Sorry I was wondering if anyone on here has done this or can tell me what causes it. Rick doesn’t do it all the time but when he does it’s like he can’t stand up straight. He leans so far down that he will rest his head on the back of the toilet.
Thanks for listening.
Hi Penny, my husband does this, but usually it is backwards or sideways, sometimes does this when walking forward too. When I watch him it is like something is pulling him. He is unaware that it happens until I tell him to sit up/stand up straight. I have to position cushions around him to stop him leaning to the side. The physio says he has a strong back and legs, so this wouldn't account for it.
I tell my husband when this happens to stand up straight too, it doesn’t help because he just can’t do it. It’s weird because it’s not all the time.
My husband doesn't respond either to requests to stand/sit straight. My husband says he is not aware of it happening even when I tell him it is happening in front of my eyes. So much of this illness is an unknown to us and we just struggle to get answers.
My husband would lean, especially while sitting on the couch watching tv. I really don’t think he was aware he was doing it. As for the toilet, once he was seated on it he would sometimes lean forward like he was bent in half.
Really weird, isn't it? Sometimes I am bent right forward 'by mistake, and have to tell myself to stand tall again. Not that the muscles cant do it, because I am still in pretty good shape physically. Gotta be neurological? BTW do you notice how many women with this problem are named 'EILEEN'?🤫 Timbow
My mother is frequently bent over. More when she was walking, but also now sitting. I think it’s part of poor control of her trunk from the disease—sometimes those muscles just can’t work enough (aren’t getting the right signals) to straighten up the body. She also can just stiffly keel over sideways. She has fallen forward off the toilet, and even off the sofa, when she was not supervised.
Loss of core strength..a hallmark of the disease
The freezing in place, or leaning to one side is a daily experience for us. My husband leans far to the left, until he falls off his chair or falls from his walker. I tap him or just gently pull him back to a safer stance. This started about 6 years into PSP, became rapidly worse with falls always on the same side of his body. The falls made it necessary to have hospice on call because I cannot lift him. so far, no broken bones. Lots of repeat bruises on the same left side and so much leg cramping, he gets weak and can't support himself. I try massage, chiropractic, essential oils, tens machine, heat pads, whatever works. It's something new all the time. I have pillows and stiff cushions to hold him in place.
Hi there penny! When I had a tele-med appt. with my sister's neurologist a few months ago , I informed him of her recent and often leaning body position which is typically to one side, not in a relaxed manner either, and all of the abnormal positions of head , neck , arms, etc... that had begun and also have a rigid nature . My sister is 71 yrs old and started having symptoms of PSP over 10 years ago. For at least 6 months she has required full assistance with all activities of daily living and her condition has deteriorated markedly.
Her neurologist explained that the term for what my sister is experiencing is "Dystonia".
Dystonia can have any number of causes . The basis for this in PSP and other neurological disorders / damage is that there is a problem in the area of the brain that is responsible for initiating muscle contractions . "The problem involves the way the nerve cells communicate." When we all learned of the buildup of Tau proteins in the brain and the "Progressive" damage that this causes , it's no surprise that Progressive Supranuclear Palsy dystonia in one form or another may come into the picture. Parkinson's disease has it's own forms of dystonia .
As someone posted, the PSP sufferer does not have control over their muscle movements and has not made the decision to adopt these awkward positions. Example :There has been a signal from the brain to contract certain muscles , but the signals to relax them have been interrupted. There's progressive neurological damage that has been occurring . We can apply that info to what happens with this illness in general. Tau proteins proliferate in the brain to the point where they destroy neurons and we depend on neural integrity for our functioning.
My personal take on this illness and the many other neuro illnesses , is that they are among the most devastating illnesses of all , for patients and the people who love and care for them ! And to date, there are still no effective treatments .
Hopefully someday in the future there will be interventions so that people can be treated and recover . That will be a great day !!
psp - how bad can the leaning get?
Leaning to one side 
My husband has started leaning/falling to the left. Is this a common progression? Apart from one dramatic forward dive downstairs, until 
