I was diagnosed with Parkinson’s in 2016. Symptoms were a tremor in my right arm and dragging my right leg (and a loss of sense of smell which, as a preschool teacher had put down to 20 years of changing nappies!!!)
6 years on after lots of tweaking of medication, I find myself feeling worse than ever and wondering what I’m feeling is due to actual Parkinson’s, the medics I’m on or even just getting older (I’m 58).
I’m interested in what would happen if I did a compete ‘reset’ and came off the medication (gradually) to see how my symptoms had progressed and then perhaps looked at adopting a really healthy lifestyle, alternative treatments and then gradually reintroducing medication if needed?
What you’ve been experiencing with your medication is very common among people with Parkinson’s which I’m sure doesn’t help you, but there is support available to you to help manage your symptoms. I would strongly encourage you to speak to your GP or Parkinson’s nurse about your medication before making any changes to them as your attempt to ‘reset’ it may cause you more harm than good.
As well as visiting our website; you can speak to an adviser via our helpline service, they’d be more than happy to provide you with more information and support on this situation. Do give us a call on 0808 800 0303.
Hello Lolypoly
There are times when I feel as you do, certainly I wonder what exactly I would be like if on no medication. In my dreams of course, I discover I am better without the drugs but I know the reality is different.
One of the difficulties is as you say, knowing exactly how much the Parkinson’s has progressed or exactly what you could do without the meds or different meds if you’ve been on the same prescription for a while. For me though, I know in my heart of hearts I need the meds. I don’t think there is any harm however in speaking with your medical team and get their view since you said you are feeling worse… There’s nothing to stop you adopting a healthy lifestyle or finding out about complementary therapies etc anyway; that in itself may help you feel better.
I would be interested to know what you decide to do, if anything - a reset is certainly an appealing idea but I personally wouldn’t try it without speaking to my consultant.
Tot
I understand what you are saying. I am only 3 weeks in to my diagnosis, although I think I was displaying symptoms for about 2 years. After on 3 weeks on meds I am finding that I need more and more just to reduce the shaking. Like someone else has suggested, I know in my heart of hearts that I need this medication.
It sounds like a great idea to do a “reset” to see where you are at, but I wouldn’t do it without speaking to the doctor first. Good luck and let us know how you go on. x
