Newly diagnosed

Dad newly diagnosed they have said parkinism, he has started levdopa but since starting this his symptoms have got a lot worse stuttering his speech forgetting words and the tremors seem to have to got worse than before trying to tell him he needs to go back to GP to tell them about the new symptoms but he says he should give the medication more time is there a reason why the levodopa will do this ?

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Does your Dad have a neurologist or access to a Parkinson’s Nurse Specialist? If so, they need to be your first port of call. I would not give the current medication any longer before doing that. Take care. Doug

Hello Geegee
I would agree with Douglas and try to get your father to go back to his neurologist. Parkinson’s and medication is a hugely complex but important part of managing Parkinson’s symptoms and when things go awry as they clearly are for your dad meds is usually the first thing that needs to be looked at - a change in the dose, the timing even in some cases a different brand may be all that is needed. My feeling is that he has tried the medication regime recommended, he has given it time to work but instead it seems to be making things worse - so it is time to rethink with the help of his medical team.
Good Luck

Hi Geegee,

I’m so sorry to hear what symptoms your dad is going through.
He really is not the only one to have an adverse reaction to certain medications.
As they say, everyone experiences PD differently and as such certain medications that work for someone may not work for you.
I had a very similar symptom with a medication Topomax for seizures.
It honestly was one of the worse medications I have ever been on.
From the first day I took it, my symptoms were virtually identical to your dads.
I could not think of certain words, I felt that I was in a ‘haze’ and I was virtually unable to even pronounce phrases.
I gave it 2 days then basically threw the box away.
However it seemed to work for others.
Your dad really must go and see a neuro, and not a GP, as soon as he can.
It makes no sense whatsoever that he is experiencing those symptoms.
I really believe he should stop the levdopa, before it actually causes more harm than good.

Hello Geegee I have Atypical Parkinson’s & Peripheral Neuropathy & the first drug
I tried was Madopar & after taking one pill for a few days I felt my brain was cooking [felt really hot]. I was told to stop taking it immediately by my Parkinson’s nurse.

My inclination was to have carried on taking it but the expert said stop. I suppose this is quite understandable as we all so hope that the medication will help our symptoms.

By “Parkinism” what do they actually mean? Has he had a DATscan? Has he had a second opinion?

The experts tend to diagnose “Parkinism” when they know we have a problem in the brain-box department but haven’t a clue what it is.

Best of luck.

It’s crucial to consult specialists for Parkinson’s medication adjustments when symptoms worsen, ensuring the best management for individual cases.

Hi everyone,
Sorry to jump onto your question and thread @Geegee - we are going through the same with our Dad.
He was officially diagnosed this Summer, but the symptoms we have noted for at least the last 6-7 years (if not longer).

This summer he finally went to have a diagnosis as he was suffering with heart problems and the cardiologist finally encouraged him to have an assessment - of course the result was confirmed. He is 80 years old.

Since his diagnosis, his sympoms have heightened. He is on medication, but he is very stubborn and will not let anyone check his medication or let us help him organise it. He is on numerous others meds for his heart and other stuff… so it’s very worrying not knowing if he is taking what he needs to and at the right times.

His mobility is decreasing rapidly. He stays in bed until lunchtime and then just sits in a chair for the few hours he is awake - we try and encourage him to take some exercise, but he gets irritated with anyone interferring.

This is affecting our Mum a lot, she is finding it harder each day to try and encourage him.

What I am most surprised about is the fact that my parents haven’t been offered any additional support from the Dr’s. I would have thought that an OT or someone would come and home visit and assess the living situation (he is still getting up and down the stairs and it’s become very difficult)

So many things just don’t seem right, but we don’t know where to turn, and would really like to understand what the care plan should look like for someone who has been diagnosed with Parkinsons.

I am new to this forum, so my apologies if I am not asking these questions in the right place - all advice, hints and tips will be gratefully received.

Many thanks

Hello Kat01 and welcome to the forum.

I was sorry to hear what a difficult situation you are facing and totally understand you don’t know where to turn. The fact is for all sorts of reasons finding out where to go for help or what may help when you probably don’t know is not always easy to find. You wrote that you were surprised the doctor hasn’t offered additional support so, to answer that first. The soort of thing you are looking for is an assessment from a community based occupational therapist and possibly a social worker (it will depend on how the team is organised locally). To arrange that you need to contact the local council. Your mother would also be entitled to a carer’s assessment in her own right, also by the local council. You can usually do that online or by phone, if you want to do so in person you will probably need an appointment. There will be more information about this if you go to the council’s website and search under Adult Care Services.

Second, don’t worry about how you ask your questions here on the forum just do it as you’ve done, that’s fine.

As for everything else you’ve written, it is obviously complex with one issue impacting on another and I don’t think I can say much about that when there is mote going on than ‘just Parkinson’s’ if that makes sense. May I suggest you ring the helpline 0808 800 0303 who may be able to signpost you to appropriate services to start getting some of the issues sorted.

I would add that your father does sound like he may not agree to any referral or support that may be offered. He has the right to make that decision, even if it seems like a bad or wrong decision and that can make getting support in place can be very difficult. I only mention this because you will need to approach the idea of assessments etc carefully to try and help him understand the impact on not only your mum but the whole family and indeed himself.

i’m sorry I can’t offer anything more constructive at this point but I hope it has at least given you a starting point.


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