Speech and Language Team visit today. A positive experience.

[Sun-flowerwearer]

This visit was arranged when I rang up about my husband having difficulty swallowing. We are based in Devon. I received a very helpful phone call initially from one of the team and then today, two weeks later we had a home visit from another member of The Team.

Firstly told me they had other PSP patients and many other patients with neurological diseases that had similar issues regarding swallowing and speech which was a positive start and she was absolutely fantastic with my husband during the appointment.

She asked him questions slowly and calmly and waited patiently for answers and didn’t hurry him. My husband was able to answer her too which surprised me as he hadn’t been able to speak to me all morning. She was much more skilled at communicating with him than the Consultant Neurologist! What I really appreciated was how she took the time to explain why things were happening..why my husband struggled to speak sometimes or could only say yes and no, why his mouth filled with saliva sometimes, why he struggled to swallow certain foods and medicines etc. She gave us lots of information and lots of useful advice. Little tips like have a jug of squash or water to pour drinks from so it’s clear how much liquid is being consumed (one jug, two jugs etc) as hydration is so important. She brought out laminated word boards with communication bites to point to when it was too tired to speak..like…I’m tired, I’m hungry, I’m Thirsty, yes and no and also suggested he create his own useful word list on a laminated card for the future. She said she’d send him little cards to hand out to people to explain that he could understand them but they needed to be patient and give him time to respond… like the PSP Organisation do. We both felt boosted by her visit and reassured that we had a Team of people that we could phone if we needed advice going forward.

[Willowden]

That is good news. Our SLT is a massive support and great with mum😊

[Birdbag]

that’s excellent! We had a physio visit yesterday that was similarly boosting. And oh yes agree absolutely SO much better at communicating than the neurologist!!!!

[Rose1sunflower]

I’m really pleased you have had a good experience with your SLT. Makes such a difference when the therapist has time and experience doesn’t it? Feels so good that you have somebody working with you.

Have to say though we have an excellent registrar who has time for you and explains things, he is now a Consultant and moving on, sad to see him go but have to say there are some out there!

Hope you continue to have the support you need, Friends I meet up with and chat to, that I met on the PSPA zoom meetings, are also really supportive.

[Sun-flowerwearer in reply to Rose1sunflower]

Good to hear you’ve had some good responses too. I have asked various medical friends if they have heard of PSP… and many have said No so it was heartening to meet someone that seems to be confident with the diagnosis.

[Richard33]

I have been lucky that I have been able to afford a private Speech Therapist who used to come in weekly and help Ruth maintain her speech and give tips on swallowing. Now she comes in fortnightly and is still the best person who can communicate with Ruth - and Ruth can communicate her frustrations (mainly about her husband!)

Richard