Crushing Stalevo - any experiences or suggested alternatives?

Hello all,

I'm new to the forum, but have read many of the posts in the hope of finding out more information on the problems we are encountering with my mother's challenges.

I apologise in advance for the long waffle - but I hope that someone reading may be familiar with the problems, and could maybe have a suggestion as to whether we could be doing things another way, or whether this just really is end stage and that we should stop focussing on improvements and just ensure comfort.

My mother has Parkinson's, now with early Lewy Body Dementia - PD diagnosed 7 years ago, LBD added in 1 year ago after permanent changes in cognitive & executive function abilities after 2 unexplained falls.

She has been taking Stalevo 7 times a day, which has suited her well and maintained an adequate level of mobility & general functions.

Unfortunately another fall led to hospitalisation, which has started a marked downward spiral in her abilities. Exelon patches ran out, so oral version substituted. This caused vomiting - and thus lack of regular meds getting into her system, plus lack of food and fluids. Then two 8 hour periods "nil by mouth" in order to be gastroscoped to ensure that there wasn't an ulcer/more suspicious cause of vomiting and evidence of GI bleed. Return to Exelon patches and vomiting stopped. Gastroscope never happened, but obviously lack of meds/food/fluids again. Then "hospital acquired pneumonia" started. Delirium, treated with broad spec antibiotic to address the infection. Poor meds, food, fluids. After 2 lots of antibiotic treatment over 3 weeks, infection seemed to have subsided. However, new problems in the form of swallowing difficulties, rigid jaw (and body), no self-started movements, doubly incontinent and fluctuating lucidity. Tube fed for 5 days as it was the only way to ensure getting anything into her.

We have managed to transfer Mum to a nursing home as she no longer had any "medical treatment" needs to warrant staying further in the hospital. The staff are working hard at giving her medications absolutely on time with her previous schedule, and encouraging her to eat when they can get her to swallow. She is kept clean, turned frequently, the staff are very calm, kind and cheerful, and genuinely seem to care about her wellbeing - all I could hope for.

Crushing the Stalevo and adding liquid is the only way to administer it - by teaspoon taking about 20 minutes each time - but she seems to be having what I term "dopamine storms" - patches of deep calm sleep, then wakeful periods where she has the "death grip" hands, constant muscle contraction, higher body temperature, but can be quite lucid - appropriate 1 word answers to questions, or sometimes several words in response to a bit of news. I am reading this as problems with the delivery of the medication crushed as opposed to the old ways with the tablet slowly breaking down within the digestive system and being transported.

I would love a magic answer to all this, but I appreciate that is unrealistic. It is so frustrating to see this body working so badly, when despite the LBD it is obvious that there is still so much sharp brain activity going on.

If anyone has any thoughts on this I would be really grateful to hear them

That has been my problem for my mom since last year. Stalevo was the wonder drug for my mom. She took it with Mirapex and she functioned like a normal person for years until she started to have trouble swallowing that med due to it's size. I've contacted the manufacturer and they said unfortunately that is just how they make their drug and must be swallowed whole. My mom would chew it up once it went into her mouth or kept it in her mouth until she choked on the phlghem from the pill mixing in with her saliva. The orange color that stayed in her mouth would drive me to panic attacks. Because the drug wasn't swallowed whole she would absorb it way too fast and in turn she would crash and burn abruptly.

I tried using the ortho cup to have her swallow the pill but she wouldn't do it. She was the giant pill as an intruder to her mouth so she refused to swallow it whole. As a result she was switched to Sinemet and 8 months later I am still trying to perfect the dosage with Mirapex to get her back the way she was and she's not. She has stopped talking now and has incontinence daily because she won't let me know when she needs to go to the toilet. When she sits anywhere for more than 5 minutes her eyes are kept closed until I pry them open for her long enough to get her up and into bed. She's pretty much asleep for 18 hours a day.

Why would the makers of Stalevo invent this miracle drug in the size they come in for people who can't swallow? My mom was taking the 150 and 200mg dosages and they are horse pills. I wish you luck. We are still experimenting and it isn't pretty.

Brickwall,

I'm a little late, but .... what Ed/yekkimo said, I would definitely check with the pharmacist. Some meds can be crushed or split ... and some can't. Crushing or splitting can affect the delivery of the medication. Your pharmacist can find out for you.

lizzy4451