I am a Carer for someone with vascular parkinsons. Very frustrating as no one is letting me know what to expect. Been told vascular parkinsons is different to parkinsons but nothing else. I would like to know more about it . He was diagnosed in March 2020 and is now completely bed bound.
Hi @Pamela1956 and welcome to the forums. I’m sorry to hear that your husband’s Parkinson’s is causing him to be bedbound, I’m sure there will be other forum members who will be able to share their own experiences of vascular Parkinson’s.
You can also contact our > Helpline and Local Adviser Service on 0808 800 0303 or email: [email protected] where we have specialist nurse advisers who will be able to discuss your concerns, and our helpline and local advisers can also link you in to support in your area.
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…Lost something there - sorry! What I was trying to say was that support for the carer is just not possible. A phone call doesn’t cut it for me. If I don’t get a decent night’s sleep soon, I will be the one in care and then what?
Welcome to the Parkinson’s UK forum.
I’m really sorry to hear that you feel support is not there for you as a carer, we have many people on the forum that will understand some of the challenges you face as a carer and we’re here to help you in any way we can so please don’t feel like you’re alone.
To answer your question about support for carers, Crossroads Carer Services Tyne & Wear are a local charity working to improve the lives of carers, enabling them to have a life of their own and sustain their own wellbeing. They provide support, including short breaks, for both adults and children. I would advise you to get in touch with them on 01207 549 780 or email them at [email protected].
We also have a lot of useful information on the Parkinson’s UK website which you may find helpful as well which you can find here: https://www.parkinsons.org.uk/information-and-support/caring-someone-parkinsons
You are also welcomed to give our helpline service a call for more support.
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Im keen to follow your thread as they are currently querying vascular parkinsonism as the reason for my fathers rapid decline. not very long ago he was given a PD diagnosis and i was hoping to see a Parkinsons nurse, but she is not coming out atm because of the question mark over the diagnosis. they will not come out to someone who doesnt have PD they said. I’m completely in the dark about what is going to happen to dad, we’ve gone from minimum care needs to 24/7 needs with mobilising and personal care and eating in 6mths. I feel I cant go on at them moment. we are on the brink of a crisis and cant seem to plan our way out of it.
Sorry it’s a bit grim.
I’m suspecting that perhaps I have this too. My PD symptoms are strongly linked to my head position.
I was well (really fit) less than a year ago, and this struck suddenly, and now I’m essentially bed-ridden.
I’m so sorry to hear that. what an horrible condition. thank you for sharing your experience
I’m so sorry to hear about your dad’s declining health. it’s understandable why you and your family feel distressed about it. Your dad’s situation seems quite unique and so I would encourage you to speak to a Parkinson’s nurse via our helpline service. One of our adviser’s would be able to offer you more support on this situation so please give us a call as soon as you can on 0808 800 0303.
This is exactly the same story as our journey. Because of the pandemic dad’s diagnosis was delayed I think. He did have a critical aortic stenosis during 2020 but didn’t seem to pick up we couldn’t get hold of a face-to-face appointment with the doctor so it wasn’t until 2021 Dad was diagnosed with Parkinsons but he kept having small episodes of fainting and weakness which I interpreted the strokes ( he had a Tia in his eye in March 2020). In October 2022 dad had a fall from which he’s never really properly recovered and since then his deterioration has been rapid. We struggle to get any help from any service and paid privately for dad to see a consultant up here when he came to live with it. But now he can barely stand and walk and he’s falling over a lot he’s had to move into profile bed with bars to keep him safe at night we’ve had to remove every single trip pass it and it takes two of us more or less 24 hours a day to keep him safe. Well the hospital consultant was lovely the other day I just simply isn’t a back up either for carers or for him. And we are in a catch 22 situation because Mike and I are looking after him so well but he’s not in danger of going into hospital or becoming a statistic so we just left to get on with it and we both knackered.
Since this thread is resurrected I’ll provide an update -
A year ago I was bedridden, with a diagnosis of Parkinson’s and Postural Instability, and desperate to get doctors to believe that my symptoms changed with my head position.
Then, when a new neurologist saw what I was trying to tell everyone, I was diagnosed with a spinal CSF leak and treated with epidural blood patches, which have helped tremendously. I still have parkinsonism (confirmed by DaTscan), but it’s mild, and I no longer have Postural Instability at all.
This is a less well known, and potentially (/partially) treatable, cause of parkinsonism.