So tired!

[Sglisson]

So my father in-law has PSP and is about 4 or 5 years into it. He is so impatient and while I was in the laundry room he tried to get up on his own and he fell, hit his back on the fireplace and has been in terrible pain that or he is exaggerating I really don't know. We called an ambulance they did a CT scan said he was fine sent him home with pain meds he screamed all night then we called them to get him again next day he went to hospital same results. My sister in-law picked him up and took him to her house so we could get a nights rest. We have had him for 4 months and he wakes us up 6 to 7 times a night wanting to know what time it is, asking us to turn off a light that isn't on and now this latest making loud groans and calling us to tell us he is in pain. Any suggestions on getting him to sleep through the night and not wanting to get up so many times?

[rriddle]

Medication? Can you talk to the neurologist as this is a rather bad situation.

[Bargiepat]

He might benefit from Alexa....... " Alexa what time is it ? "

She also turns my light on and off when I need the bathroom.

He would need to remember her name though.

[raincitygirl in reply to Bargiepat]

Brilliant Patrick..!

[Bargiepat in reply to Bargiepat]

The first time I used mine at night I used the word Alex and nothing happened ........I said it about 5 times before I realized what was wrong !

[raincitygirl]

I'm afraid its got to be medication..it isnt their fault, its the disease, but behavioural therapy isnt going to work, so..something that keeps him under for the night...(would probably help his pain too!) Ive seen a lot of prev posts with drug suggestions...

[honjen43]

Poor you! And poor dad-in-law! Sounds like nerves on edge that are not being treated. No doubt due to PSP, but happens in CRPS (chronic regional pain syndrome) too. Generally GPs don't seem to have a satisfactory answer other than basic painkillers. Hope a talk to neurologist will help both pain and sleep!

Hugs

Jen xxx

[LuisRodicioRodicio]

Hi Sglisson,

My wife has been suffering from PSP for 6 years.

Impatience and trying to maneuver on their own and without help is a constant risk.

Until she need to continuously use a wheelchair we have suffered several falls, some with important consequences (hip break).

Insomnia is a constant also.

The treatment that we have followed is as follows:

Control of palliative medication against depression and insomnia. In our case right now: 1/2 Sertraline-50 at breakfast; 1/2 Sertraline-50 at lunch time; 1 Lorazepan-1mg one hour before dinner. Of course all these drugs were prescribed by a physician.

Recently she pays close attention, after dinner, to a light TV show. Surprisingly this activity has significantly improved her relaxation and rest at night.

She has had some episodes of constipation that have been corrected by applying an intensive Mediterranean diet based on fruits and vegetables, abundant liquids and helped by the drug "Duphalac" (an oral osmotic laxative).

Drops of artificial tears to the eyes or physiological serum upon request (more often as the disease progresses). If you have problems applying the drops "Optrex spray" is an alternative.

Various medications have been tried for pain episodes (falls). There have been some side effects such as confusion and daze, especially with opiaceous. Currently when an episode of pain arises we use progressively: Paracetamol, Nolotil (magnesic metamizol) in capsules and if the pain is acute Nolotil in glass ampoules orally. All these treatments under medical supervision.

I hope and I wish these notes are useful.

Hugs.

Luis

[Baytalon in reply to LuisRodicioRodicio]

Thank you for this list as we are entering the zone of a thing out dreams. Last night my husband woke up, sat up and removed the pillow case and top sheet because "you said you were going to wash it." Of course, I had been sleeping until he sat up.

[Cuttercat]

Have the Doctor give him Trazadone for sleep. He will!

Cuttercat

[Robmatlol]

Unfortunately this is all a trait of psp. It’s not his fault. I’m sure he’d rather have a peaceful nites sleep. Yes, as Cuttercat said, Trazadone does help with sleep as it’s an anti anxiety drug. But be prepared for many a restless nite. In the end we had to get nite carers in to sit with mum and reassure her when she woke as even the strongest of sleeping tablets didn’t help 😕