Carer experience

[Healey303]

Hi I am Warren from Melbourne Aust. My wife Pam is approaching the severe stages of PSP. Twice in the last 18 months she was woken me up in the early morning around 1am with a loud scream - immediately after she goes into a seizure shaking violently for a few minutes then slips into unconciousness for another 10 to 15 mins before slowly regaining conciousness. She does not recall any part of the incident. Transported to hospital by ambulance and all tests fail to show a reason. Specialists not sure if this is triggered by PSP.

Has anyone else experienced similar to this, by the PSP afflicted person you care for

Regards

Warren

[Sun-flowerwearer]

Hello

whole body tremors are definately something many PSP sufferers experience. My husband had them too and usually at nighttime. The first time it happens is very scarey. I have read posts on here when tremors lasted several days! My husband’s were usually over in about 5 minutes. The catatonic state again is a common symptom where they seem to be locked in and unaware of their surroundings and then come back ..lasting minutes to hours

As PSP is rare often doctors will try and see if it’s something specific causing it but I think it’s the brain unable to signal and function correctly as the disease kills it off !

It’s a horrible unpredictable roller coaster x

[Healey303 in reply to Sun-flowerwearer]

Thankyou for your valued respose

[PineEater]

Healey303Hi, Sorry to learn of your wife's deteriorating PSP condition. Seizures are not a major clinical problem in PSP. Did the specialists including the neurologist prescribe any medicines for that? What were these and did these prove effective to any extent? Best wishes to you and your wife.

[Healey303 in reply to PineEater]

No additional medication was suggested due to the infrequent happenings of these seizures but there may be a change if it happens again

[LuisRodicioRodicio]

Hi Healey303!

Tremors, muscle cramps, spasms and stiffness:

In our case we not detected major episodes of muscle cramps or spams.

A low level of calcium or the incorrect level of electrolytes in the blood can cause tremors and muscle cramps. In our case, to avoid these kind of problems, we take three additional measures in the diet:

1) In the daily diet we include in the breakfast a quantity of fresh cheese combining with a small quantity of citrus fruits (orange, lemon, strawberries, etc.) and in the meals some egg yolk or fatty fish. And just as important as the incorporation of these kind of foods, whenever the circumstances arise, we expose the patient to the sun discovering legs and arms. The idea is to favor the presence of Calcium in the diet as well as favor the generation of vitamin D.

2) Isotonic drinks are interesting to help maintain blood electrolytes at the correct level.

3) We base the meal programming on the Mediterranean diet, favoring the presence of fruit, vegetables and legumes without forgetting the presence of meat as a source of vitamin B12.

Hug and luck.

Luis

[Healey303 in reply to LuisRodicioRodicio]

Luis Thank you for your detailed response including the dietry combinations that you are using. All things are worth consideration and trial

[SurreyK]

Hello, my Dad (80) had his first experience of this in September - they were diagnosed as Myoclonic Jerks which we were told are caused by advanced degeneration of the surface of the brain in PSP leading to electrical irritability. They lasted for a day or so with no-one able to tell us what they were until a neurologist was brought in to see Dad who took one look at him and said Ah, those are Myoclonic Jerks. He was prescribed Clomazepam that stopped the “episode” in its tracks within 45 minutes. Dad was told he should take one daily but refused on coming home … until a couple of weeks ago, Mum woke up to Dad having another episode in the middle of the night. She made him take a Clomazepam and again, it worked within 45 minutes. We’ve stressed to Dad how important it is he takes them daily now so as to prevent these horrible episodes but we’ve seen a noticeable deterioration in him since he’s started taking them regularly. No “episodes” but he doesn’t seem as “bright”or “with it” as before and his walking ability has really got worse. I’m not sure if that’s the effects of the meds or if it’s to do with the damage caused to the surface of his brain. We are waiting for his next appointment with his consultant to come through to discuss his decline. Not sure if this helps in any way but hopefully it does xx

[daddyt]

Hi Warren - I wasn't aware that Pam had experienced this issue. I've had full body tremors a time or two. Although not too common, we can have a seizure. I experienced a significant seizure this time three years ago, which had me hospitalized for a week. The ER doctor did an MRI and thought I had had a mini stroke or TIA and moved me to another hospital that has a dedicated stroke ward. This was in the middle of the damndemic and it wasn't until late in the week when a neurologist looked at the scan. Conclusion... PSP. I'm pretty sure I mentioned this to the ER doctor and to the nursing staff on the stroke ward. I was met with hunh? look. I can well imagine how frightful this would have been for you. I pray that Pam doesn't have any more seizures.

Tim