Leaning to one side

[jabberwocky45]

Early into PSP. Is leaning to one side a symptom? And how does everyone cope with not being able to see looking down? Any ideas please thank? All so new. Having few days break Dorset way. Seemed to be really bright.

Thank you

[Hidden]

Leaning to one side seems to show up in a lot of people. The thing about this disease is no two people will exhibit the same symptoms.

[Satt2015]

Hi Jabberwocky

Sadly my dad did this near the beginning

All I will say is enjoy Dorset and make the most of every day and every memory x

[Dadshelper]

Dad leaned to one side also, I'd straighten him up and he'd lean back over. He never really had eye issues but then he was CBD not PSP.

Ron

[easterncedar]

Leaning was a problem that came and went. My guy was given a custom wheelchair with what they called a "moustache" neck support, which was a curved wing deal meant to keep his head up and straight. I don't know that It helped much. He was prescribed prism lenses to help with the fixed vision. Again, not obviously terribly helpful for him, although many folks say good things about them. I think so much of his vision problems came from his inability to mentally process the information his eyes were giving him. What confused things a great deal was his heightened abilities in the presence of doctors of every kind. He could see those eye charts perfectly! That his eyes couldn't track back and forth made reading impossible very early on, which was a terrible loss. Nothing helped that.

Everyone progresses differently, depending on the areas damaged and, to some extent, the physical and mental strengths to begin with. It's very hard to accept not knowing what will happen. Wishing you the best,

Ec

[Christine47]

My husband has right side ataxia, so he does exercises to strengthen his core muscles. To keep him straight as he sits, I have a round pillow I tuck on this right side. That also helps. To reiterate what others have said, each person is different in the progression and that progression is not a straight line. Some days are diamonds, some days are stone...

[honjen43]

My hubby, diagnosed with CBD, had a lean to the left. It appeared suddenly when we were walking to a restaurant. He straightened up when I told him, otherwise he seemed to be totally unaware of it.

A year or so prior to that, he had strained his back lifting a case into the car boot. Then had increasingly painful muscle spasms that nobody seemed to be able to fix. No helpful while on long distance travel!

Left side continued to be weaker until muscle or muscle control gave out completely.

Enjoy your holiday in Dorset!

Hugs

Jen xxx

[racinlady]

From early on, my husband leaned to the left. That was also his dominant side and the first to lose motion and first to contract. He did that until the end. He just passed away on the 17th of May.

Pat

[Inparadise]

My husband has trouble looking down. This is particularly dangerous when he is going down stairs. I always am in front of him when he is descending stairs, and behind him when ascending. The problem is that they are unaware of where their feet are, which causes the problem. And according to my husband’s PT, they shouldn’t be looking down, but looking at a fixed point ahead of them. Trust me, this really helps.

[Dickenson2]

John leans to the right on bad days and he can very rarely sit straight even placing cushions beside him does not help.

[Tippyleaf]

My hubby had Prism glasses -called ‘easy readers ‘ for people who want/need to lie flat in bed and read. These glasses helped hugely with eating and maintained his independence in feeding himself considerably longer than would have otherwise been possible.

Glasses about £5 from

Amazon or from PSPA . May be worth a try.

Love Tippy

[jabberwocky45 in reply to Tippyleaf]

That sounds good. Will try. Thanks.

[AJK2001]

Mum intermittently becomes "boomerang shaped", normally to the left, sometimes to the right. May last a day or two then she straightens again. Physio has given us "core" exercises to see if it helps.

With regard not being able to look down, we have put blue tape on all the door posts and doors at eye level, so Mum can judge the gaps without looking down. Eating she used a plate with a rim, which helped her load her spoon, but was a real struggle still, she's now fed as she just wasn't eating enough. She tried the prism glasses the PSPA sent but didn't get on with them. She can't read so she gets the local listening newspaper, we tried listening books (RNIB in UK has a good selection) but she can't concentrate sufficiently to follow.

Good luck

[AliBee1]

Hi. Only got a few minutes as my husband is in hospital but if you are holidaying down Dorset way do you live near enough to get to Southampton. Although we live in Somerset my husband who has CBD, and a friend who has PSP, are both seen by a superbe neurologist in Southampton who is specialising in the 2 conditions. More details if info any good for you. Love AliBee x

[rriddle]

Because PSP is an asymmetric disorder (one side is typically affected first), leaning can be a problem. In a chair, it can be helpful to use pillows to prop up the person. When walking, a gait belt can be helpful.

As far as the issue of not being able to see down, of course this is a dangerous aspect of PSP. When walking, I think it's best to be accompanied by someone using a gait belt. When eating, you can try putting the plate of food on a stack of phone books (or something similar). When watching TV, consider placing the TV up high on a dresser or on the wall.

Robin R.

[Gambee19 in reply to rriddle]

The strange part of my PSP is I can look down but my vertical upward glance is severely limited...crazy disease😳🥰💕💕💕