Occupational Therapist

[Kerrywhite75]

Hi All,

My Father was finally diagnosed with PSP on Friday, for 4 years I have known that something was drastically wrong with him and I was seeing him deteriorate rapidly, but GP's just said they couldn't find anything wrong and that it was simply just old age (age 78)! My Father was a professional Footballer and has been fit all his life, strong and full of character yet he was slowing down, struggling to speak / think and had this blank look in his eyes which was heart breaking to see. Last year he was diagnosed with Parkinsons Disease and on the follow up appointment with the neurologist on Friday the Dr soon realised that he had deteriorated quite dramatically and that it was in fact PSP.

I didn't come away with much other than he was being referred for Physio and Speech Therapy, my question is, is he now under an occupational therapist from this referral or do I need to contact the authorities for him?

Thanks

[Kevin_1]

Hi Kerry

I'm sorry to hear your news.

A 'local' neurologist is able to see gross symptoms, but they don't all have the equipment to do the highly complex tests That a specialist Neurologist does.

I would strongly suggest you ask your GP for a referral to a 'tertiary' neurologist. A local Neurology consultant (Secondary level) does not have access to the wherewithal to make a good diagnosis. (or is that neurologist already a tertiary one?) With the tertiary system engaged you will do better with applications for CHC funding and have better support in managing some of the symptoms he will develop later.

As for an OT just telephone the local Social Services and ask for an assessment - tell them the diagnosis.

The OT department can put in a lot of equipment on loan... no charge. They can also advise on care, moving and handling.

Ask the physio about exercise... exercise keeps the muscles working and preserves functioning. It makes a big difference.

Does he live alone? Falls are a core symptom and can be dangerous because the person is unaware that they are falling and they do not protect themselves. Another thing to discuss with the OT. Do go to the PSPAssoc. website and find the info. papers for professionals and ask them to read them before they come out to assess if they have no previous experience of PSP. Otherwise they are likely not to understand the need or risks. That' important.

Sorry - long answer. I hope some of it's helpful.

Best to you both

Kevin

[Kerrywhite75 in reply to Kevin_1]

Thank you very much, your answer is extremely helpful.

I'm not sure regarding the neurologist, I will enquire about this on Monday also call Social Services.

My Father lives at home with my Mother however I have noticed a decline in her health also recently as my Fathers illness is progressing. We have been so concerned with him , we have totally missed this with her and she is a shadow of her former self within a 6 month period. My Brothers and I are looking in to moving them closer to us and also in to a ground floor property as at the moment they are on the first floor which he is struggling with due to the stairs and now very rarely leaves home.

Thanks again for your advise, its greatly appreciated.

[Kevin_1 in reply to Kerrywhite75]

No problem.

If you have not done so already - When they have moved you might want to consider Continuing Health Care. An NHS free at the point of delivery funded care service. If your father's condition warrants it.

Best of luck to you all.

[HilsandR]

Hi Kerry (our daughter is called Kerry) - when my husband was finally diagnosed (he has PSP) we were immediately put under the care of a Parkinsons nurse who referred us to the various agencies we would need, i.e. OT and neurophysio. We alternate between seeing our Parkinsons nurse and the neurologist and with the other agencies in place we manage. I have contact details for our nurse and can contact her at any time with any concerns. As you are probably aware, there is no treatment or cure for PSP, it's just a case of managing the symptoms. I assume that you are in the UK but it can be a bit of a postcode lottery regarding some of the services that are available. Physio is a must as is getting someone in from OT to assess your dads needs to make his home a safe environment. Your Neuro team should make these referrals for you. Try not to worry about everything at once, just the important things, eventually you will find things slot into place. This is a tough journey for all but somehow we all keep treading water.

Best wishes to you and your family.

HilsandR

[Kerrywhite75 in reply to HilsandR]

Thank you very much, you have all been extremely helpful, I'm so pleased I joined!

Its extremely comforting to know I can ask a question and it be answered truthfully and in detail.

[LuisRodicioRodicio]

Hi Kerry!

Kevin and HilsanR have expressed the fundamentals about PSP.

By internal-personal message I send my experiences that I hope will be useful.

Health and courage.

A hug.

Luis

[Kerrywhite75 in reply to LuisRodicioRodicio]

Thank you so much, amazing information!

[Artteach10]

My husbands story is similar. Last year a Parkinson diagnosis and then a second neurologist said PSP in January. It is all overwhelming but I just try to adjust to each progression but it is not easy. We added bars in the shower, got a lift chair, a cane, now a walker, a different car that is the right height, etc. A day at a time and enjoy what you can and hope I can stay strong. Hugs and we will help each other. Nancyxxx