Theses past few daysI have noticed a steep decline in some of my husband’s abilities. He seems, for lack of a better description, to be in a fog. He repeats himself and others. His ability to walk, as poor as it was, is now bordering on complete collapse. He appears to struggle to see although he says that is not the case. I know his depth perception is gone. Have any of you surviving spouses or victims of this disease experienced anything like this? Is this the beginning of the end? His choking is getting worse but is only on his own saliva. Regular food and drink do not seem to cause significant choking. He is more often becoming agitated when he cannot do what he needs to do or is asked to do. Any insights?
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Indiana-Girl
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Hi Indiana-Girl!I'm sorry PSP/CBD/ etc. 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.
These kind of diseases manifests theyself 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.
I am not a phisicyan.
During the 8,5 years in which we ere living with PSP I have been collecting our own experiences, symptoms and solutions and that of other members of the chat to offer some notes as a suggestion to PSP/CBD patients and caregivers. The mentioned notes are made with good will and with the best technical criteria that I could contribute, thinking above all in the support of the caregivers
Wishing the best for you and your family I am sending our notes-document with our experiences and our informations by the private mail of this chat,hoping and wishing to be useful to you.
Hi Luis,I am new to the site. My mum has PSP, was diagnosed 4 years ago. I have been reading posts and learning how differently PSP can affect people. Would you mind sending me your notes to learn more from your experiences please?
Hi Indiana GirlOur experience is that symptoms change from day to day (and often hour to hour!); I think this is one of the most difficult things to deal with, you never know what you're waking up to! Most days, my husband needs support to walk within the house from e.g. the kitchen to the living room; on others (like today!) he can get out of his chair, walk to the kitchen and further without any help - usually this is when he has a purpose in mind! However, when he is more mobile there is a high risk of a fall (he has already fallen today) so it's a mixed blessing. Mostly he needs help to eat, but sometimes he can feed himself; sometimes he can get to the loo with help, sometimes independently, but most of the time he relies on the pads that he now wears. It is so frustrating! He was always very active and often says things like "I'm going to fix the washer on the tap" but in reality, of course that won't happen.
Such a frustrating illness!
I hope being able to share your thoughts on this group it will help you to cope, Indiana-Girl.
Unfortunately I would have to say yes it is the beginning of the end,however no one could predict how long that beginning might last. Having been the caregiver of my late husband with PSP,I saw most if not all of these symptoms come and go. They changed from day to day. My best advice to you is to take one day at a time and don’t try to predict what tomorrow might bring. Love him and be tender with him. My biggest regret is being impatient with my beloved.
What you are describing is very, very similar to what my husband is currently going through.His left leg is so stiff and rigid he can barely walk and he tries to walk on his heel instead of flat footed. His toes are curling downward also. Freezing is much, much more prevalent.
He has fallen 3 times in the past week even using his walker. He can still eat, but definitely more coughing and occasional choking.
Urinary incontinence is 100% as he cannot get to the bathroom in time.
Some days words just don't come or he makes no sense in what he is trying to say. He has started "pointing" more but I make him tell me what he wants.
Some nights he is up every two hours, some nights he will sleep 3 to 4 hours without waking.
He has significantly declined in the last few months. We just saw the specialist who indicated he could rapidly, steadily continue to decline or he could stay this level for "a while".
The specialist used the words transitional and palliative care this visit and would re-evaluate for hospice in 6 months. We are still waiting for the social worker to call.
You will see from old posts that everyone at some point feels they are on a roller coaster. Eventually the deterioration is permanent but there will be surprises ! Its the nature of PSP.My husband has died and like JantheNan I regret my impatience at times - but you would be a saint if you didn't get cross and impatient over a long period of caring. Just give him a cuddle and laugh when you can.
I know exactly how we can lose patience and then regret it. Mike is having a bad day, or at least afternoon, with major throat clearing and arm agitation and even (my pet peeve) teeth grinding. Think chalk on a chalkboard type of scraping noise. Plus he stands on the Lumex sit to stand instead of sitting so I have moved him to the wheelchair. I have honestly yelled and screamed at him and now I feel horrible because he doesn’t do it on purpose it’s this damn disease.
Mom uses that sit to stand almost her entire day as well, she doesn’t like sitting for long since it hurts her skin she said. The only problem we are having is she’s sitting too long during the day and that may have led to her swollen feet.
I am on the south side of Chicago, in your neighboring state. Based on your description of your husband's current condition, your husband and my wife appear to be in a very similar stage of progression. I could cut and paste your description for my wife. She was diagnosed with PSP 4 years ago, after being incorrectly diagnosed with Parkinson's disease 2 years prior to that. She has had visible symptoms for 7 to 8 years now. Based on my readings here and on the Cure PSP web site, I am guessing our spouses have transitioned to Advanced Stage, not Final. We could have a year, we could have 3. That's my best guess (and it is so hard not to guess). And when she was finally diagnosed with PSP, the Neurologist gave us a 4 to 7 year timeline. So now, I just strive to control my inpatience and make her as happy and as comfortable as I can. It is all we can really do at this point. This has been so hard on everyone. We have kids in High School and College and my wife is only 55. My kids are very supportive, but they don't discuss this with anyone. I really worry about them, but I cannot force anything. Time heals...I hope.
Good luck on your journey. I will be hanging around here for a good while still, I hope.
What mom’s doctor told us last year when she was initially diagnosed was that if you notice any steep, sudden decline, most likely there is some underlying conditions other than PSP. For example an UTI. Just in case I would recommend getting all those checked first.
But from my experiences and what others have already said, this demon PSP is well capable of causing all the decline in a short period of time. Other than the not able to see properly, mom pretty much has all the symptoms you described, on top of that, when feeding her puréed food, half of the time the food will get to her nose and cause a lot of mucus that needs frequent suctioning.
Recently she started to decline more with bearing weight on her legs and arms, need to be pushed from behind to stand back up or hold her back so she sits back down gently without knocking over herself.
Doctor said on average the expectancy from diagnosis to the end is 5 years, give or take. I find thinking whether we are nearing the end or not is way too stressful, I can’t imagine what she will be like a month from now, two months...etc
So just live in the moment, take one day at a time, one bathroom trip at a time.
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