Parkinson's Disease

[scoz64]

I am carer for my husband who has Parkinson's Disease.  I would really like to connect with others who are caring for loved ones with this terrible disease.  Some days are such a struggle.  

[hanami]

Hi there @scoz64 

Welcome to the Sane forums. I can only imagine what tough role you have as a carer of someone with Parkinson's. I'm wondering if you have seen this website https://www.parkinsons.org.au/i-am-a-carer It has information that are relevant to your situation and also has links to support groups. 

sending strength 

Hanami

[scoz64]

Thank you Hanami. Yes I have visited the Parkinson's websites. Have gathered tons of information over the years. It is all great on paper, but when it comes to the practicalities of everyday life it is a different kettle of fish.  

Support groups are few and far between out our way.  

My biggest issue at present is dealing with his psychosis.  He is paranoid and feels that people are stalking him and causing things to break and get lost just to upset him.  This is an ongoing issue.  I am after information on coping with this issue.  I see info that suggests patience and to not suggest that the things he perceives happening aren't.  That is all well and good, but his paranoia affects my everyday living as well, and there is only so much one can cope with.  It gets to the point where it is so imbedded in our life that I start to believe that his delusions are real.  

He did have medication to take for the psychosis, but he didn't like to take it because it made him sleepy and he was worried it made him less alert to 'the things people were doing to upset him'.

Sorry for the rave.  Just very frustrated at the moment.  We have an appointment with his Neurologist coming up.  Maybe we will get some assistance there.  Not hopeful though.  Antipsychotic Medications that Parkinson's sufferers can take are very limited.  

[Emelia8]

Hi @scoz64 and welcome to the forums.  

I can understand and sympathise with you on what you are going through in caring for your husband with PD. 

I was full time carer for my husband until he passed away suddenly last year.  Among some life threatening illnesses, including stage 4 cancer, he suffered from Parkinsons Disease.  

PD is a disease which has so many unexpected, unknown and insidious side effects.  Most people have no idea,  unless they are living with it. 

I do hope the Neurologist is able to help,  but sadly there is little they can do with some of the side effects.  Most of the time its just a matter of ever increasing medications. 

You are so right in what you said .. it impacts the PD sufferers loved ones in a huge way.  I hope you have access to support.  Whether that be via loving family and friends or professional support. So important to look after yourself. 

Emelia 🌷

[hanami]

Hi @scoz64 

Sadly that's so often the case. These organisations look great on paper but don't live up to it in reality. I'm sorry that's the case again for this one. No need to be sorry for the rant! This is a safe space to let your emotions out. I'm so glad @Emelia8 gave you a lovely response. I hope more members can relate and reach out. I'll tag some more members who are wonderful at welcomes. I look forward to seeing you around. 

Hugs

Hanami 

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[LizzieLou]

Hi scoz64,

I am very interested about your situation, it reflects the situation with my spouse, who also has Parkinson's Disease. He has had a mental illness since age of 33, and  we managed to get through family life for most of the time until older age. He slowly became more  delusional and paranoid. Parkinson's disease was diagnosed eventually which makes me wonder about the connection. There is certainly a complex situation, unfortunately doctors have tended to treat the issues as two different illnesses, but it seems  obvious they need to be adjusting treatment to suit both. As a carer I find things overwhelming at times, I understand your situation.

[scoz64]

Thank you Emelia8.  So sorry for you lose.  I am really not looking forward to being there myself :(.

Yes, Parkinson's is so complex.  People think that it is purely a movement disorder, but it affects all parts of the body.  Yes, it is truely insidious!

[scoz64]

Thank you LizzieLou.

I have read that there is a connection between Parkinson's and mental illness.  ADHD type conditions and depression might be forerunners.  In addition, I believe that Parkinson's medication has been linked to the psychosis that many experience.

[Shaz51]

Hello @scoz64 , how are you today 

@LizzieLou , @hanami , @Emelia8 

[scoz64]

Not doing too bad.  Really looking forward to hubby's next Neurologist appointment.  Hoping to get some positive feedback on a new drug treatment I was reading about.  Its an ADHD drug which has shown to be affective in treating the compulsive behaviour that hubby exhibits.