Hi I hope everyone had a good holiday. As everyone knows Rick falls a lot well on December 30 he fell and broke his nose and got five stitches. We went to the hospital and they didn’t do an x-ray but they stitched him up and said yes it was broken. He started yesterday leaning forward again and having a hard time walking. He uses a wheelchair now so when he when he gets up to go to the bathroom he pulls his self up and it’s just really difficult. This morning he fell on his butt while standing trying to go to the bathroom. It just took me a while to get him up he just seems so he’s like he’s really tired and his legs are so weak I just worry that somethings going to happen to him then I can’t be able to help him.
He doesn’t weight but 165 pounds however it’s dead weight because he has to be told how to help me get him up.
He seems to not be able to stand up straight, he bends forward and he can’t seem to really walk or step out when standing to help me get him to the wheelchair.
Is this just progression or something else? Thanks
Hi Penny you poor thing my husband was falling a lot now he doesn’t as he can’t walk at all I transfer him using a Sarah stedy now as he can still weight bear
Do you have a pysio or an OT that maybe can help suggest anything the falls are awful aren’t they
My mom used to fall even with minimum amount of walking at home, on average 3 times a week. Now that she is using a transfer chair and stand assist, that risk is almost gone, I say almost because there are still occasions when she needs to stand or move a few steps and if I’m not careful, the inevitable can still happen.
I’m curious about the bending forward as well, for mom, it was first noticed as something weird by her physical therapist. It was such a subtle change that we didn’t really pay too much attention, then within a few months her posture changed from just standing on tiptoes to almost losing control of her upper body, even when sitting. She now can barely lift her neck up, always has her chin down like she is sleeping.
Therapists said this has something to do with core muscle weaknesses and rigidity.
I used an alarm which sounded when the magnetic connection broke. One side was attached to my husbands clothes and the other to the chair. It had the affect of shocking my husband into stopping and alerting me to the fact he was standing so I had a better chance of preventing a fall. They used them in hospital but I managed to source one online.
I think it is part of the progression. We moved on to the Sarah Stedy as well which stops the falls but also the independence.
I bought a yellow Medline Advantage Magnetic Patient Alarm from Amazon or eBay. If you look at the images in google for Health magnetic alarms you will see there is a wide range. I used to clip the string end on my husbands collar or jersey at the back and hang the alarm on the chair. The magnet on the yellow Medline is stronger than the one he used in the hospital but still worked okay. My husband was very independent and didn't like being helped. The trouble is he went down hill after every major fall so we tried hard to prevent them while still letting him live his life.
According with our experience seems to be just progression,
These are our experiences about hoping to be useful to you:
A serious fall with serious consequences (hospitalization, surgical intervention, strong medication, etc.) as well as a serious illness (pneumonia, severe flu, etc.) are typical situations that can trigger a fatal process. It is not uncommon for the PSP patient to overcome these types of situations - but these situations once overcome are often accompanied by some increase in the PSP symptoms and a decrease in the quality of life.
The non-strictly-medical parameters that the main caregiver must manage:
From 2008 to 2016 my wife has fallen 11 times, some of them serious. From 2008 until the first specific symptoms of PSP in 2012 she showed some instability and suffered two serious falls that nobody related to PSP.
Avoid falls and hits: Learn transfer techniques. Gait belt with handles (cloth loops) to grip, walker, cane, Replace breakables with non-breakable items wherever possible. Make sure there are no tripping hazards (carpets, etc.). Put foam corner guards on any square corners that patient could fall on, like shelves, tables, coffee tables, etc. Adapt the floor, shower, toilet and washbasin as soon as possible.
Use mechanical wheelchairs with seat belt and anti-bedsore cushions (our anti-bedsores cushions: SYSTAM and JAY - Sunrise Medical Ltd). Make suitable changes in the bathroom. Set up handrails on each side of the bed. Make use of an articulated bed. Also use a plastic wheelchair (type ETAC) special for hygiene and shower.
My wife regularly used a wheelchair since June 2016 (abrupt decline four and a half years after the onset of the first symptom and after the hip fracture and the corresponding surgical intervention). The wheelchair is made of aluminum and is foldable, easily transportable in the car trunk (aluminum wheelchair is Ergo Lite 2 from KARMA brand). Weight supported: 70 kilogram.
After each fall episode I have perceived a greater fear of falling which produces greater rigidity and some distrust towards the caregivers.
After hip fracture no more falls but steady progression of PSP symptoms.
Penny, if you invest in a stand assist device, you won't have anymore falls. Lumex makes an affordable one (around $500) that will be a back saver for you and a life saver for your husband. There are more expensive ones available too such as a Sara Steady. There have been many posts on here about them or you can Google stand assist devices to see how they work.
Hi Penny so sorry to hear about the falls, but I agree with everyone who has suggested the stand-sit assist. I got one on Amazon the Lumex 1600 for about $500. It was worth it. Check out Bazooka111’s posts you’ll see photos of Kim’s mom in the Lumex. It has saved us numerous falls especially in the evening when we are tired and Mike is listing right. I don’t have the strength to hold him straight. Mike can no longer do anything himself and his carer comes 6 mornings a week to help him.
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