Hello All,
A bit of a long message but wanted to give the full picture… My father has Parkinson’s and was diagnosed a few years after suffering a stroke from a carotid artery dissection (as a result from heavy lifting). The stroke affected his left side / balance / left side vision but with regular therapy and hard work he made some recovery and got to the point where he was able to walk independently for very short distances within the house. We noticed a slight tremor in his unaffected right hand in 2015 and after seeing a number of consultants who said it wasn’t Parkinson’s (as he didn’t see a response from Sinemet) he was diagnosed a few years later. His symptoms have not really been managed with Sinemet which he now takes 7 times throughout the day. His consultant prescribed Amantatine for dyskinesia (which he only has mildly) and didn’t really take to so he was taken off that and told to stick with the Sinemet. When I asked about other drugs he said that as my father hadn’t reacted well to Amantadine he didn’t want to pursue any other drugs. I am constantly reading about other drugs that are prescribed to other Parkinsons patients that seem to manage their symptoms and from what I have read its about finding the right cocktail of medication to best manage symptoms. We have never been prescribed any other medication (other than Amantadine for 2 weeks), surely Sinemet is not a ‘one size fits all’ medication? And I am sure that there are other Parkinsons patients out there that may have had a stroke before being diagnosed with Parkinson’s. I am concerned that my fathers symptoms are getting worse and he has issues with balance, freezing and his tremor is getting worse. He cannot walk in the house unless he holds onto a family member and now has very limited mobility. I am fully aware that Parkinsons is a progressive disease but surely management with medication is key? I would really appreciate any advice. Thank you
Hi Bluesky7,
It’s difficult to give specific advice re. medication without knowing more about your father’s case history. The most important thing to do is to seek advice from a GP, Parkinson’s nurse or other healthcare professional.
In the meantime we’d recommend you reach out to our Helpline, as they’re able to offer professional advice on a wide range of issues affecting Parkinson’s patients and their families. You can reach them via email at [email protected], or call free on 0808 800 0303. Lines are open Monday to Friday from 9am to 7pm, and on Saturday from 10am-2pm.
Hope this helps.
Best wishes,
Owen,
Moderation Team
I am very new to the forum but your post attracted my attention because ‘managing symptoms with medication’ is a hot topic with me just now. I may not be able to give any useful advice but can I express an opinion? It’s not new to say that Parkinson’s drugs are imprecise, produce serious side effects and have a variable effect on different patients, They are better than nothing, but so inadequate over the long term. Ten years after diagnosis I am now, like your father, beginning to get mild dyskinesia; this will get worse as I increase my dose of levodopa to combat the wearing off symptoms i have started experiencing. After discussing the way forward with my consultant last week I realised that he had nothing to offer except ‘Look up what proportion of patients have dyskinesia after ten years. Most patients chose to put up with the dyskinesia in order to be able to move at all’. Not inspiring is it? So in my opinion we must look at every alternative means of managing our condition and expect little from the available drugs.
Hi Marymona,
Thank you for your reply. Our consultant tried my father on Amantadine, apparently it can have some affect on Dyskenesia but my father didn’t take to it and had to come off it after a couple of weeks. It might be worth bringing up with your consultant? My father was diagnosed about 4 years ago with Parkinson’s but it seems that because he had the previous stroke his consultant is pretty much saying that is an additional problem but I’m sure that there are other Parkinson’s patients that have had previous strokes. It still feels that very little is known about managing this disease.
Thanks for the tip on amantadine, will keep it in mind for when symptoms worsen as I’m managing for the time being and reluctant to start on anything new. Just wondering if your father’s consultant is a neurologist? Or is he the one who dealt with his stroke? The disease definitely needs attention from a neurologist as it is so complex, even the specialists often seem at a loss to know how best to help us.
No problem, its always good to share. My father’s consultant is neurologist specialising in Parkinson’s and it is the Parkinson’s that is affecting him although I wonder if we should also be seeing a stroke consultant too as his left side (stroke affected side) is the problem with his leg and foot both very heavy. I agree with you that specialists are often at a loss to help, his Parkinson’s consultant recently told us that their are ‘limited options’. He is only on Sinemet. I had hoped that he could offer trialing other Parkinson’s medications to help alleviate symptoms. I often read that other Parkinsons patients medications are tweaked to help.
It’s true that Parkinson’s patients generally have an individual set of medications - if you have joined a local support group ask around and you will scarcely find two patients taking the same combination of meds. In my case I started off with Azilect (rasagiline), then Requip (ropinirole) was added then about 5 years ago I started taking Stalevo (levodopa), so I now have all these working for me (or against me, as eventually happens). Yet my husband has been prescribed, like your father, only Sinemet which he feels has given no noticeable benefit. When I queried this his consultant said it was better to ‘start with something simple’ implying that there would be more choice available in due course, but I suspect that unless we demand with a louder voice we will not be offered much else. To be fair to our Neurologists, they don’t have a great hand to play when it comes to meds do they? This is why I search for other ideas to improve quality of life. I hope that your father (and my husband) may find something to look forward to and put smiles on their faces independent of the consultants.