Hello. I am sharing our story in the hope that there may be other people who have been or are in a similar situation. in 2012 and aged 60, my father suffered a fairly large stroke in 2012 caused by a dissection in his right carotid artery. Unfortunately this left him with left sided paralysis and his carotid artery is still occluded with the blood clot that caused his stroke. With therapy he was able to walk unaided for about 3 yards, which was a significant improvement. Around 2015, we noticed a slight tremor in his right hand (his unaffected side) which led the doctors to say that it was old age (he was 63 at the time) we noticed that the tremor was getting slightly worse and he was unable to walk without holding onto someone and froze when he entered a room. The doctor referred us to a Parkinsons consultant who said that it was probably Parkinson’s and prescribed Sinemet. Since starting Sinemet from around 2016 we have not seen any affect at all, the dose has just been increased every time we see a consultant but still no affect and dad’s symptoms are gradually getting worse and he is becoming increasingly lethargic and unable to do anything. Has anyone else been in a similar situation and can advise? Are there any other medications dad can try other than Sinemet? Look forward to hearing. Thank you
A warm welcome to the forum.
We have a really supportive community here so I’m sure it won’t be long until receive some helpful comments from your fellow members. Parkinson’s medication works differently for different people and finding the best drug, dose and timing may take some time and will need some changes along the way.
If Sinemet doesn’t seem to be working for your father, I would advise that you go back to his doctor again and explore other options. It might also be useful to speak to his Parkinson’s nurse as he/she has the authority to prescribe medication too. We have more information on drug treatments on our website here - https://www.parkinsons.org.uk/information-and-support/drug-treatments
We also have a free helpline which you can contact and speak to one of our friendly advisers about this. They’ll be able to offer more insight and support on this as well as put you in contact with a Parkinson’s nurse. Feel free to call them on 0808 800 0303 from Monday-Friday: 9am-7pm, Saturday: 10am-2pm, or you can email [email protected]
I hope this helps.
Reah - Forum Community Manager
There are lots of other treatments you can try. I was originally put on Madopar which we. found wasn’t stomg enough for me so my consultant changed me over to stalevo which works much better. Talk to your Parkinson’s nurse about other treatments for your father. All the best
Thank you for taking the time to reply. We went to see my dad’s Parkinson’s nurse this week and she mentioned a patch and Stalevo however she cannot prescribe any medications which I found odd as I thought Parkinson’s nurses can prescribe so has told us to book an appointment with a consultant. We have seen three consultants since and they have all just increased the Sinemet (he is currently on 5 a day) which dad has never responded to. I am in the process of trying to find another consultant. Can I ask if you take Sinemt with Stalevo or in replace of Sinemet? Thank you again.
Thank you for your reply and information, Reah. We saw my father’s Parkinson’s nurse this week and she mentioned other medications however, she was unable to prescribe and suggested we see a consultant.
Happy to be part of the forum and reading other people’s posts, finding them very useful.
You’re welcome. As far as I’m aware, Parkinson’s nurses have the authority to prescribe medication to their patients, so you may need to contact our helpline for more clarification on this. One of our advisers can arrange for our on duty Parkinson’s nurse to give you a call about this.
Feel free to give us a call on 0808 800 0303 when you can.
I was told by my Parkinson’s nurse that she can’t prescribe herself but that she can recommend to my GP what she thinks should be prescribed and that most GPs are happy to follow her advice.
I not sure if the nurse can change the medication you are on but she can change the dosage. Perhaps the consultant feel that sinemet if best You can talk to either nurse or consultant about other options and treatments.Don’t find another consultant Just let them know that the tablets you are taking just aren’t working. They need to understand from your point of view or take Reahs good advise and call their helpline
T I have never taken sinemet myself it was the Madopar which I found not! Strong enough. It might work differently for you