walking: my husband wwas diagnoised in june... - PSP Association

PSP Association

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my husband wwas diagnoised in june 2012 with cbd/psp He is supposed to be middle to end stages and is deterioting rapidly he is now unable to walk he was in hospital last week with a i t u infection was sent home after 2 days with oral anobotics we had to call dr again on saturday night he was given more antobotics he seems to be very weak and no talking i am wondering if he will get walk back again has anyone experienced this he is supossed to be at middle to end stages would be gratefull for any sugestions judy

6 Replies

Staging PSP (and CBD) is often difficult due to the fact that many areas of the brain are affected in different degrees and different ways, and varies from one person to another. Generally speaking, if your husband is unable to walk and has begun to contract infections, he may be well into what some call the middle stage. I think all carers would like to know what stage their loved one has reached so they can plan effectively for future needs. However, it not so simple. It's the complications that occur with PSP that eventually determines how a person progresses towards what is often called the end stage.

It's been said PSP has a slow progression downwards until a point comes when a sharp decline occurs. Others have noted that there is moderate decline until something happens (like a bad fall or infection) and then there is a quick decline stepwise, but then it can level out again until the next crisis and there is another quick decline. So it goes in a step-wise fashion, until the end stage comes (and even this can be different lengths of time).

I do wish you all the best with your caring and know you have a forum like this to share your concerns.

larches in reply to Hidden

Thank you very much for your reply as i am finding it very difficult watching the rapid deteriation his voice is so weak and he does not talk as he can no longer walk that has been a complete shock to me it all seems to be happening so quickly i have help morning and evening but sped all my time with him thanks again for your reply judy

Dear Larches, this is how mum started to get, repeated infections and a sudden downhill decline once she stopped walking. We got her onto prophylactic antibiotics so that she didn't suffer -it does't stop the infoections but kind of muffles the effects so that they are not too poorly when they recur. I also likened it to going down steps but every now and then there is a missing plank equal to an infection so that makes them go down a little faster. The end stage for mum involved really laborious swallowing and speaking was down to a minimum-a sentence a day if we were lucky, but mostly yes, no, a slight head movement for no or a blink for yes. Her skin was breaking down easily.The swallowing became so hard that medication was impossible until we got liquid forms of everything and pain relief patches and that was basically the last week. Stepping back from it afterwards I can see she was clearly on end stage for the last 6 weeks of her life but at the time we weren't entirely sure as she has pulled back from the brink about 3 times before. She even suddenly had one day in the middle of all that when she could suddenly talk all day but then never spoke again. I can only say that the palliative care team should be involved asap as they can advise you and the palliative care nurse was the best thing for me in all the darkness of the end stage as she really knew what to do and say to help us through.Your Parkinson's nurse can arrange a meeting for you for assessment.

All the best and hugs to you both


larches in reply to daughterno1

Thank you very much for your advise it is nice to be able to hear from someone who has had the experience i think it will help to keep strong many thanks judy

My dad was still walking with assistance last month, he too is in the end stage of psp. In the last month he has gone from some talking, walking with assistance, sitting in his recliner chair and napping to sleeping most of the day in his bed, doesn't walk anymore, doesn't talk and eats very little. I've heard that it can move faster in the last stage. We have called in hospice for help. He is still at home here. Many blessings to you and your family.

many thanks

its good to hear how other carers are coping its not easy being in the house 24/7

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