Hi All
My husband with CBD would occasionally when very tired lean toward the right, usually at the end of the day. Normally the next day he would be ok. The last few days he's had a constant lean. More severe when tired. He says there is no pain & he doesn't realise he's doing it.
Has anyone have this happen then come good? Or is this possibly a decline?
Any advice or experiences would be appreciated.
Thanks
Kerry
Hi Kerry
My dad has done this for years
I think it’s another horror of PSP and CBD
X
Sorry to say it is probably loss of spatial awareness. My wife in the early days did lean to the right but she was worse when she sat down she couldn't sit straight in a chair. Her body faced to the left but her head would be facing forwards.
Dear Kerry. My husband has CBD and used to lean to the right when he was tired or had an infection but now it seems to be most of the time. I recently asked our neurologist about something else by email and received this reply:
'Has he had some physiotherapy with regards to his mobility recently? Does he have appropriate walking aids ? Does he need a review with regards to seating, in relation to his lack of postural control and falling/leaning to the right?'
Nigel has not had any physio recently so I am going to chase that up. Not sure if anything can be done but worth a try. I do not know if your husband uses any walking aids or not but Nigel has a zimmer frame round the house but I now walk behind him holding the back of his trousers to support his right side.
Maybe you could seek some physiotherapy input.
Sorry that I cannot be of more help.
Love AliBee xx
Hi Kerry, this was the first abnormal symptom I noted in my husband in 2014. He had pain and weakness in his back which had become chronic for a year before this. Normal physio treatment for pain was not effective, although gentle massage seemed to be.
In 2014, we were on holiday and walked to a restaurant for dinner. Hubby did not seem to realise he was leaning to one side while walking along the road. When I mentioned it, he seemed able to straighten and I do not remember noticing it happen again as dramatically.
However 2 years later after he was admitted to hospital when his back muscles seemed to suddenly stop working, he would lean to the weak side while sitting in the chair and had to be propped up with a pillow.
We were only given a diagnosis of CBD after insisting on a neurological consultation. Other gerontologists were happy to stick with Parkinsons disease.
I believe this is part of CBD. I guess it must be caused by damage to nerve control from the brain that controls these functions. As affected nerve function is reduced, so symptoms arise. So, yes, I would guess this could be a progression.
I found the only way to manage these new symptoms was to keep ahead in managing and asking for help, service, aids, before they became essential. I found that my husband did not feel these extra aids were necessary at the time I put in the request, but that by the time the request had gone through the process and activation, they were needed. Three weeks before he went into hospital, I had asked for showering care. He was admitted to hospital before he was assessed, and if he had remained at home it would have been necessary as I could not lift him on my own.
My thoughts are with you both. I know how hard it can be to keep abreast of the progression at times. Write down anything and everything you think might be relevant so that you can judge the rate of decline. It is not always as fast as ours was. This diary may also help when you need to consult your professional.
Big hug
Jen xxx
Larry does this the more tired he is. Occasionally he change the side he pulls to. One more thing I have to anticipate when moving him. Only advice is don’t assume it will always be to the right.
Thanks
Dad had CBD and he leaned to one side quite often. Like you husband he didn't realize he was doing it.
Ron
Ruth's right hand side is much weaker now and her right eyesight is poor. Her right foot is turned in - again one of the earlier symptoms. I believe that this is the principal difference between CBD and PSP - CBD affects one side of the body particularly.
Richard x
Mum with PSP leans to tight also, we just have to prop up with more pillows. X
I'm sorry it's a decline keep him talking my greatest asset was writing everything down
Hello.
My husband, in his 12th year of CBD, developed a pronounced tilt of his head to the left. Muscles have contracted and won't release tension, so he is always off-center, and his head and neck hurt by mid-afternoon. Lots of physical therapy, which helps him at the time, but an hour after we leave PT, he is back to where he was. Neurologist sees this as part of the decline and I agree with that assessment. Neck muscles just in front of the cervical vertebra have also contracted and his head droops forward now, at a 90-degree angle to his shoulders. His legs are pretty good but this head droop has dramatically limited his mobility because he cannot see where he is walking. Sad for him. Sad for so many. I hope your husband's change is not permanent.
Marilyn
Hi Kerry
My mum (CBD) also does this leaning to the right. Not all the time, mainly when she's tired. I just keep propping her up with cushions I did ask her consultant about it when I first noticed it. He did mumble something but I never got a proper answer. No surprise there.
Lynda x
My Mum does this at times and the side does alter. Like you each time I worry it's a permanent change but luckily so far it lasts a few days and she straightens out again. She lacks core strength theses days so is very wobbly in the middle and we have invested in some bike pedals and she does 1 minute on legs & 30secs on arms to try and build up these core muscles a little,. We try to do most days but some days she is just too tired.
I would definitely get a physio to see your hubby and whether this type of exercise may help.
Hugs
A
My husband also used to lean to one side. It looked so uncomfortable and painful but he never complained of pain when this happened.It too was when he was tired.Eventually it took a lot of effort for him to walk until he declined even more, had a bad fall and then had to have a wheelchair.
Dx
Leaning to right
Moaning noises
Wheelchairs can be good things!
