Hi, first post.
My mother in law was diagnosed about 3 years ago, the last week she got a stomach bug and since then she has got much much worse, awareness has dropped off, more falls, struggles to feed herself and dress etc. Her progress has been quite consistent up until now. Can anyone tell me if they have had a similar experience?
Thanks
Lee
sorry I can't help, but I'm sure somone will be along who can
Thanks Lizzy, we’re in a tough spot at the moment, the deterioration has been very gradual for the last few years, we have watched her almost, slowly drift away, but the last week or so has been shocking deterioration, not looking at her plate when eating, trying to eat from an empty fork, hardly any communication. It’s just horrible.
Was she on medication for the stomach bug? Has anything else changed regarding medication? It could be that she is just trying to recover and she’ll need extra rest to get back to her usual self. My husband goes through stages and he’ll have a few bad days after an ailment. Fortunately he’s been able to snap out of it and he returns to the old version of his normal. I hope this is the case with your MIL.
❤️from I SewBears
Hi,
No medication that I know of, the change has been so severe. She is still in hospital where they are giving potassium for a deficiency,and doing CT scans. Her mobility is poor anyway, she can’t walk without a frame and it takes 2 hours to eat breakfast. 2 falls in the last 2 days that have resulted in being unconscious. 😞
In March of 2015 I got sick. It put me in bed for three days which isn’t me. Then Larry got it. It put him in bed for two weeks. He was never the same afterwards.
Welcome to the site. It is quite possible the illness caused a sudden drop in her condition. She may regain her previous baseline or near it as she fully recovers, this could take days/weeks.
Don't be alarmed if she does not bounce back to where she was. Dad's progression was like going down stairs, stable for a while then almost overnight something would decline.
These diseases are Neuro destructive, once enough cells in a given area are damaged the function that area of brain controls will be limited if not gone.
I haven't used this analogy in a long while. Think of the brain as a bread toaster. You put bread in, it's plugged into the outlet and has power but the power never makes to the part of toaster to actually toast the bread so nothing gets done.
Ron
If my husband gets a urine infection it really sets him back but he generally bounces back sometimes he gets dehydrated and his balance is very bad so hang in there she could bounce back get lots of fluids in her
Good luck hugs to you xx
Hi LeeW75!
I'm sorry PSP has entered your family.
The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.
This disease manifests itself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.
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:
I am not a phisicyan. During the 7.5 years in which we are living with PSP, I have been collecting information on the PSP stages as well as solutions and experiences for the different symptoms that may appear based on our own experiences and those of other chat members to offer everything as a suggestion to PSP patients and caregivers. The information is done with good will and with the best technical criteria that I can provide, especially thinking of the support of caregivers.
Wishing the best for you and your family and if the document with our experiences and our solutions can be useful, do not hesitate to let me know to send it by private mail through this chat.
Hug and luck.
Luis
Thank you all, this is all really helpful. It breaks our heart to see the lady that she once was slowly drift away. Communities like this are invaluable, and I thank each of you for sharing your knowledge and time.
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