Battle of Corticobasal : Good day… I read... - PSP Association

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Battle of Corticobasal

Hionarock1
Hionarock1

Good day… I read with heartache about your 11 year battle with CBD… Is your husband able to speak…? Is his speech drastically affected? Is he able to move out of bed into wheelchair with your assistance or do you use a lift… My wife was diagnosed five years ago and is reaching a point where it’s very difficult for her to move from the bed into the wheelchair with my assistance… Spends most of her day in a recliner… Thank you Lord for recliner’s … She has recently started medical cannabis and also takes time release Dilaudid as well as diazepam for tremors.... The staff at the local pain clinic have been most helpful but the disease is progressing ...Thank you for sharing any tips that you might have to make the patient more comfortable .… Hionarock

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My husband is a 2 person assist, even with a young strong son helping me. A few months ago we started using a “sit and stand “ stand Aid. He is declined enough that me have an electric one. There are many different varieties of Manuel ones that are not too exspensive and wonderful. Dan used one in the hospital . We wheeled it up to him, put his feet on the platform, he grabbed the side bars, we helped him to stand, and the seat snapped underneath his bum to help support him . Then you swing him over the chair and sit him down. I wish we would of invested in one long ago. It would have prevented a lot of falls.

Are you having difficultly due to her becoming more stiff and rigid? Dad was Dx with CBD and eventually had to resort to a mechanical lift device. In the US we call it a hoyer lift, pretty sure there are other names for it. I used it solo to move dad from bed to recliner/wheelchair for quite a while. Now he is in a nursing home and in bed all the time unfortunately.

Ron

Thank you… My wife is unable to walk and has no balance… The Hoyer lift takes up more space than we have to work with… Thank you for sharing what work for you good thoughts Hionarock1

Another type of lift is a ceiling mounted track system. It's very similar to a Hoyer in operation but runs off tracks/rails mounted to the ceiling. It can be set up to access multiple areas of the house. I've never priced one but I can only guess it's not something most people can afford.

Ron

Hi. Agree 100% on recliners! They are as valuable as any other resource we have...12 years into CBD.

Marilyn

My husband diagnosed around 11 years ago with CBD has progressed to the point where basically yes and no are our only way of communication. Although he is still very much able to understand, at night he has periods of dementia where he has yelled out quite a bit. Our neurologist recommended the cbd oil after trying multiple other drugs that would hinder him from doing anything and make him more frustrated. We walk with him by holding his hands having him “engage” so there is no pulling of his arms. We use a gate belt and someone close by to make sure he doesn’t fall. He hasn’t fallen in a couple of years, thanks be to God. Falling is the worst. So prevention of falls is of utmost importance. We use Keppra 3times a day to control tremors and music. He loves music

My husband with CBD needs help to stand but walks with assistance in the front and a person in the back just in case he might fall. We hold onto his hands but don’t pull him or his shoulders. Every little thing he can do to engage his muscles help. We have trained numerous people to help him coontinuecto walk( slow but steady) to the bathroom. He has trouble communicating but can say yes and no sometimes and communicates with his beautiful eyes. He struggles with dementia a night and out neurologist suggested small amount of cbd oil. Which seems to calm him. He is on Keppra 3 times a day to stay ahead of tremors and seizures. He loves music! We have kept his routine pretty stable and it really helps to have CNA’s who really care. My children encourage him. Although, I can see the disease progressing slowly. Right now we are dealing with a cough. Important to keep his mouth cleaned out so he doesn’t choke. My husband is super sensitive to pain medications and would turn him into a zombie. Then he wouldn’t walk, which for him is crucial. He also has osteoporosis

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