Confirmation Brian has PSP!

Four years ago Brian suffered a Pulmonary Embolism affecting speech and slowing movement, where hiking up hills became ambling to the bus stop! Two years later the first sign of PSP was a backwards fall down our twelve stairs. Last year whilst getting new glasses he confused everyone insisting he could see better with his old pair. Specsavers were wonderful testing everything twice but still he couldn't see. I said something would turn up and it sure did!

In March the backwards falls started, he became extremely unsteady, with twitching limbs, shaking hands and disturbed sleep. Until then he refused a Doctor but now no choice. Having a 'lightbulb' moment and checking 'Google' I asked if it could be Parkinson's - it was a possibility and Brian was referred to the 'Falls Clinic' but falls came thick and fast and he was fast tracked to a Consultant who immediately started him on Madopar. In May, first diagnosis of PSP with referrals to a Neuro Specialist, plus Occupational and Physio Therapists and Madopar doubled.

Between diagnosis I was at rock bottom until I found the PSP Forum where you all welcomed me so warmly, giving me hope and guidance. Last week we received confirmation and we are now in the loop and receiving help.

I know this is just the beginning but a problem shared is a problem halved and I take this opportunity to thank you all for help received and that to come and send my best wishes to you and your loved ones.

Lesley x

[abirke]

Well Well come Lesley...I'ts not great to have PSP but its good to find out what it is....I am a little confused, however, Have they found the out his sight problems and his shaking problems>

AVB

[Hidden in reply to abirke]

You are so right it is a relief to know what you are dealing with.

It was the falling backwards and the up and down movements of his eyes that helped them confirm it. At the moment the Madopar tablets have helped a lot with no falls recently and his hands don't shake so much.

He is going to have 'prism' glasses to help him see better going up and down stairs, he is fighting against a stairlift!

[NannaB in reply to Hidden]

Hello Lesley, I'm sorry about the PSP but it's good he has finally been diagnosed. When he gets the prism glasses, you try them on first to see what he will see. I don't think it's advisable to let Brian walk with them on and I think going up and down stairs with them will be very dangerous. They are brilliant for watching TV, seeing food on the table and reading.

C's OT said don't get a stair lift but we ignored her and with supervision and a waist strap, it kept my husband sleeping upstairs for nearly two years longer than it would have done without it. Before we got it, I walked upstairs behind my husband, almost pushing him to stop him falling backwards but bought the stair lift when a newly made friend said her husband who was diagnosed with cancer fell downstairs when she was doing the same as me. He fell onto her, she fell and broke her back in 3 places, spending the rest of her husband's short life in hospital.

Think now about bathing, showering etc and how you will manage if he can no longer walk or stand. If you think about it now, you can maybe get things in place before it's needed. Alterations can take a while if needed.

It's good you are now in the loop and there is a lot of help out there although finding it can sometimes be a challenge.

Best wishes.

X

[Hidden in reply to NannaB]

Hello NannaB, Thank you so much for your reply, I will certainly look thoroughly into all of this and try the prism glasses. I was going to say they don't know a lot about the things they recommend but I realise its probably the PSP they don't know well.

I am so sorry about your friend how very sad. I think the same as you about the stairlift because I feel its an accident waiting to happen every night when I follow him up even though my arms are tightly wrapped round the bars. It was the Consultant who referred him for the glasses to help him on the stairs!!!!

Thank you I have learned a lot today most importantly to check everything out before going ahead. Luckily I am very forward thinking and will certainly look into all the things you mention.

Best wishes

Lesley x

[Heady]

Hi, stair lifts, actually aren't recommended for people with PSP, unless under "exceptionally" good supervision. They lose the ability to assess risk, therefore think they can do it all!

At least now with diagnosis, you know what you are fighting, all you have to do now is teach everyone you meet, including the professionals about PSP.

Don't panic, we will help. Ask any question, are you in the UK? Please let us know, so the right people can give you precise information.

The first and most important thing to come to terms with, is life is NOT over, changed yes, but never over. You can still go places, travel, do a lot of things on the bucket list. Not all, but we all leave it too late for some things!

The secret is taking one day at a time, let tomorrow take care of it self, today has enough challanges. Be as positive as possible. Certainly get your husband to specialised exercises, S went to some for Parkingsons sufferers, doing multi directional movements. I am positive it kept him out of a wheelchair for quite a while, certainly he is still maintaining his weight baring very well.

Sending big (((hug,))) as I know you will be needing one at the moment!!!

Lots of love

Heady

[abirke in reply to Heady]

So true Heady....what an encouraging post!

[Hidden in reply to abirke]

It certainly is!

[Hidden]

Thank you so much Heady. I didn't know about PSP and stairlifts, the Consultant, Physio and OT all recommended he had one!!!! I just hate him on the stairs after he fell backwards down all 12 of them two yrs ago - the only time I wasn't behind him, maybe that was a good thing! Hopefully the prism glasses will help.

Thank you for all your help and the hug, one back for you too, take care, Lesley

[Heady in reply to Hidden]

Hi Lesley, I have got my information from people on the site, I certainly wouldn't have trusted S to have used it safely, when he could! Don't beat yourself up about where and how hubby falls, it's amazing what they can do, the second you turn your back, but I guess you know that already!!!

Lots of love

Heady

[Hidden in reply to Heady]

Hi Heady, I'm learning fast! In answer to your orginal question we are in Lancashire, UK. I must say the care and help we are receiving from the NHS and local services is excellent.

Lots of love

Lesley

[Heady in reply to Hidden]

I hope you have their names, so you can call on them again! Good service and more importantly, understanding can be "patchy", to be polite!

Lots of love

Heady

[Hidden in reply to Heady]

I certainly do and have been told to contact them direct in future, fingers crossed that works.

Re: teaching the professionals, every time I asked the OT & Physio about something PSP and they said 'I'll have to check that' I knew they were going straight back to 'Google' it, Brian and I had a good giggle! I know exactly what you mean because I seem to know a lot more than they do thanks to the forum!

Lots of love

Lesley

[Kevin_1]

Well I am late to the table here.

Welcome and that sound rough indeed for both of you.

I do hope you will share your advice here as you learn. As well as asking when you are unsure.

This is a supportive place for many of us and a place for tested information.

I hope you find that too.

Warmly

Kevin

[Hidden in reply to Kevin_1]

Maybe last but by no means least Kevin! Thank you for your welcome.

This is a huge learning curve and I feel so lucky to have found this forum with its wealth of information and support, hopefully, in the future I will be able to give a little back.

Best wishes to you and your wife,

Lesley

[Heady in reply to Hidden]

Lesley, you have already given something to the site. We all need as many understanding friends as possible, whilst we are heartbroken for you, that you had to join our gang, another person, who knows, has heard of and understands what PSP means, makes life seem a little bit less lonely.

Lots of love

Heady

[smallshaw]

Hi Lesley I have also gone down the same road as you so I know what you are going through. I was diagnosed about 6 months ago. Where in the U.K.are you from?.

[Hidden in reply to smallshaw]

We are in Lancashire, how about you?

[smallshaw]

Yes, I am just outside Manchester. Perhaps we could keep in touch!!