A question to the experienced.

[JCRy]

I am a little confused. As some may know, Ian was diagnosed with PSP a couple of weeks ago, having been diagnosed with secondary Parkinson's 4 years previously. This, we were told, was triggered by medication given to him 3 years earlier for acute tinnitus.

My question is, is it possible for those with PSP to have just mobility problems in the early stage? Ian's eyes are fine, as is his voice and mood, or at least no different to the way he has been for years with his other health issues. His mobility is not good, walking only with a stick or walker and struggling with chairs, and stairs are almost impossible.

I don't question his diagnosis, which placed him on the second stage of his illness. Just curious.

Thanks, Juliet

[Tippyleaf]

Dear Juliet

The one thing I have learnt about PSP since my husband’s diagnosis in 2013 is that is unpredictable and no two cases progress in the same way!

He started with personality changes and knocking wingmirrors off the car ( in hindsight eye changes) followed by a change in gait.

Love Tippy

[JCRy in reply to Tippyleaf]

Thanks, Tippy.

[steph-02]

Hi there i hare been diagnosed with psp about 4 years ago ago

previously having atypical parkinsonism for 6 years before, at the moment I am well although I fall about three times a day these are just stumbles and controlled I have about one uncontrolled falls a week which usually results in a black eye or a small cut on the face but apart from these falls I feel quite well and independent.

You see everyone is different and nobody can predict the course of the terrible disease.

[JCRy in reply to steph-02]

Thanks, Steph. I guess no one knows what to expect. Sorry to hear about your issues, but I am encouraged that you have been able to remain independent for so long.x

[raincitygirl in reply to steph-02]

Welcome to this site Steph

Great to have patients join us and share their direct experience - Thank you!

10 years, mobile and still communicating: thumbs up!

Anne G.

[raincitygirl in reply to steph-02]

Ah-HA! Your new avatar fooled me! Are you the same Steph who joined in 2013 or earlier? If so, you are an old hand at this site and just have a new id?

I was reading your last post some months ago, about concern over your spouse's state of mind being your carer...If I'm right, and that's you, how has that gone this year? Any better?

Anne G.

[steph-02 in reply to raincitygirl]

yes you a right unfortunately I cant get my old login to work .

[TRICE268]

Hello there,

Being a carer for my uncle who had psp , the early stages with Tom, was mobility issues. He would be stiff, his walk got stiffer like Ian he was aid supported. I started to do leg excrises while Tom was sitting on the chair, got him a excrises bike through the HSE here in Ireland, it was a huge help to Tom and he got a good year and a half with good mobility

But with psp everyone pregession to the disease is different.

What I would recommend from my own experience is to do leg work outs with Ian while he is sitting. Eg flexion from the knee, marching up and down, touching floor with toe and heel. To name just a few. Hope this helps x

From

Patrice

[JCRy in reply to TRICE268]

Thanks, Patrice. He has been doing exercises for a couple of years now, and I'm sure that has helped.

Appreciate your confirmation!

Love, Juliet

[Marie_14]

Juliet

My husband started with mobility issues only. Apart from that he seemed fine. Of course he wasn't, he had to get a walking stick when I became concerned about his walking. It wasn't long before he had to use a walker because he fell down the last three steps on the stairs breaking the bones in his right arm! I didn't see it happen so not sure exactly what happened but he went downhill afterwards. That's when the walker arrived. So yes it is perfectly possible. With PSP anything is possible it seems to me.

Marie x

[JCRy in reply to Marie_14]

Thanks, Marie. Fortunately we live in a villa, so not many steps to encounter at home, thank God. It must be so hard manoeuvring stairs every day.

We were given a walker by the hospital here some time ago, but Ian didn't like to use it as it was so low! Last week's we took it to a metallico in the nearby town (We live on a mountaintop in the middle of the countryside in southern Spain ), and he extended it brilliantly while we waited. Only took 15 minutes and 20 euros. People are so kind here.

[raincitygirl in reply to JCRy]

Sounds wonderful...I visited Andalusia once...Heavenly!.

[JCRy in reply to raincitygirl]

I'd post a photo if I knew how!

[raincitygirl in reply to JCRy]

Hi Juliet,

When you open up a New Post dialogue entry screen, there's a little box on the lower left of that screen that says Add Photo. At least there is when I use map laptop - I don't know where it is when I use my phone....

[JCRy in reply to raincitygirl]

photos.app.goo.gl/UGo4TaDnq...

Does that work? Hope you don't mind me experimenting!

[Hidden in reply to JCRy]

I've just jumped in on this thread. What a gorgeous place you have!

x

[raincitygirl in reply to Hidden]

Yes - what a view!

[Kevin_1 in reply to JCRy]

Juliet!

WOW - Some like it hot!

That is a beautiful even iconic place you have.

You have had many good replies here. For my Liz it was weakness in the legs at first and falls.

The thing to watch is driving. Liz's ability to use the clutch went fairly early. However we went for a drive to try to fix that and I realised that she was a little mentally slowed. So there was too big a delay between deciding to pull out at junctions and roundabouts. She stopped driving then. She was not aware of the problem.

Warmly

Kevin

[JCRy in reply to Kevin_1]

Ian hasn't driven for a few years now. Three years ago he nearly died with a violent reaction to toxins. When he survived, I was told he'd be bed bound. He proved everyone wrong and fought back. He has to walk with support now, but driving is a risk too far. Because of this complicated history, his mobility has been so much worse than it is now, so in part we know what to expect. In part.

Thanks for your kind words, again.

And yes, it does get hot! The mountain breezes help, especially in July and August. Not so much in the winter though! We have lost the side of our roof twice. Ah, the joys of pioneer living!

Juliet

[Kevin_1 in reply to JCRy]

Gosh Juliet

You've both been through the mill on all of this.

Strength to you both for your pioneering ways.

I wish you both all of the joys still to come.

Warmly

Kevin

[Hidden]

Thinking back Larry’s earliest symptom was dropping food on himself at dinner every night. His first major fall was in 2011. I figured he was clumsy. Not until 2013 did his relatives tell him his speech was slurred. I hadn’t noticed as we mumble at each other as a rule. He started to see a neurologist in 2013. He didn’t get a PSP diagnosis until May 2015. Now I would say he’s in the middle period of this disease. He’s still in pretty good shape. For how long I have no idea. As has been said above there is no knowing. Each case is unique.

[JCRy in reply to Hidden]

Thanks. It does seem no one has the same problems. Ian has so many other health complications that we are never sure what the source of his problems are! Not that it would make much difference to the dealing with it!

[Sayer]

My wife started with mobility issues. In house I installed 'wall bars'. Later she used a walker.

Later still we had to use a wheel chair for indoor and out door movement.

Be watchful. A characteristic of PSP is falling backwards. Walkers will not prevent this.

Make sure slippers and shoes have backs. Move carpets if need be.

If you have glass panes in doors be extra careful. Falls into them can result in nasty wounds.

Sorry, for you situation but PSP is a real pisser!

Ivan

[aliciamq in reply to Sayer]

I had to place plexiglass panels to cover the glass in a couple of windows! Good advice to new folks.