Diagnosis received yesterday.

[Italiansunsets]

My lovely mum finally got a diagnosis yesterday after approximately 5 years of us noticing symptoms. Her consultant was amazing and I could have cried when he gave her the diagnosis, not only because of what the illness is but more so because it was the first time that she and my sister and I actually felt heard. As he talked us through the illness it felt as though he was describing our mum.

The future feels very scary at the moment, but I want to learn and prepare as much as I can. Any advice, warnings or feedback will be very gratefully received.

Thank you x

[tina7mahal]

Getting my mum's diagnosis, had also taken a few years of going to various specialists and getting nowhere.It was a hospital consultant, who when he asked her to follow his finger up and down, immediately noticed she was unable to do so and with her other symptoms told us it was PSP.

Fortunately whilst looking for more help and information online I came across the PSP Association website. I contacted them and they were so helpful. The support and information we got from them helped us such alot.

It's not an easy journey when you do actually get a diagnosis of PSP. With the support of PSP Association it helped understand more and find ways to support mum.

Sending love and strength

[Italiansunsets in reply to tina7mahal]

Thank you, I already feel heard. It has been such a frustrating journey to this point but I think this forum will be a lifeline.

[Millidog]

I am so sorry to hear PSP has come into your family but a warm welcome to this amazing group of informative and helpful people who know what you and your mum are going through. If you haven't already, do call the PSP helpline, they are very good at talking it all through - your concerns, what key actions to take, which health professionals to contact and they have a wealth of information on their website that's worth reading.

Some key things include Attendance Allowance for mum, Blue Badge, registering yourself as mum's carer with GP so you can speak on her behalf, Power of Attorney, looking into preparing your mum's wishes (Advanced Care Wishes) for her future care etc.

Key health professionals will include OT for equipment such as beds, walkers, stand aids and advice on such as home and bathroom adaptations, Physio for exercises, SALT for swallow, food and drink, voice banking, wheelchair service, continence nurse etc.

It's daunting and my apologies for throwing all this info at you but I found it worth getting the ball rolling on everything i could before I needed it as things can change quickly.

Look into care provision and support in your area, good care companies or individuals so you have ready for when you might need to start some care support. Many of us have started with a few visits to help with care or company and increased as needs have. Also worth looking into Care Support organisations, charities that can help and if you have hospice support. Every area is different but Google is a good way of finding out what's available.

It may be early days but its also worth looking at CHC which is NHS funded care. Its very hard to get but can be invaluable and you can find all about it on line- criteria, checklists, assessment process etc

And lastly but importantly ask away on this site, ask any specific questions and you'll get informative and experienced replies, search the site by subject and you'll get lots of info from past posts and if you want a rant the people on this site are here for you.

With very best wishes Millidog x

[Italiansunsets in reply to Millidog]

Thank you for your warm welcome and for sharing your knowledge. I certainly have a lot to be thinking about and will be taking your advice.

I am feeling really overwhelmed at the moment but you have definitely helped me to start a list of priorities.

Thank you again x

[autex2000]

I am so sorry,my best wished. I lost my wife a few weeks ago and the medical wizz kids in North Lincolnshire still did not acknowledge it, It was "Parkinsonism" according to them. Beware the SALT team my wife had capacity up to the end but they furnished her with a NBM ticket for 8 days in the hospital, and then released her to die at home. The disease starts slowly as you know but it speeds up towards the end, This forum is excellent make sure you ask for all the help you can. We were fortunate, the care we received from the council and the care teams themselves was brilliant, as were the nursing staff.

[Italiansunsets in reply to autex2000]

I am very sorry to hear that your wife had suffered in this way. My condolences to you and your family. I am relieved to have found this forum, I already sense the knowledge and understanding from what I am reading.

Many thanks and best wishes

[softiesimon]

I’m so sorry to hear about your mum but as others have said, the PSPA are a good source of info.

Get yourself a desk diary. Keep notes of how your mum is doing and any signs of deterioration and how you and she are dealing with it.

Note appts and what is said and done. Take the diary or notebook so you can write down what is said and also any questions that you or your mum have.

Note down all contact numbers and email addresses.eg therapists, doctors, nurses, social workers etc etc

And anything else that might be useful!

My diary was by my side nearly twenty four seven.

All best wishes to you and your mum x

PS do take care of yourself. It will become necessary to have time out every week and later on have respite for your mum so you an get away for a week or two to enable you to recharge and then return to you caring role.

[Italiansunsets in reply to softiesimon]

Thanks so much, I will be taking your advice and will definitely start using a diary. As you can imagine, it's a bit overwhelming at the moment but I am so grateful to have discovered this forum.