Seizures

[jmorrish]

Hi everyone, my Dad is in the later stages of PSP, his speech has pretty much gone apart from the very occasional word, he’s now in a wheelchair and is incontinent. He has stated having what I can only describe as seizures. His hands start shaking and he goes rigid. It only lasts for about a minute but I’ve noticed him doing it a few times now. Has anyone else experienced this with PSP sufferers? TIA xx

[Bergenser]

Sorry to hear that your Dad is experiencing such distressing symptoms. If you open your post and scroll down to the bottom of the page (or search the PSPA posts with keyword "Seizures") there are many previous posts. It seams some PSP warriors have actual seizures (epileptic type), some have severe cramps that makes the body rigid and causes shaking, some have dystonia, some have myoclonic jerks, and there are different treatments for all of these, so I believe you need the doctor's advice. With the difficulty of speaking it could be difficult to get an answer from your dad but you can ask if he is having cramps and what level of pain he feels. Some treatments could have severe side effects, so do read the previous posts and be prepared to question what gets prescribed. The previous posts suggests palliative care team might have the best treatment options.

I wish you the best, I know how it feels when your loved one is in distress and you cannot make it go away 🫂

[jmorrish in reply to Bergenser]

Thank you, I will get in touch with his Parkinson's Nurse as she meets with his Consultant so they may bring his appointment forward.

[LFG3]

Hello,

I'm so sorry your Dad and family are going through this.

My dear husband passed away last Aug from PSP. He would often have seizures when I stood him up for a transfer and especially if he was standing while laughing. A word of caution...the neurologist sent us for an EEG on his brain and since they didn't record the typical brain wave activity of an epileptic seizures, he refused to call them "seizures". He called them a vasovagic response, which can mimic a "true" seizure. If I were you I would refuse that testing. Who cares the scientific definition of a true seizure. When you see a seizure, it's a seizure!!! My husband's would last approx 40 seconds. His eyes would roll up to the ceiling, his body would completely stiffen (called tonic seizure), his back would arch, and sometimes his stiff arms would raise in front of him. He was completely unresponsive at this time. And one incidence of fecal incontinence during an episode, so be ready for that unpleasant event. After about 40 seconds his body would soften and tremble all over for about 5-10 seconds. Then I could get him seated. It took every ounce of my strength to prevent him from falling during these seizures. The only way to get around them for us was make the transfers SUPER fast. Like in 3 seconds. Up, turn, sit.

The less time standing, the less seizures. I'm a retired medical person, so after some extensive reading I found that a vasovagal reaction where the blood pressure temporarily drops from standing triggers a part of the brain communication network. ( Sorry I don't remember the actual term for this part of the brain) But basically it is a gateway switch in the brain to channel signals, anyways it gets overloaded by the drop in blood pressure and triggers these "vasovagal seizure-like episodes". So yes a seizure-like episode, NOT a true Epileptic seizure. But to me, a seizure is a seizure and NOT worth dragging him to another appointment to differentiate them. Nothing could be done for them per our neurologist, unless we wanted to go to a Cardiologist for a full cardiology workup. We declined. I know this is long, but I hope it helps you. So yes, seizures do occur in PSP. Not very common but I read a few others had similar incidents like us.

[jmorrish in reply to LFG3]

Thank you for your reply, it’s hard to find information on these episodes when looking into PSP symptoms. What I’ve witnessed so far Dad has had them whilst he’s been sat down. I am reluctant to have him poked and prodded any more than is absolutely necessary, he’s really had enough of it all.

[sammy90210]

Sorry to hear about your dad

Please check with his neurologist for Sinemet (Carpidopa Levadopa) - it sometimes helps the patients with their speech and swallowing and general body muscle stiffness

Best wishes

[jmorrish in reply to sammy90210]

He’s already on that medication, has been since he got diagnosed. I do think that they have helped with his speech and swallowing.

[sammy90210 in reply to jmorrish]

I also discovered that passing lukewarm water on my dad's hands would instinctively make him open them up - best wishes

[LuisRodicioRodicio]

We combat stiffness in hands, arms and legs with gentle and persistent massages. We have read that the drug "Baclofen" can help in some cases. Ask Physician.

Isotonic drinks are interesting to help maintain blood electrolytes at the correct level. Lack of the proper level of electrolytes in the blood can cause spasms.

Sandir-2021 proposes: “To soak the hands in epsome salts and soap daily. To use a very thin cotton sack cloth to clean b/t the fingers and use a large qtip to clean inside the palm. After soaking I rinse then dry them really well using the dry end of the cloth.It is very important to dry really well.you can use a hair dryer if they can not be dried well with a cloth. To keep the fingernails clipped and filed very short to prevent them from digging in to her palms.”

Racewalk 2021 proposes: “Forcing fingers partly open, at shower passing my finger wet/soap inside the hand. Washing with shower wather, passing inside the hand some skin protective cream, drying with paper tissue and with hairdryier”

Martina_MP-2021 suggest: “Perhaps some hand sanitizers are just thin alcohol and an occasional little splash could get in there and also would evaporate”.

Fist opening maneuver:

youtube.com/watch?v=a2MnoaC...(Not working as expected?)

In the minute 15:00 until 15:40 of the video you can see how the maneuver to open a fist is performed.

The maneuver must be done carefully as it can be painful.

Sammy 90210 Indicates that “lukewarm (not hot) water over his hands helped him relax.”

Daddyt give us his experience: “I have occasionally experienced a clenched fist as recently as last week. To remedy this, I first hold my hand on warm running water. As I do this, I gently pry each finger, while stretching and gently massaging it away from the palm of my hand. I only experience pain and discomfort while I do this. But because I work my hand almost immediately after the clenching, I think I minimize any further pain. Be sure to keep her fingernails short and trimmed to avoid breaking the skin. If it becomes a regular issue, you might consider a splint. Some caregivers have used a rolled washcloth or even a tennis ball or similar item. Botox may work, but as you know, it might not be beneficial”.