First timer here: I was wondering at my last... - PSP Association

PSP Association

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First timer here

OleJoel profile image
15 Replies

I was wondering at my last visit to the neruology ALS clinic why I couldn't focus back and forth from my computer screen to the computer keyboard. I was told that in addition to PLS I had PSP. This was pretty discouraging news because my sight has been becoming blurry for a while now and it isn't getting better. I use u\eye drops all day long and that doesn't help at all. Any tips out there?

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OleJoel profile image
OleJoel
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15 Replies
raincitygirl profile image
raincitygirl

Hello Olejoel and Welcome! ...although I'm sorry you have way more than your share of challenges that brought you here :-/

My husband didn't have eyesight problems as part of the disease, but while you're waiting for more knowledgable members to respond, try the search function (search window is in the upper right of the screen) Depending on how you type the question, you'll come up with over 7 years of members' posts on this and many subjects.

Best of luck to you, and welcome again XX

Anne G.

OleJoel profile image
OleJoel in reply to raincitygirl

Flank you

OleJoel profile image
OleJoel in reply to OleJoel

I don't even know what flank you means. I meant to write Thank You.

Kevin_1 profile image
Kevin_1

Hi OleJoel

Welcome to the forum.

I'm so sorry you are suffering with this damned illness.

Was that the ALS Clinic in Miami? Quite a centre of excellence.

I don't know much about PLS except it is more benign than ALS.

PSP certainly does start to affect eye sight. The eye movements slow down. This is called slow saccades. So changing from looking at one thing and then another (screen / keyboard) becomes more difficult. Focussing too can deteriorate. Early on a good optician can help with prescribing lenses to help with eyesight. Try to get one with some knowledge of PSP or neurological disorders.

I hope this helps a little.

Best to you

Kevin

OleJoel profile image
OleJoel in reply to Kevin_1

Thank you

OleJoel profile image
OleJoel in reply to Kevin_1

Thank you!

You might want to try an eye ointment at night. It helps protect the corneas. While sleeping you probably aren’t keeping your eyes fully closed. The corneas dry out. The ointment is 97% petroleum jelly and 3% mineral oil. I use this on Larry every night. In the morning I use a liquid eye gel to help lubricate his eyes during the day.

OleJoel profile image
OleJoel in reply to

Thank you I will check oiut tjhe oint,emt

OleJoel profile image
OleJoel in reply to

Thank you!

stephanotis profile image
stephanotis

Hi Olejoel,

As the disease progressing, my late husband couldn't use the computer but could use iPad instead. Maybe you can try that too ?

OleJoel profile image
OleJoel in reply to stephanotis

Thank you!

Skye04 profile image
Skye04

What is PLS ?

OleJoel profile image
OleJoel in reply to Skye04

Primary Lateral Sclerosis. In the Lou Gehrig’s disease family affecting the upper motor neurons and not both. Not as severe but affects a person a lot like PSP.

Skye04 profile image
Skye04 in reply to OleJoel

Thank you Olejoel..My husband has been diagnosed with 'Motor Neuron Disease' but have not identified exactly which one..They did group him into an ALS group but he has not developed any other symptoms other than balance issues over the past 4 - 5 years so they have never said he 'does' have ALS so I just wondered what PLS was...thanks for your reply...

OleJoel profile image
OleJoel

It is a lot like PSP however somewhat different. Here is a link to NIH information page on the disease. I was diagonosed with this disease about two year ago and just last week they told me i also have PSP. I am now waiting for an answer from the nerurolgists I have been seeing regularly since 2015 if they added PSP to my PLS OR IF THEY HAVE CHANGED MY DIAGNOSIS.

ninds.nih.gov/Disorders/All...

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