Progression

[horseandwolf]

It is 2:00 am and I am sitting here wide awake . My sleep cycle is all messed up, some nights I don't sleep at all but most nights I can get sleep around 4:00 am. I am a 71 year old male diagnosed with PSP last October. It all started January 2022 when I started having balance problems and difficulty walking and tremors in my hands. My neurologist had his suspicions as to what my problem was but he sent me to another neurologist who specializes in ataxia problems, so October I was officially diagnosed with PSP. I am taking carbidopa/levodopa which helps with the tremors, and I take muscle relaxant for pain and cramps in my legs. I go to physical therapy once a week for balance and strength which helps some but I fatigue quickly so I can't do much around the house and I sit in the car while my wife does shopping. Navigating with a walker around tables in a restaurant or aisles in a store is a real challenge. I know each patient with PSP is unique, but I was wondering if any one started with similar symptoms: fatigue, sleep disturbance, loss of strength, balance and what comes next?

[LuisRodicioRodicio]

Hi horseandwolf!

Most people only take medication for symptom control.

• Control of palliative medication against depression, as well insomnia and anxiety. In our case, one pill of Sertraline-50 at breakfast (depression) and one pill of “Lorazepan-1mg” (insomnia and anxiety), one hour before dinner (*). Of course all these drugs were prescribed by a physician. After around 6,5 years with this medication no appreciable side effects on our case.

(*) I have read that to improve the patient's sleep are using "Melatonin" successfully. Others use “Trazadone”. Ask physician.

Pills can be taken in a spoon of applesauce or similar...this helps it slide down. Also a good pill crusher helps.

A light dinner helps to control insomnia. Also a moderate walk (with aids) or wheelchair before dinner helps to generate a natural fatigue that helps fall asleep.

Some include a dose of 3 to 6 mg of CBD Oil (20/1-CBD/THC) via subling, usually before dinner, to stimulate appetite, reduce anxiety and as a co-adjuvant analgesic in neuropathic pain.

In periods of patient more intense anxiety some increase the frequency of the dose by applying it before lunch and before dinner on the same day. If you are interested see:

healthunlocked.com/psp/post...

Kevin_1:

healthunlocked.com/psp/post...

Article in Karger Medical (Neurological Improvement with Medical Cannabis in a Progressive Supranuclear Palsy Patient: Severe impairment of motor and language functions_A Case Report) :

karger.com/Article/FullText...

I just send to you an information by internal chat.

Hug and luck.

Luis

[easterncedar]

Hi, horseandwolf. Insomnia is a real problem with PSP, and so is the fatigue from physical exertion. I sympathize. I wonder if you are doing anything between your weekly PT visits? We had good results from the exercise program called LSVT Big, which was designed for Parkinson’s. It really helped, for a while, with balance and walking. It was intensive, and we had to travel to get to the facility that offered it, but it was worth it. The best thing for us was the exercises you had to do at home every day. We did them together, and it was even fun. The routine helps maintain general muscle tone and physical comfort, which might help with sleeping. There are some videos online about it, but if you can find an in-person program, that is the best.

You ask what comes next, and I wish I had a good answer. With PSP you’re always fighting the progression and chasing symptoms. This site has some great information in the archives of former discussions.

Wishing you the best, ec

[pmcdonough1]

Donepizil was prescribed by my husbands doctor it helps with mental cognition. First it was 10 mg then later increased to 20 mg. When he was up to 20 mg it provided enough relief he was able to sleep without Trazadone. Best Wishes

[Bergenser]

My husband was diagnosed with PSP June 2021, after he started slurring his speech and losing his balance. In hindsight, my husband was experiencing fatigue and insomnia long before the more obvious symptoms started.As you, he has benefitted from dopamine (co-careldopa) for the tremors but this doesn't help for sleeping. He now has a slow release version of Cinemet at bedtime just so he can get out of bed during the night and in the morning, and the stronger dose is just during the day. As the effect of co-careldopa seemed lower after a year, he has now also got Amantadine which improves movement and can boost energy. Again this is not helpful for sleeping and he has his last dose at lunchtime.

For sleep - it seems inevitable that PSP causes sleep issues. We've made sure other factors (such as needing to get up to the toilet multiple times a night) have been looked into properly. Things that help for us is

- a bath before bedtime

- a quite fan by the bed (white noise)

- a cooling blanket / cooling pillow when it's hot

- making sure the covers are light and that his legs don't get stuck when turning over.

It's impossible to say what comes next - sometimes it can be sudden (my husband broke his heel bone after impulsively climbing a ladder) and sometimes it changes gradually (the occasional coughing while drinking). Physio and vocal exercise will always be helpful.

Doing things that make you happy seems the most important treatment.

I wish you all the best in coping with PSP.