My mother has Parkinsons has had very bad dysphasia so they lowered her sinemet .
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My mother took 2 sinemet tablets 5 times a day. And a patch once a day for rotigule. She went into a nursing home in March and they accessed her dysphasia as being a hazard and so her sinemet was lowered to 1 1/2 tablets 5 times a day . She now has severe off patches with panic attacks stomach pain leg spasms etc... Has anyone else had experience of these symptoms .
0 likes, 5 replies
Wheelz sally_14743
Posted
I'm wondering if your mother has her wits about her, or perhaps suffers from dementia?
i realise I'm going to ask more questions than answers, sorry, but it may help clarify the situation a bit?
possibly?
another question: who is she a hazard to?
herself?
other patients?
the staff?
As regards stomach pain, I have recently started to get pain, not exactly in my stomach, but the muscles each side of my stomach go into spasm and cause a real raw burning sensation, sometimes striking so suddenly that I can cry out in pain.
i take a similar dose of Sinemet and will talk about it with my dr and PD nurse next week
sally_14743 Wheelz
Posted
my mums Parkinsons nurse increased her patches to stop the off periods when sinemet is due being so severe. She had agonising stomach spasms and panic attacks about an hour before her next sinemet was due . Giving her the patches totally took this away most of the day and reduced it to 10 minutes at lunch time dose.
but she started to get dysplasia first her arm kept raising up and down all day long then her tongue kept sticking out and moving from side to side continually now my mother also swayed from side to side then her left leg also started to go up in the air continually. It was very tiring to watch . But my mother who was still able to make decisions although suffering memory loss very early parkinsons dementia didn't mind it as she felt great. It caused her to burn calories as you can imagine like being on a tread mill all day and she went from 12 stone to 6 stone in 3 years ... She ate really well had suplimates drinks with high calories in. But the dysphasia was causing weight loss.
I am detailing this as it may help you make decisions. It's the old quality verses quantity. My mum wanted quality and knew losing weight would hasten her death.
Unfortunately when you go into a nursing home they view quantity as a priority . My mum was really swaying and moving ridiculously she found it hard to put food in her mouth as her head was moving one way her arm another. The care home were told by the parkinsons nurse that she was at risk of falling . So they lowered her meds as I mentioned in my post. She did stop moving so much. She still occasionally raised her arm or her tongue would waggle but it worked. The down side her off periods increased . Unfortunately 12 weeks after going into the nursing home she was sitting watching TV with her friends in the communal room and she stood up to go to the toilet lost her balance even though she was leaning on a pusher and fell.
being well under 6 stone by now she broke the neck of her femur was too frail to be operated on and died 2 weeks later.
So lowering the meds didn't prevent a fall. But she enjoyed her life doing crosswords , chatting to people ,crocheting up to the end . Yes the high dose of meds did shorten her life as they caused the rapid weight loss . But her quality of life was good up until they lowered the tablets about 6 weeks before she died.
The fall killed her. But she died able to walk, talk, feed herself and use the loo unaided. She needed help getting in and out of bed and dressing and washing and showering.
Not bad. The parkinsons dementia was beginning to take hold and she could tell but it was gradual.
Hope this helps you make choices with your meds...
Sally
sally_14743
Posted
sorry it's so sad . But in some ways her life was so good ...
Wheelz sally_14743
Posted
Thank you for that. It must have been hard to write, but it has really helped me. I too, feel that quality is the most important thing, for me anyway,. It may not be so for others.
it has certainly made me feel that a decision I have made, to refuse the offer of having a pump fitted, is the correct one for me.
it sounds as if you and your mother were United in your fight against this horrible disease but also knew when the time for grace to replace the fight.
thank you again for writing about this.
W.
sally_14743 Wheelz
Posted
Hi
only just read your last reply this week didn't realise I had to log in to see replies thought they would come up as an email.. oh well.
i do hope your decision was right for you and you are continuing to live with Parkinson's . Yours Sally