Hi, my mum was diagnosed 18 months ago and so far her only symptom is a hand tremor- although it does drive her mad!
I am looking for advice on medication- so far we have tried 4 different medication and they have all made her so ill- she dropped so much weight on sinimet and felt so sick and the sickness and nausea has continued with every change in medication. Latest medication was ropinorole and made her hallucinate.
I would just like to know if anyone else has had these issues. The medication seems very trial and error and it is just awful seeing her so unwell- the medication seems to be worse than her Parkinson’s and I don’t know what to do as consultant just keeps saying we need to try different meds which I am finding increasingly frustrating.
Thanks fir listening
Good morning M247 … I am 70 & was diagnosed with Atypical Parkinson’s just over a year ago following a positive Datscan. Atypical Parkinson’s does not respond well to medication. I was on Madopar for a week then Ropinirole for 10 days. I am now on Sinemet & have been for some time. I find this Parkinson’s drug helps & there are no unpleasant side effects for me. I am on quite a lot of medication for other health issues. I take Ramipril for high blood pressure, Bisoprolol & Apixaban for Atrial Fibrillation, Amitriptyline for Neuropathy & Quetiapine to combat nightmares & sleep issues caused by the medication I take.
I’m afraid the only option for Parkinson’s sufferers like us is Parkinson’s medication & yes it is a trial & error process to find out which one helps.
Taking no Parkinson’s medication is of course an option & she needs to speak to her health care professionals about that. Does she take her Parkinson’s medication with food ?
Is your Mother on any other medication for other health issues?
Any questions please ask.
Why not phone the Parkinson’s UK helpline here & speak to a qualified Parkinson’s nurse 0808 800 0303 … They usually get back to you within 24 hours.
Best wishes
Steve2
Thanks for the info, I will definitely call the help line.
Mum is on a couple of other meds for angina and low blood pressure but the consultant didn’t raise this as an issue mixing with Parkinson’s meds. I will also check if it is atypical Parkinson’s.
Hello M247
It’s never easy to see someone you care about struggling as your mother is with her Parkinson’s medication. The medication is actually very good and makes a big difference to many people for a long time. The problem with it, as your mother has discovered, is finding the right medication, dose, timing and sometimes even brand. It is something of a lottery or indeed, trial and error.
I see you have already had a couple of replies with some useful information however perhaps you could explain a little more about your mother’s tremor - my thinking was along the same lines as a comment made by Steve2 - and that is, does she really need any medication at the moment?
I don’t say this to imply your mother’s consultant is wrong, and maybe she would be best just persevering with medication until something is found that she can tolerate and which makes a difference. However as a general rule of thumb medication is usually prescribed at the point the symptoms start to have an impact on one’s quality of life. You say the only symptom your mother has at the moment is a hand tremor which, to quote you, drives her mad. The question is really how much is it impacting on her life. Can she still do what she wants/needs to do even with the hand tremor? Does managing the hand tremor cause her to get quite down about it or is it more that it is something a bit frustrating, an inconvenience rather than a major problem If it is something that is in effect a bit of a pain in the neck, rather than an actual problem, it may be that she can do without medication for the time being. I think you also need to be clear about the extent that the tremor is a real problem for your mother; as I said it can be hard to watch someone apparently struggle but this happens a lot in Parkinson’s, it may look awkward, they may be slow but are still perfectly able to manage. If this is the case it may well be worth discussing this with your mother’s consultant. There will in all honesty come a time when the medication issue will need to be addressed, but maybe that time isn’t now and further down the line who knows what will be different and she will perhaps manage medication better then than she is now.
Tremor is not an easy symptom to live with but there are things that may help manage it. These may help.
Assistive devices can help people with Parkinson’s disease (PD) and hand tremors in many areas of life, including eating, grooming, and mobility:
Eating
Weighted utensils with larger handles, like those from KEatlery and Good Grips, can be easier to grip. The Liftware utensil has a sensor in the handle that can reduce shaking by up to 70%. Rocking knives can also make cutting food easier. Other options include plates with scooped edges to prevent spills and travel cups with lids and straws.
Grooming
Electric toothbrushes, razors, and hands-free dryers can help with hygiene care for people with tremors and grip issues.
Mobility
Tools like rollator walkers and canes can help with safety, balance, and mobility. Bedroom aids like bed rails, adjustable beds, and floor-to-ceiling grab bars can help prevent falls and make it easier to get in and out of bed.
Other
Other assistive devices include:
Automatic jar openers
Cut resistant gloves
Magnetic fasteners
Shoehorn
Personal medical alert systems
I’m not suggesting you shouldn’t listen to what her consultant says and his reasoning which may be perfectly valid. I am after all making comment on limited information and I don’t know your mother and I am in no position to judge its impact on her life. I simply put it forward as an option since she is within her rights not to take medication at this time when the tremor is perhaps not causing her any major problem and come back to it at a later date. I would be interested to know what decision she eventually makes.
Tot
Thank you for such an in depth answer.
Mum is on no medication at the moment after the awful ropinorole experience and we haven’t been able to get another appointment with consultant to discuss next steps. She is so much better in herself for not taking the meds so it will be a question of whether she can cope with the tremor for now - it doesn’t really stop her doing anything but it is constant hence why it annoys her!