book £12.70 from Amazon. Recommended
I have written a blurb, a bit similar, 6x A4 pages. Happy to send you, if u give me ur email address.
'Keep on truckin' ..... and my best wishes TIMbow
Hello and welcome to the Group of supportive and caring fellow carers and warriors.
Firstly I am sorry you’ve both received this news. I say both as i feel I am on this journey with my husband in every way. I am in the uK and my husband is 63 diagnosed this year. Symptom since 2020.
My husband sleeps excessively and has done for two or three years. He goes to bed at 6pm and wakes around 6am and has broken sleep during the night. Fatigue I understand is huge with PSP.
My husband has suffered with depression and anxiety for years and when first diagnosed in May was very upset but after a few months he is less depressed than he has ever been. I think apathy again is huge in PSP and it helps a little in a way to lessen the emotions and fear of the awful diagnosis. He is less bothered about things generally which is helpful in the circumstances. It’s hard not to feel very sad as a carer and sufferer.
As for meals my husband sometimes says no to food and I accept that and at other times he wants to eat even though we are on a puréed diet now due to swallowing difficulties. I weigh him and monitor his weight to give me a bit of a guide.
The disease is progressive so we have to accept that they will deteriorate. Sometimes it’s noticeable as a big change and sometimes just tiny things alter. As carers we become vigilant to the slightest changes. I keep a daily diary to help me keep track.
What you describe is what I have experienced with my husband. It’s a constant worry but also a new normal unfortunately.
I recommend contacting PSPA as they allocate a support person who you can ring and ask questions and they’ll offer advice and support. They also do monthly zoom meetings for carers and separate ones for your husband which are good for information and this group and a couple of Facebook groups. I find these really helpful.
Lots of love x
Hi, I think you are seeing what many PSP warriors experience...the physical effort required to manage mobility, more difficulty eating from a dexterity and swallow perspective, vision issues, cognitive processing difficulties, increasing apathy are all common, its hard work and will contribute to fatigue, and alongside this a devastating diagnosis which switching off from may help someone cope. I often wonder with my husband who refused to talk about it since diagnosed 2 yrs ago whether it's the symptoms affecting him making him tired or his way of coping/ switching off from thinking about it...i think we carers put our energies into finding solutions and helping because if we don't who will! but i cannot begin to understand what it must feel like- so I think whilst symptoms play a big part in fatigue i think it's likely a coping strategy too I've taken the approach of working with what he wants...to his timetable even though that might be hard, trying to organise some activity, outings, carer visits to give some kind of structure, and let him rest when he wants to, activity when he wants. Just a final thought I have found a day centre activity and some longer 5 hr carer visits help by giving the opportunity to be with others and different activity / conversation and this seems to motivate. Sending warm wishes x
My husband was diagnosed as Parkinson's patient in 2019. This March, it was confirmed as PSP. He sleeps a lot. And he feels tired often. Since his speech is now difficult to follow, he gets frustrated. He is only enthusiastic about his karaoke singing as he sounds audible while singing.
My husband (68, UK) was diagnosed with PSP in June 2021. Getting the diagnosis affected his mood; he would sometimes lie down and cry and be very upset about the things he was losing. Over time he has been prescribed Citalopram (a form of antidepressant) and this has taken away the extreme mood swings. He has also been prescribed Amantadine. We had to ask for this - it is meant to improve movement and we have additionally seen it increase energy levels significantly in the morning and early afternoon (he cannot take it later in the day since it could affect sleep).
It is worth asking for time with the specialist/consultant to make sure all the options for relieving symptoms are offered, should your husband want to explore it.
PSP is very frustrating and knowing that it will become progressively worse would affect the strongest of us. As others have said - look for small things to do that make the day better.
Fresh air, exercise, song & dance, "sitting yoga" - life is better when we try new things.
Wishing you all the best as members of this "club" none of us wanted to be part of.
Time I think is running out
It is that time.
Extreme changes in short time
