Progression ,still no cofirmation

[autex2000]

My wife is starting to deteriorate quite rapidly now, but no one in this area of Lincolnshire seems to know anything called PSP and trying to get the Specialists to acknowledge it seems impossible, but she is showing all the signs of PSP, Falls (backwards) difficulty swalloing, Slavering, running nose, difficulty speaking ( getting progressively worse). Dopamine has no effect. can't concentrate, blank stares, hardly walking at all and with support and maximum 10yds.

This is a woman who played, Tennis, skiied, Golf, Times crossword and an excellent Bridge player. She is well aware of what is happening to her, but not of what I suspect,

[Millidog]

Hi I am sorry to hear about your wife and the frustrations you are having with medical professionals. I'm not in you area so can't advise on neurology specialists that may be accessible. I would advise though to call the PSPA helpline. They cover all of the uk and should have some knowledge and advice on what you may best do to get help. There number is 0300 0110 122 take care Milli dog

[autex2000 in reply to Millidog]

Thanks Millidog, I will follow you instructions.

[Bergenser]

I'm so sorry to hear what is happening to your dear wife.We live in East Anglia so there are probably more options here - we did use a private specialist to get a more specific diagnosis after the GP suggested Parkinson's Disease. Going private sped up the time to diagnosis (including the important MRI scan of the brain) and gave us access to neuro-physiotherapy in the short term. It still took a long time before the NHS teams got involved. I wonder if there is a "Neurological Navigator" for your county - there was one in Hertfordshire which was very helpful - but when we moved a few miles across the border to Essex there was no such thing and we needed to find out what teams were involved - PSP really requires a cross-discipline approach.

The PSPA can help you find the right contacts in your area. They helped us access the Adult Speech and Language therapy team which was timely.

Overall if dopamine has no effect, I would suggest you ask about Amantadine - also about anti depressants which I think often has a wider positive effect with PSP. Both of these are used with PD as well so it might not depend on a confirmed diagnosis.

I wish you well and I am truly sorry for the journey ahead - one thing I've learnt is "accept help when it's offered". Hope and hugs 🌻🤗

[autex2000 in reply to Bergenser]

Thank you for the information, I will try that, she is already on anti depressants.

[Scottoppy]

Ask to be referred to a specialist neurologist, your nearest will probably be Cambridge. Don't let up the requests, the squeaky wheel gets the grease. Millidog has it right

[Bergenser in reply to Scottoppy]

The "clinic for disorders of movement and cognition" at the Herschel Smith building, Addenbrooks, Cambridge. They are really good if you can get there, ask to be referred to e.g Dr Tim Rittman or James Rowe.

[autex2000 in reply to Bergenser]

Thanks for the information, someone else has also suggested the same Hospital, so I will try and contact.

[Redjune1]

I don’t know whereabouts in Lincolnshire you are, I live in NE Lincolnshire and my husband is under neurology at Hull Royal Infirmary. They have been very good to us. He is on Sinamet but it has no effect on my husband, but we are told to keep him on it because he might be worse without it.

[AutumnRiver]

It is desperate that your wife has not got a definitive diagnosis. Go refer yourself to Prof James Rowe at Addenbrookes. There might be a waiting list as we had to wait for about 6 months for my husband to be seen but at least you will get aproper diagnosis. I wish you all the best and share your sadness and frustration .

[autex2000 in reply to AutumnRiver]

Thank you for the information it seems that Addenbrookes is the centre so I will try and get an appointment for her, but travelling is now a problem for her. She thinks they have given up in her!!

[Bergenser]

Travel can get very difficult - there may be a hospital transport or voluntary community transport scheme near you with the right kind of vehicle to make it easier at a low cost

[ChocolateFaceTeddy]

Went private on my GPs recommendations to get a diagnosis maybe you can do the same if you need it and also I had speech and language and I banked my voice so if I my voice went I had it Banked take care lots of love to you all