Help Dosing Sinemet Plus DESPERATE - Parkinson's Movement

Parkinson's Movement
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Help Dosing Sinemet Plus DESPERATE

heidle
heidle

My 96 yr old mum is undermedicated. She has been "weak" for the last year at least. Everyone wants to accept it as old age. My mum has always been STRONG. She missed a neurologist appointment about 8 months ago because she was too weak to go. Finally saw him in September. He increased her Sinemet to one and a half tablets every 5 hours. This is still far too little. She is getting through more than every 3 hours. If left to 3 hours she has just started going into a very dark place.. literally like she's going to lose consciousness. Her meds literally disappear. A carer witnessed this and wanted to call the paramedics. It happened 2 days running at the same time. Exactly at 3 hours. Since then I've barely slept with anxiety. It's been a week of trying to get neurologist or Parkinson's nurse to help. I have not got anywhere. The Parkinson's nurse refuses to increase her meds as she had the increase in September and she won't go against the neurologist. she is fearful because of mums age and the side effects. The neurologist says I have to deal with the Parkinson's nurse. I have been adjusting mum's medication daily and can literally barely think now. I have sat all day taking notes and observing and I now know for a fact she has been undermedicated for a long time and if she has one and a half pills in her she can feel really happy and has energy which means she can eat properly and feels happy and can chat with people and have visitors etc. If I put her on one Sinemet every 3 hours she is down and weak and never really gets to a good place ...this is already more than prescribed. She takes 250 controlled-release at night. The Parkinson's helpline suggested she may need a controlled release in the background all day to prevent her going into that black hole. I did try 125CR during the day alongside her Sinemet and it did stop it but of course it ran out after around 5 hours i think and I have everyone telling me I must not give it to her and go beyond the neurologists recommendations. Can anyone help me ? I am beside myself. Neurologist appointment on January 8th. He is a cold arrogant man and I'm not even sure he will help !!

5 Replies
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Heidle

You are making a fantastic effort to

Help your mum. For what it is worth, my advice after 5 years diagnosed is:

1. Look after yourself, find a way to calm down. You can’t effectively help your mum otherwise.

2. Start looking for a new neurologist and nurse who you can talk to and trust.

3. Experiment with exactly the doses you think your mum needs and record everything. You can then take a plan of action to the new neurologist.

4. If you need prescriptions that you don’t have, take your primary physician into your confidence. He/she may be prepared to help.

Best wishes.

heidle
heidle
in reply to Joynb

Thank you Joy. I would love to find a new neurologist. I'm not sure how easy that is. I am just now connecting to a local support group but they don't meet until January sadly. I have a GP coming today but I can almost guarantee they will say they can't do anything because it's up to the neurologist.

I have experimented with dose and I think I know what she needs but EVERYONE tells me it's too much too quickly because of her age. But what else is there?? She is getting more confused and can't remember what I've said and I'm horrified by that but at the same time at least she is happy when she is medicated. The suffering I have seen over the last week when her meds run out is beyond words.

I appreciate your reply. I'm trying really hard to calm down but it constantly feels like I'm in fight or flight because of what I see. I just need someone professional to help me.

Parkinsons' nurse just called to confirm that she won't increase meds and is recording it as an "incident". That they have advised me not to increase meds. Unbelievable.

Joynb
Joynb
in reply to heidle

I take a different view of your mums age. She has lived her life, it is now reasonable to take risks and go for a good outcome. You are not obliged to ‘Obey’ any doctor, or even to keep the upcoming appointment.

At some point, you must turn your head

If you are not happy with your care you can talk to the hospital PALS department. You might also want to contact Parkinson’s UK on 0808 800 0303.

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