unable to breathe

Hi everyone. ive recently moved back home for a few months to my Mum and her partners house, her parter has Parkinsons. Many times a week he has episodes that can last all day where, in his words, he feels like he is choking and cannot breathe. His neck (and entire body) tightens up and he sits on the sofa panting, but he says he feels unable to get adequate oxygen. He hasn’t seen his specialist for over a year but they’ve mentioned these episodes multiple times now and the flippant attitude ‘oh it’s just part of the Parkinson’s’ infuriates me. They’ve given him nothing to help try to ease it, but the man literally cannot breathe! My mum recorded an episode and showed the Parkinson’s nurse but again, not interested.
Last night he had a very bad evening and I was scared to go to bed. He is clearly incredibly distressed and it’s awful not being able to do anything.
I don’t feel that this can continue but absolutely nobody is interested, will take it seriously or help us. The only thing that is suggested is ‘to change up medication levels’ but this hasn’t changed this symptom in the slightest. I’ve said the next time they have an appointment I will go, but I know nearly nothing about this… but seeing someone literally unable to breathe and to have nobody in the medical profession interested is terrifying to me.
Thank you.

Does anybody have this same problem or could make any suggestions? I’ve never gotten involved in his treatment but he’s like a father to me and I’m starting to feel as though they’re being ignored. It’s making them both very down and depressed.

Hello Ava22,

Welcome to our community forum. We’re sorry to hear your mum’s partner is undergoing these upsetting changes. As you say, every person’s Parkinson’s journey is different, and predicting symptoms and getting medications right can be a long and extremely difficult process.

It sounds as if he needs better or additional medical care, so please reach out to our free and confidential helpline on 0808 800 0303. This is one of the services they offer. The team is friendly and highly knowledgeable with their own fleet of resources and they are always happy to help. Do call them, and also have a look at these additional support services. Your mum’s partner is not alone in this and neither are his carers, including yourself.

With our warmest welcome,

Jason
Forum Moderator

Hi Ava,

Parkinsons can cause shortness of breath later on in the illness but there are lots of other causes of SOB. There will be letters from his reviews in clinic and they might say why the PD team think PD is the cause.

I would discuss his symptoms with his GP, they can treat and refer to other doctors as necessary. I’d also phone the helpline Jason mentions.

I hope things get easier soon.