Deteriorating quickly with psp …is this no... - PSP Association

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Deteriorating quickly with psp …is this normal?

MaggieZink profile image

I have experienced a rapid decline in the past month and was wondering if this has happened to anyone else.

9 Replies

Hi, My husband was diagnosed back in July was still running 5k at the beginning of the year, then started just walking it, until his balance got too bad. He would potter about in the garden until around October, he is now bed ridden and in a home, cant stand let alone walk, he sleeps a lot and is very hard to understand when he speaks he is only 58 years old, I feel broken, we had so many plans for when we retired, each week he gets worse, this is breaking my heart to imagine my fittest husband like this

I really feel for you and your story has similarities to mine as my husband was only 58 when he passed away and he was still running 5k ( we met at parkrun) before he took ill in July 2018 and was in hospital until 17th Dec and passed away on 26th Dec you can read my posts on my profile as it was a rollercoaster of a ride including a wedding. It’s a cruel disease and I feel robbed of the life and retirement that we had planned. I am now trying to do all that we had planned on my own but it’s difficult I will be thinking of you xx

I noticed when my husband would have a really bad headache he would take a rapid decline in his health .I was told when you notice a difference in a month they are getting worse but at the end it becomes a week and then a day .My husband died 23rd April this year after 7 years of knowingly having PSP .Sending much love and strength for your continuing journey together 😘 Jean

Hi there, my Mum only started to fall in 2019, she had no other symptoms, then after a knee replacement, at th e end of 2019, she started many symptoms, she was diagnosed in 2020 in june, with psp showing all the symptoms by the time she passed away in August 2020, very rapid to say the least, I've only heard of one other person on this site that has such a speedy decline, sending best wishes to you xx

Everyone has a different journey with this cruel disease and my husband’s decline was certainly rapid but then there are others on here that are experiencing a very slow decline. Take and sending love and hugs xx

Hi MaggieZink!

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.According to the information I have been able to access, in general the different types of PSP do not present or have mild cognitive dysfunctions, except the type "PSP-FTD-F" (Fronto temporal degeneration) that presents changes in behavior : apathy, rigidity, desinhibition and hyperorality.

Emotional Blunting, Compulsive or Ritualistic Behaviors, Changes in Eating Habits or Diet, Deficits in Executive Function, Agitation, emotional instability, Lack of insight.

Hoping to be useful.

Hug and luck.

Luis

My husband has had PSP 5 - 6 yrs now. It seems he would encounter a significant decline about every 6 mos in first 2 yrs then quarterly and then monthly; usually always following a fall or generalized weakness. He had a severe decline in August of this year in which he stated my legs won't work any longer. At that time he was still using his u step walker with me holding on to him to get around the house.He is semi bedridden....needs assistance to go from the bed to a transport chair and transport chair to lift chair; however is starting to have difficulty in remaining up right in the lift chair. He wants to slide down or lean to one side alot more now and can't get himself upright again. I can no longer get him into a car by myself so he stays in the house mostly.

He will not eat if there is any distraction such as people around or the TV on etc. I cannot even eat next to him as he just watches me and will not eat. He is coughing and choking more as he eats; eats only about 60% of the amount he use to so I supplement with protein drinks. Yet, he continues to lose weight. He can no longer carry on a conversation; just a few words here and there.

He went into Hospice in August which has been of some help to me but will probably have to go to a nursing home soon if decline keeps up which is definitely monthly now.

But to answer your question, yes, it is possible to have a severe decline in one month and then level out for a while or continue to rapidly decline. Everyone seems to decline differently and not at the same pace. Such a terrible disease. God Bless!

My wife was diagnosed with PSP about 2 years ago. At that time we had just retired and were playing golf about 3-4 times a week. That quickly went down to not playing at all to not being able to walk to now sleeping 22 hours a day. On her bad days she is now unable to be understood when she speaks and is in constant pain from her neck and legs. She has been on hospice for 2 months now and is gradually wasting away. In other words, a rapid decline is very possible with this disease. Good luck on your journey and remember that everyone seems to proceed at a different pace and under different conditions.

Dear MaggieZink, in my experience, there were many repeated patterns for my sweetheart of decline, plateau, and some recovery. A sudden advance of the symptoms may not necessarily indicate a sustained rate of decline.

Keeping physically active as much as possible can help. I wonder if you have support available to you? Where are you?

This disease is confusing and frightening, but it’s not hopeless. See Tim’s, daddyt’s, posts.

Love, ec

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