Spasms / mini seizures

[MissTR]

Hi everyone,

My mum is in the later stages of PSP, not able to walk, speech is minimal and her liquid intake is all by PEG and some solid food. A few weeks ago, she was taken to hospital with mini seizures, and she spent a couple of nights there. They put her on some new medication Keppra, which seemed to work. But in the last 2 weeks she has lost a stone ( she was only 8 stone to start with,) and for the last 2 days she is now bed bound, sleeping all day, arm and leg spasms almost continually.

We are trying to decide if this downturn has been induced by the medication or if it is natural the progression of the illness.

We don’t know whether she is in the lasts stages of the illness, at the end preparing ourselves for her passing. Or whether we should question the new medication? As maybe it’s not quite her time.

Any thoughts? Or expériences with this drug?

Thank you from (an emotionally drained) Tracie

[Cazash]

Hi Tracie

Sorry to hear of such a downturn. Sadly can’t say about the meds as my dad in law didn’t have them prescribed but he started getting really bad spasms mainly to just hands and legs just a couple of weeks before he passed away so I suspect but can only say from our own experiences that it’s a symptom that can be associated with a decline in the PSP journey.

His progression was extremely quick with only several months from obvious symptoms to his passing so I can’t even guess st your own timeline as we all know everyone is Different

To help him with these spasms we found very gentle massage and sometimes just simply placing a hand on his arm or leg was enough for the spasm to ease but it did often take a couple of minutes to have an effect. Something to do with the brain/nerve imbalance simply sensing the touch to the skin and eventually getting the message back to them brain to ease the muscles.

We noticed particularly difficult when he was in the between state of neither awake or asleep properly seemed to be the worst

Good luck and sorry I can’t help more but hope my observations from dads journey will be of some help to you

Take care stay safe

Caz x

[MissTR in reply to Cazash]

Thank you Caz. This is really helpful to know you had similar experiences. It’s been a relatively long journey for us, my mum has defied the odds at many a point. Maybe that’s why we can’t quite believe this is really the end drawing near.

Thank you for sharing your thoughts,

Tracie

[SewBears in reply to MissTR]

This is a nightmare disease. My husband has also defied the odds so when a previous symptom that was once put to bed comes back, it's rather flabbergasting. At dinner tonight I was cutting up his food and hubby's whole body shook. He made the table move. We both laughed about it because I happened to mention how tough dinner was and I told him that he didn't have to make fun of my cutting techniques. For some reason we both got the giggles and we didn't think anymore about it. I'm sure the shaking episode was a seizure and I often wonder, what's next. We never do know, do we? Heartbreaking!

💔 SewBears