What are the things that you find necessary and helpful for PSP patients

[sunflower2412]

Hello everyone,

I hope you and your beloved ones are doing well.

My father was diagnosed two years ago with PSP disorder. He kept a steady course during the last two years with a relatively slow progress and was even able to take the stairs on his own until last week when he traveled to visit his sister. In one week everything changed: he isn't able to stand up on his own, can't make it on time to the toilet, always looks down and the speech difficulty has increased. Is it maybe because he is away from home and in a new environment? will he get back to "normal" when he goes back home?

Thank you for any information.

sincerely,

A

[Zerachiel]

Hi, I noticed that you said he is looking down, my wife does this and it is the first time I have come across someone else with PSP that does this; most people seem to have a rigid neck looking up.

Regarding your question I would check that any medication he is on is still being taken and in the same quantities as before he went away; there sometimes is a fine line between it being helpful and causing more issues, especially with bladder control.

I have also noticed with my wife that she can have a few days where she seems to get worse but does get back to normal.

Best wishes x

[sunflower2412 in reply to Zerachiel]

Hello Zerachiel, thank you for your response. I hope you and your wife are holding up well.

I always try to remind my father to look up or fix the way he is going to take when we go out walking and sometimes it works.

This disease is very emotionally draining as we see our loved ones slowly become dependent in their every move.

I wish everyone dealing with this a lot of strength and patience.

[Hidden]

My husband has PSP he also looks down a lot. I can tell his vision is getting worse. It’s almost like he can’t see me at times. His walking and movement is getting so much worse. He can’t hold on to things. I dress him. He gets tired so easy. This is such a horrid disease. I feel so sorry for anyone having to deal with this. It totally changes your life. He also keeps a runny nose. And his eyes constantly water. It wears him out dealing with that. His neck is constantly hurting. He doesn’t complain tho. I just see him trying to move around. And ask him. , then he’ll tell me. He’s not a complainer whatsoever. He’s easily contented , but gets so tired of sitting. He has a rollator. The only way he can go at all. And that is not good. I make every step with him. He falls constantly if I don’t stay right with him. Prayers for you and your loved one. It sure takes a lot of patience and longsuffering. ♥️

[sunflower2412 in reply to Hidden]

Hello Laurel,

thank your for your response.

My father says that maybe looking down was a consequence of the first physiotherapie he had. The therapist used to put books on the floor as "obstacles" and ask him to walk over them. Even a healthy person looks down during this exercice. And with the regidity in the muscles and neck, he is now unable to walk straight because he can only see where he walks and it takes him a lot of effort to look up everytime. Our loved ones dealing with this are so strong because they are aware of the progression of the disease and it breas my heart.

I wish you and your husband a lot of strength and support. Get all the help you could and be strong. May everyone struggling with this find comfort, love and peace during these tough times.

kind regards,

[DoingwhatIcan]

Hi there… my dad always looks down - I thought it was one of the main symptoms of PSP?

[AJK2001]

Because eye movements get restricted with PSP, people have to move their heads to see, hence the looking down to see where he's going. You could get this checked out by an orthoptist but it's not something that can be cured. My Mum also suffered from double vision which was because the eyes moved at different speeds, so were looking at slightly different things, which was very disorientating.If it's been a sudden downturn, might be worth getting a urine sample tested for infection - this can lead to all sorts of issues, which you wouldn't expect.

I found Mum used to have a few days where she became very bent over and low energy, then she would perk up again - such an odd and horrible condition.

Fingers crossed your Dad perks up. xxx

[Dosco]

PSP cannot be cured or treated. My wife has PSP and is confined to a wheelchair. Since her diagnosis, we have worked to slow the progression through exercise. She has a one-hour per week weight and cardiovascular session with a trainer. This training involves the treadmill as well. The intent is to maintain muscle, heart health and importantly the connection between the brain and body. Twice a week she goes for a 30 min "walk" with assistance and does other training for eye/hand training.Her speech is impeded due to the paralysis of the tongue and the jaw. We are working with a speech-language pathologist to improve her speech using vocal exercises, opening of the jaw and other aids such as coon phrases laminated on a sheet of paper that she can point to.

I hope this helps.

[LostinHeadSpace]

A, Sometimes a person has a huge downturn from something like a UTI--that happens with my husband. It's such good news when it's something "fixable" and not just progression of the disease. Not saying this is what is happening with your father, but at least it holds out hope when such "small" infections can have such effects on people with Parkinsonism.-Lost

[Martina_MP]

If he isn’t sleeping as well, or if there was a time zone change, that could certainly affect his function. Sometimes people do go through phases where they are suddenly worse and then bounce back for a while. It is not always a steady downhill course but a rollercoaster with an overall downhill trend. People with dementia do get discombobulated in a new environment. But it might be good to test him for COVID just in case he picked it up traveling, and get him a checkup when he gets back home, to look for any precipitating factors, such as a UTI or other infection.

[bichonbear1]

Hi, my mum has CBD and when she contracted Covid she deteriorated quickly and significantly. Also, as people on here have suggested, a UTI can cause issues too. One of the biggest things I have learnt is the impact of a UTI, definitely check and get tested as soon as possible. These diseases do seem to have the habit of sudden downturn, plateau, sudden downturn etc (that’s our experience). Infections don’t help with this, worth ruling out.