Not responding to Madapor

About Parkinson's and health Treatments and therapies
1

Has anyone had any experience of treatment not working at all.

Dad was diagnosed in May, after a series of very bad falls. Balance and speech have been affected. He was a very active farmer and since taking the medication he has had a rapid decline. Started off at 62.5mg of Madapor in June, then 125mg in Sept, now 250mg start of March. He has actually got worse. Cannot stand on his own any more, my mum is wheeling him on his mobility walker. Just for context, he was walking unaided lifting buckets of water last Easter after several very bad falls resulting in multiple fractures. Are we missing something? He is been treated by a consultant who specialising in older patients, not a neurologist. I feel like we are letting him down.
Depression is quite bad but this could be due to the fact he spends most of his time in a chair - coming from a man who was never inside. If anyone can help with any insight please do. Hes 72 tomorrow. Thanks x

2

I had a similarly rapid decline and was resistant to Madopar. I went from fit and active to needing assistance to walk within a few months. My Parkinsonism turned out to be caused by Spontaneous Intracranial Hypotension caused by a spinal CSF leak. Since treatment with two epidural blood patches I’m about 85% better. I lost my Postural Instability within 24 hours of the 1st patch, and my hand stiffness within days. I still have a tremor but it doesn’t bother me and is insignificant compared to what I’ve been through.

https://csfleak.uk/ has lots of info, but doesn’t really highlight the PD symptoms. Other CSF leak resources do.

For a simple test to try at home see the 48 hour flat test - csf leak 48 hour test - Google Suche

3

Best advice I can give is for you to contact your local Parkinsons Nurse(your GP Surgery should have a contact number for them). Tell them the problem & they will contact a proper consultant who will advise on which medication to try next. It is more trial & error to get the right medication, the common saying on here is that we’re all different & what medication suits one person does’t suit everyone. Personally I am on Madopar & don’t have any problem with it.

Les

4

Look into Normal Pressure Hydrocephalus. This could be the underlying issues for the falls. It can be misdiagnosed as parkinsons.

Normal Pressure Hydrocephalus Differential Diagnoses.

I would ask the consultant to at least rule this out with a scan and further investigation

1 Like
5

Thank you all for replying. I’ve looked at the possibility of Progressive supranuclear palsy (PSP).
He ticks every one of the symptoms.
The Parkinson’s nurse is lovely but it’s every 6 months before they review medication and he’s declining so rapidly. It’s heartbreaking. I will look into both things. Really appreciate you all for writing back. Xx

6

Also he was confirmed with having Parkinson’s by DAT scan. Does not really have tremor so they wanted to be sure. I’ve read though DAT scan can confirm lots of neurological diseases??