Mum has PSP

[Holiday508]

Just wanted to say Hi ... mum got her diagnosis yesterday, we are not sure how long she has had it for, one of the main problems is swallowing food and drinks .... I am shellshocked by this diagnosis, would be great to hear from people who will understand how I am feeling, and how I can be of help to my mum xxx

[doglington]

Welcome. I remember that shell-shocked feeling. Here you will find others who echo your situation and many to help you deal with the present issue. Most important is a private place where you can rant if you wish. There is always someone there or has been there.

Tell us more when you feel ready. Can she swallow or is she on a pureed diet ?

love, Jean

[Tippyleaf]

Welcome - sorry you have had to join us but this is the place to come for practical living with it support!!

My husband diagnosed with PSP in 2013 his swallowing probs only really started 18 months ago .

If your mom has not already had a Speech and Language Therapy assessment (SALT). Would ask for one ASAP. They can advise on thickeners to add to fluids, diet, strategies etc.

We find using a straw makes a real

difference - less coughing. If using a mug or glass choose short fat ones rather than tall thin ones - the latter make you tilt head back = choking in our house!!

I make iced coffee and smoothies both of which are naturally thick . At first my hubby hated thickened tea and coffee but quickly got used to it.

Hope some of the above helpful. There are some wonderfully experienced folk on this site who I

Am sure will help if you have any queries

Take care

Love Tippy

[Holiday508]

They initially thought that mum had had a stroke ... Mum can swallow but has to have thickener in her drinks, which she hates, we have found that milkshakes are good and stop the coughing, her speech is slow and slurred and she is walking very slowly now, she has had a couple of falls ... she is 83 very independent and only gave up working in Sainsburys two months ago ... so nice to have people to talk to ... thank you

[Hidden]

Welcome to the club. It takes a bit getting use to the idea of this disease. It presents itself is so many different ways. No two people will have the same experience with it.

If your mother was working up to two months ago she’s in good shape. There is the onset phase then the middle phase which can go on for who knows how long. All you can do is take it one day at a time.

Being in the UK there are a number of services available to you. Other people who are in the UK will be able to tell you about those.

[Yvonneandgeorge]

Yes welcome to the best site ever, I make smoothies which george likes, is your mum on a soft diet? George is on a soft diet lots of coughing and choking. So many lovely people on here if it wasn’t for them I would of given up a long time ago. Yvonne xxxxx

[kenh1]

Take one day at a time. I find strength is given for the hour of need and true love blossoms as the days go by. PSPA groups, this site, loving friends and family all contribute. You are not alone.

Ken.

[Marie_14]

She is some woman your Mum! To have worked until 2 months ago is amazing. Glad she has thickener although it looks like wallpaper paste! My husband hated it too. So he stopped drinking his tea and water! I gave him Smoothies instead and he was alright with them. You can make them at home which is best but can buy them if needs be. Keep her teeth clean and the insides of her mouth.

Help her to stay mobile by doing exercises. You can buy an exercise machine which she can use to strengthen her muscles while she is sitting. Keeping her mobile is important. Has she got a riser recliner chair? She will need it.

You will need an OT who hopefully will start to get you equipment you will need. Your Mum's GP should contact the OT and the District Matron.

Also contact the local Hospice. When you want a day off your Mum can go there and be spoilt. They really are very good. They are not just for when a person is dying either so don't let her think that. They will also help you with advice.

This site was the greatest help to me and so many others. So welcome, but sorry you need to be here. You will be able to ask all the stupid questions here and have a meltdown if you need it! PSP sadly is a cruel disease. You will always get support and understanding because we know what you are talking about.

Much love to you, and courage, as it is not easy. Not easy for your dear Mum either!

Marie x

[LuisRodicioRodicio]

Sorry to ear her diagnosis.

On personal-private mail I am sending our experiences on PSP during the last 6 years.

Best of luck.

Hug.

Luis

[Willow_rob]

Welcome but sorry you have had to join. I would recommend that you read posts by Kevin who has done much to explain the minefield you have to negotiate in order to try to get funding for a care package which you will need eventually. In addition this site is excellent in offering emotional support and does allow you to have a good rant should things get on top of you. Thinking of you and your Mum. Rob

[cameoboy11]

I have recently been diagnosed with CBD and have found the smoothie in Sainsburys really helpful with swallowing. Jo x

[Holiday508]

Thank you all for your lovely message ... you have given me an understanding of this awful disease ... you have also made me feel comfortable to ask any questions no matter how silly or small they are .... off to make some memories with my mum 😊

[daddyt]

Sorry to hear about the diagnosis... you'll find good support and advice here.