My partner has both PD and high functioning autism. This creates a lot of stress in our relationship through difficulty in communication. Has anyone else experienced this as a carer?
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We’re so sorry you and your partner are facing difficulties, Mary5. If either of you or your partner or both of you would like to talk to an advisor please contact us at 0808 800 0303, it is completely confidential.
Take care.
Parkinson’s UK Moderation Team
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I have experienced myself becoming more autistic as pd progresses. basically, the parts of my brain that i formerly used to carry out the normal-person protocol is being damaged and also redirected to overriding tremor and just plain exhausted. this has been hard on my partner (and thus indirectly hard on me also).
it helps a bit to learn about autism. some of the topics i found most helpful include:
- monotropism,
- the “double empathy problem”,
- the “intense world” hypothesis
hope this is somehow helpful!
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This is a very late reponse but I have only just realised that my PWP is probably also on the spectrum - it is not something I have ever thought about before but a friend whose partner lives with autism remarked on similar character traits. And yes - it explains a lot of the past 18 months when characteristics such as hatred of change; extreme sensitivity to noise and bright lights have become more marked. I put it down to the progression of Parks and yes it is…but I feel that progression is bringing out traits often associated with autism. So I went to the research and read of the correllation particularly with early onset Parkies - my PWP was diagnosed at age 49….he is now 69. What it has done is give me a pathway to navigate the coming ups and downs - he had many hospital/hospice stays over the past year and they were super-traumatic for him………this suggests why and helps me think about that situation should it arise again.
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Hello , my wife has also had it for 20 years , now 63 , young onset .
So I believe there are around 150,000 people in the UK with PD only 2 % are young onset , I also believe that it’s only 1 % of them have had it for 20 plus years . That’s Around 300 people ,
Saying this as I believe again that consultants don’t have a lot of knowledge about PD patients haveing it for such a long time 20 plus years , and as everyone is different there seams to be no one answer .
We are having a lot of difficulties with on/off hallucinations, paranoia, delusional behaviour.
And what most of it comes down to is dopamine too much to little as in ADHD , BIPOLAR, Tourettes .
Not to sure of the medication .. rotigotine Patch ?
From above site
Dopamine (DA) is indeed one of the main neurotransmitters in charge of social behavior and social cognition and of control of movement ,m Several researchers in this area proposed a framework that clarifies the role of the dopaminergic system in ASD
HI @Polomint thank you so much for sharing your experience with the forum. We’re so sorry too to hear that your wife is having difficulties with hallucinations. We have this article on our website, which might contain some useful information and tips for you both: Hallucinations and delusions | Parkinson's UK.
You may also want to speak to our free and confidential helpline, as they can offer expert advice and support for anyone affected by Parkinson’s on: 0808 800 0303. Thank you for reaching out 
The Parkinson’s UK Moderation Team
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Hello, I really appreciate your advice , but unfortunately been there done that as they say . And chatting to your local rep for Lincolnshire.
I will try your team again , but after nearly 3 years starting from olfactory hallucinations it’s been hard for me as a carer .. I’m looking at everything I can find on medical websites about Dopamine , rotigotine DAs .
Every day is a total difference I think we have found an answer and that day it works .. the next back to square one . We have a consultant appointment soon but unfortunately I don’t have much hope as all he wants to do is remove the DA which means my wife can not walk .. thanks again for you and your team at PDUk . Be in touch soon .
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Hi @Polomint we completely get where you’re coming from. It really must be so tough for you both. We mean it when we say we’re here for you though. Every step of the way. We’ll keep our fingers crossed that the consultant appointment ends up being a positive step in the right direction.
We’re sending you both all our best wishes
The Parkinson’s UK Moderation Team
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