My dad has been diagnosed with PD for 6 years now. He takes Sinemet 5 times a day.
I have a question and would appreciate your feedback. I understand that as medication wears off - it causes the symptoms to come back until you take the next does. But how long should you realistically expect the medication to work for, at each dose? its just that Dad literally changes from one moment to the next, for instance I walk with him, and for a few minutes he is ok(ish) then suddenly he starts walking really really fast, extremely stooped and looks like he is going to topple forward.
I asked Dad if this happens in any kind of pattern, i.e a certain amount of time after/before medication, if he eats certain foods etc. he says there is no pattern at all and that the medication doesn't give him any particular amount of time here he feels any better/more stable.
For your information - He has a very very bad tremor (it started with a tremor in his finger), and has very sore groin, even clothes hurt, His stooping is very bad. His mind is absolutely fine - no deterioration with that at all, but his body is failing him.
He complains of a feeling of nerves which starts in his tummy (i Think he means internal termor) which precedes this need to work really really fast and stoop forward, this is made worse by hunger!
Dad just had an appointment - we did tell them this - but the only feedback is that is how parkinsons is, and they increased his to dose from 4 to 5 sinemet per day. To be honest we are not finding the checks ups very helpful at all. We have enquired about different medications but have been informed they are all the same in terms of results, we have also asked about DBS but have been told it carries great risks such as stroke!
I wanted to see how it is for others on this board
We changed neuros and got one who knows his stuff after the first one wrecked our lives with DAs!
He spent ages getting the doses and timing right and telling us all the other paths we could go if the Sinemet regime lost its power to control symptoms.
He said it was up to us to decide when we wanted to explore other treatment options.
We are 15 years into the PD journey and touch wood the 2 hourly Sinemet and dispersible Madopar is keeping my husband going...
I would not accept a neuro who was so dismissive of your Dad's problems or so reluctant to help.
Have you a Parkinsons Nurse who can advise?
Our first neuro never told us there was one in 10 years!
No the hospital Dad is assigned to doesn't have Parkinson nurses.
I think you are right about demanding better care, im going to look in to getting a second opinion. Does anyone know of a good Parkinsons Specialist in Surrey/South London?
sinemet last for 4hrs in system takes about half an hour to work so if you took one at 8 am be on at half eight start wearing off for 12 so take another at 12 so it will lap over some people this is not enough like me so I take 125 mg 8am then another 62.5mg 10am then 125mg 12pm so on.so I don't have any off time and stay on with out any dyskinsia hopes this helps
