uk based Liverpool support

[Awebb27]

hi

My dad has bee diagnosed with CBD not sure if it’s better, the same or worse than the initial Parkinson’s diagnosis but I’m looking for any help.

so does anyone know of any CBD supports groups face to face in the Liverpool area?

Not sure I’m doing the right thing joining the site as just scared myself by reading your posts. I guess I need to be equipped with the rocky road we’re going down.

sorry for anyone going through this

[Millidog]

Hi if you call the pspa helpline they can tell you if they run any Liverpool based support groups. They can also update you on the newly diagnosed group they run on zoom. Best wishes x

[Kelmisty]

Hi

Have a look at this website. pspassociation.org.uk

I’ve only joined the online groups as I don’t have time to physically attend any but they can be helpful, also upsetting depending on the subject of conversation.

My Mum has CBD and PSP, and whilst I don’t want to upset you, the future is tough. But live in the moment, enjoy the positives.

In answer to your question is this worse than Parkinsons, in my opinion yes. Sorry.

Sorry you are starting this journey with your dad, feel free to reach out and ask for help. Xxx

[Bergenser]

I'm sorry to hear that this disease has come into your family, yes there are hard times ahead. The PSPA can help guide you through the things that are important to do NOW, some of that might overlap with what you've already been told about Parkinson's e.g. notifying DVLA, getting Lasting Power of Attorney in place, and making sure his home is safe and accessible. If your dad is still relatively well, you might put off using this forum - or be selective about what posts you read, much of it is not relevant now and could overwhelm you. Focus on what your dad can still do and what he enjoys - make happy memories and support him.

As your dad starts needing help, care and supervision, try to get acceptance for external care early on, rather than tell yourself "it's the least I/we can do". The best thing you can do is remain his daughter first and foremost.

Someone told my husband and myself early on "never reject offers of help". It was difficult for me to take that on board, however it was good advice.

I wish you the best through this journey, sending virtual hugs and hope. 🌻🤗

[Sun-flowerwearer]

Hi

Lots of good advice already. My husband was diagnosed in May 2023 and I remember writing a similar introductory post.

I do join in zoom carer groups and for a while my husband listened into the patient zoom meetings. I enjoy the interaction with others and there is useful ideas and info exchanged.

Taking photos and videos now is the one thing I should have done more of especially when my husband was able to speak.

Find a good GP at your local practice as we see the same doctor monthly so she can refer us to various health professionals as required. Prepare in advance so ask for things before they are needed. NHS referrals can take months unless there is an emergency so ask for OT, Speech and Language team now.

It depends on your personality but I joined every group on Facebook, this site, smart patients and have read zillions of scientific articles on the internet as I want to know as much as possible. My husband didn’t want to know anything so I don’t discuss what I read or hear but I feel more in control having knowledge so when changes happen I don’t panic … I do sometimes but I am more able to understand the progression. The forums are fantastic and supportive and a font of excellent information.

Progression can happen slowly or speedily and it’s similar but different for everyone but my husband age 62 went from walking his dog outdoors round a 3 acre field in May to housebound and unable to stand or walk unaided by me in 5 months so be prepared.

It’s a ruthless disease x

[45purple]

Hi sorry to hear about your Dad. Lots of good advice been given so far. PSPA is a brilliant organisation and if you get in touch with them they will help. I joined the Zoom meeting last week and it was great to hear other people’s stories. My husband was diagnosed in 2022 with CBD which was changed to PSP last November.. the decline last year in my mind was quick. Totally dependent on help. Everybody’s journey is different. Sending hugs 🤗🤗💜

[David750]

Hi Awebb27, contact the PSP Association Helpline (pspassociation.org.uk) to talk to someone who will be able to give you full support. There are online Zoom groups and they will know of any face to face groups near you. All my very best wishes for your journey.🙏

[Loveispatient23]

Hi Awebb27, sorry to hear of your Dad's diagnosis, my Father in Law was diagnosed with PSP in October 23. First and foremost the PSP Association are fantastic. All the people on here are very helpful and supportive and I agree, do not overload your mind too much, just dip in and out for the things you need advice on the most as it can be overwhelming.

Sending best wishes to you and your family as you navigate your way through this journey.

[DebHep]

Hi Awebb27 - I felt exactly the same as you when I first joined this group - I like to be informed but also didn't like what I read.

After quietly reading others posts I now have a lot more information- thanks to those who take the time to share !!- I have not been overwhelmed with medical info just learning from real life stories & good info and I now feel confident enough to comment.

My Mum was diagnosed in 2022 has never really talked about how she feels about the diagnosis or the (thankfully) slow progression

So for me knowing I'm not alone and every case is different has helped prepare me a little for the future.

I would say learn what you can from these wonderful people as based on what I read I have already ( calmly & at Mums pace

- had OT raise the toilet seat, add extra handrails on stairs, shower seat etc

- got Mum using a rolling walker on days she needs it "it's just somewhere to hang your bag & take a rest mum"

- completed power of attorney for both parents

- helped mum understand why cutting up her food smaller will help her

- planned a holiday with additional support at the airport

- encouraged my parents to go to a face to face support group

And many more small changes that help life remain living.

I know the time will come & things will decline for us but I also know that sharing with others who understand can really help .

Hope this helps you feel better about joining.

Deb

[PennyJack]

Hi. I live in Liverpool. Unfortunately PSPA don’t have a group in our area-Manchester is the nearest and I do get invites to tune into the monthly meetings however, the timings of the meetings are not good for me so not done that yet. The local council have been great as regards OT, SALT and equipment support. You should take any help offered to you and if you think there is anything I might be able to help you with, please get in touch

[Campsiewalker]

my brother lives with my family here at home. It’s been a slow progression for him. He has a learning disability and thyroid dysfunction that made a diagnosis tricky. It’s really a case of getting your GP aware of the condition, sign posting every care professional to PSPA website and read them to. Be his advocate, but be careful of making decisions quickly. Get advice and take time. My advice also now we are more then 2 years into a diagnosis is look after the carers, you will need support and time to care for you. Enjoy holidays there are amazing places with good accessibility. Get a blue badge so you can all go out and not worry about finding a space. We are now dab hands at good coffee shops and cake is a highlight of the week. But know it’s really tough and the days are long. So look for the highlights they are there xx

[timbowPSP]

There's hope, AWebb and ur attitude really helps! I am 82, M, diagnosis 5 yrs ago, and not yet a badly shit road! Different for all of us. I seem to have the Parki variant which is slowest developing. I have made a 7 page story of my journey which tells you what you might expect ad suggestions what u might do about them. If u want a copy send me ur email address. PSP = Please Stay Positive. V. best wishes TimbowPSP