I was diagnosed with having a parkinsonism in December 2024 after experiencing a few problems and my wife noticing my restricted mobility.
I was given hope when they told me exercise will help
I seem to be taking more and more medication with slight improvement and then I develop another symptom. The latest is balance problems and feeling dizzy.i have no energy, my BP is low, i now have another tablet
Im curious to know what would happen if I stopped all medication. MM
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Hi Nelly1, thank you for your post and weāre sorry to hear about the bad experience youāve been having. Weād recommend speaking to your GP or Parkinsonās nurse before making any big decision about changing or stopping your medication as they will be best placed to offer advice and explain to you what could happen.
Our free and confidential helpline is also available to anyone affected by Parkinsonās: 0808 800 0303. If you call us we can put you in touch with one of our Parkinsonās nurses who can answer any questions you may have.
Please know you are not alone in how you are feeling, and if you need support, we highly recommend reaching out for help and support. The Samaritans are available 24/7 on 116 123.
Parkinsonās UK Moderation Team 
Hello Nelly1
I was diagnosed over 15 years ago and it may surprise you to know that from time to time wonder that myself and I donāt suppose I am alone in that When you need medication every single day and it always seems to be added to with no-one taking any particular note of whether all you take is still needed, the right dose and so on.
If you are tempted to try it however, I would strongly suggest you donāt do anything until you have spoken to your consultant or Parkinsonās Nurse because going ācold turkeyā can be ādangerous.ā
I think it may be worth contacting your consultant anyway as it could be that your current regime needs a bit of tweaking.
I know it probably feels like a lifetime since your diagnosis but it really is not that long. The problem I think is that medication is mostly trial and error but you have to take the medication long enough to determine if it is right for you and if itās not you are left struggling and that in turn can cause you to lose faithā¦
Why not go back to your consultant or Parkinsonās Nurse and discuss your symptoms and medication more fully.
Exercise definitely helps not least because it can lift your mood but it can be hard to motivate yourself when you are feeling a bit low and lost when nothing seems to be working as you had hoped. Unfortunately there are no quick fixes for anything Parkinsonās related and it means being prepared for the long game.
Keep plugging away, go back to your medical team with any concerns, speak to the Parkinsonās UK helpline and come back to the forum whenever you need and hopefully you will reach a calmer more peaceful stage before too long.
Good luck and best wishes.
Tot
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Good morning Nelly ā¦ I am a 71 year old single gent living alone. I was originally diagnosed with Atypical Parkinsonās in June 2023, following what my first NHS neurologist said was a positive for Parkinsonās datscan. Like you I was told I have parkinsonism rather than the normal delightful variety. I had been having symptoms for maybe 5 years.
The symptoms I had were gait freezing, balance problems & some shaking when
I eat or carry anything. Also symptoms got worse if I stand still for more than a minute.
This first neurologist told me that Atypical Parkinsonās is difficult to treat, did I want to bother taking the medication? I did try two drugs which did not work, one was Madopar, I forget the other. Then he left the NHS & I was given Cocareldopa aka Sinemet by my Parkinsonās nurse. This did work but had side effects like Insomnia and nightmares that caused fatigue.
About 3 to 4 months ago I paid to see a neurologist privately through my Benenden health policy [Ā£15.85p a month]. I had a very thorough physical examination by him [same as all the neurological examinations I have had]. He told me that my only Parkinsonās signs were in the lower half of my body and they were āmildā.
He watched me tie my shoe laces which I did perfectly.
My worst symptoms, the āgait freezingā and possibly my ābalanceā he thought was not Parkinsonās but something else.
He then looked at my ādatscanā & thought it was ānormalā. He then sent it away for a top expert second opinion & this came back āborderline Parkinsonāsā.
So he suggested I come off all my Parkinsonās medication. As Tot mentioned my medication was halved for a week & then I was off it completely. This experiment lasted 2 to 3 months.
My one activity, which is my life, is Indoor Bowls. I play for 2 hours between 2 & 5 times a week. During the time I was off the Parkinsonās medication there were 3 times where
I went to bowls but could not play because my balance was too bad. This compares to being able to play every day when on the Parkinsonās medication.
When bowling if my balance is bad I fall over, not ideal is it.
So the compromise that works for me is that I have gone from 2 Sinemet pills 3 times
a day to 1 pill twice a day if I am not bowling & 2 pills twice a day if I am bowling. So no evening pills. Since starting this new pill regime I am sleeping much better and have not missed a days bowling and am playing really well.
I do have other conditions ā¦ Mild neuropathy, Atrial Fibrillation, Arthritis & 3 areas of damage to my spine & high blood pressure.
I have just had a brain Mri scan as my left leg has been numb for a while and mini strokes need to be ruled out. Also this might lead to a re-diagnosis of
Vascular Parkinsonās.
If I were you I would ask for a second NHS neurologist opinion, or go privately if
you can afford it [Ā£250 approx].
As Tot says do not go cold turkey without talking to your medical team.
It may be that like me you have multiple conditions not just Parkinsonās. You donāt say how old you are.
I was also referred by my GP to the local hospital for a 6 x 1 hour neurological course in the hospital gym. Before taking the course they gave me an assessment where
I scored 32/50. So 18 basic physical things that I could not do, like standing up from
a chair without using my hands or standing on one leg.
Best of luck, any questions do ask.
Steve2
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I believe the PD meds can lower your BP in some patients. Monitor your BP sitting and standing . Discuss the BP results with your PD nurse or gp i suspect your BP is causing the dizziness and balance issues due to the meds .
Thanks for response , sorry for rant, bad day!!
I need to be more patient
Iām 60 years if age who up until 12 months ago was very fit and active and no medication
My wife (who has been amazing) made enquiries about going private a few months ago. The earliest appointment is September
Appreciate messages. Will be more positive
Thank you for sharing your experience, Nelly1. Dealing with new symptoms and changes in medication can be really tough, and itās understandable to feel concerned about what would happen if you stopped all treatments.
If youāre thinking about stopping medication, itās important to speak with your Parkinsonās specialist or nurse first. Stopping suddenly can make symptoms worse or lead to serious side effects, especially if blood pressure is already low. They can work with you to find the best approach, whether thatās adjusting doses, managing side effects, or exploring other ways to help your wellbeing.
Youāre not alone, lots of people find the constant changes with parkinsonism challenging. Please reach out if youād like more support or want to talk through your options.