Which symptoms occur when?

My husband seems to have a strange progression of symptoms. He cannot swallow at all since he had elective surgery for hip replacement a year and a half ago. He is on a feeding pump for all of his nutrition consequently, since his initial major complications following surgery, he has maintained his weight at just under 200 lbs. He is completely incontinent for the last month. He is slow to respond to questions from me - but always follows the logic of the question. He watches TV, especially sports (Stanley Cup currently) but he has stopped reading completely, He can, however slowly and erratically, use his walker to get to the bathroom or to the car. And he perks up for visitors - especially healthcare workers and his minister. He cannot dress himself anymore - even to pull his diaper/brief up. I have tried to find a list of criteria that might make him eligible for hospice care (in the U.S.) but so far I have only found "predictors" like decreased ability to be mobile, decreased ability to swallow, decreased communication, co-morbidities. The only thing he doesn't have is the last. He has not had any bouts of pneumonia or UTIs. We think his disease process started perhaps five years ago but he was only diagnoses in February of this year.

Does the onset of certain symptoms always vary so much from PSP patient to PSP patient? Am I still looking at long term (years) caregiving? Or is there anyway to know?

19 Replies

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  • Hi Carolsimmons

    My husband was diagnosed with PSP in October 2010 but looking back his symptoms began in 2006 or probably even earlier.

    He is very much like your husband in so many ways, except he is still able to swallow and can eat normal food, cut up, with plenty of liquids. He does cough and sometimes food does get stuck, but we always manage to dislodge it. Otherwise he is fit abd healthy, he has falls but on the whole they are not too bad. The hardest and most challenging thing for me to deal with is his agresssion and moods, but I'm off to see our GP this week to try and resolve this.

    Unfortunately I have been told by our local hospice Homecare team that they are unable to help us, which is a bit of a shame as I understand from other bloggers that they have had great care and advice from the hospice.

    We do have carers and they are very kind and look after him well when I do get out, but as you will know, the bulk of the caring is done by ourselves.

    How long is long is long term care with PSP is a difficult one, I have read that the average time for the progression of this disease is 7 years.

    Keep blogging though as it is a good source for advice and tips and it is great for the morale.

    all the best

    dorothy-thompson

  • Hello Caroline

    I think you may know most of this but....

    PSP is a very individual disease, although diagnosed finally with a few cardinal clinical signs. Mainly walking and balance problems with early falls and vertical gaze palsy with slow saccade (eye) movements .Swallowing and speaking difficulties can come early,along with personality changes and cognitive problems like the inability to find words. However, the degree or severity and rate of progression varies widely with each sufferer.

    This results from the fact that over a dozen areas of the brain are affected (neuron death and interruption to signals and pathways in the brain, causing more symptoms than mentioned above). These areas are damaged with different severities and progression. Therefore, someone can still walk with an aid but may choke on all types of food, indicating the area responsible for balance and posture and gait still has a reasonable number of neurons still "firing" while the area (nerve pathways) affecting swallowing and speech has totally deteriorated.

    To put it another way, once the initial symptoms occur (e.g. walking difficulties with falls), that area of the brain may have already lost between 50-80% neuron function. After that, a person may experience rapid loss of the remainder and be bedbound within a year or two while a few others are still walking with aids after 10 years!

    To answer your query, no one can predict the length of time for your caregiving, except in general terms and with statistics. Surgery with general anaesthesia can speed the progression of PSP and initiate more severe symptoms. Feeding with a PEG system can prolong life, but aspiration pneumonia can still occur through mouth secretions entering the lungs. As you know, most PSP patients pass away due to aspiration pneumonia (and infections). Some others through complications of falls (usually head injuries),choking or neurogenic respiratory failure. Many PSP sufferers have other diseases and this gives a poor prognosis for the sufferer.

    As we often say. we take each week as it comes and hope we can provide as much comfort and care for our loved ones as we watch this awful disease take its toll. I do wish for you the strength and patience and courage as a carer. I cannot imagine what it is like to be the one who has this disease, so I don't know what words to express for your dear husband.

  • I will try to be positive about all those brain cells that continue to function well. It's so easy to forget when things go so wrong. With the incontinence, I am looking into condom catheters. Does anyone have any experience with them? Caroline

  • Hi Caroline, my partner used the condom type catheters (we call them conveens) post misdiagnosed stroke damage as his mobility worsened pre PSP diagnosis and they helped a lot. Difficult to put on at first but you soon get the hang of it. Some men however don't like using them. They get pulled off occasionally at night but I always put pads on as a damage limitation exercise and we always made a joke about it so I never had a problem with him not wanting to use them.

    Good luck, Jan

  • My husband fell every time he got up to go to the restroom with resulting fractures, abrasions, etc. after 3 UTIs in succession, his urologist recommended a suprapubic catheter which, although with much maintenance, has been a Godsend...no more falling at all. He is now wheelchair bound. Be strong, this disease takes all our God given power!

  • caroline ==========hi strelle another full and comprehensive report thanks for that mate ---------- but now onto caroline

    well caroline ive been livng with psp since the year dot it feels like it \\\ my speech is terrible and my swallowing is bad \\\ ive had falls \\ i now use a walker and a walking stick now and again to get around but im still active as much as i can [ i had two falls yesterday ] the thing i can say about the falls it takes a lot of confidence away from me but im still here thats the main thing

    i find life very enjoyable in the circumstances \\\ i no longer have to much to say in the running of the house and other things now im afraid thats up to my wife she is my carer as well\\\ i still have an opinion but i seem to get lost with it now and again \\ my handwriting is well had it\ to put ibluntly\\\\ now that was the negative side \\\ the positive is im still above ground i can still see the trees and garden and the birds i consider am pretty well off seeing all the blogs about some of the people with psp at the moment that is \\ i have a good family my sons i have two one rings me up every day

    and one of them because of work commitments and rings when he can \\ i also have a daughter who is an absolute champion she rings every day as well they are all good kids and there are no favourites despite i said my daughter is a champion she is good to her mother and are very close i am not a religous man but someone or something has been looking after me i did not go into psp about your husband i wish him all the best i know its hard to stay positive at times but do try \\ i wish you all the luck in the world take care look after yourself because you are important to us peter jones queensland australia psp sufferer

  • You are amazing, Peter. Thanks for reminding me that there is so much that is still positive. Caroline

  • Well said mate! I know your daughter is an absolute champion, but I think you are too!!!

    Take care.

  • I think you are amazing Peter, You are ALL amazing, counting blessings, sometimes so hard. every good wish Flicka x

  • hi caroline strelle and flika thank you all for your kind words and flika was right when she said WE ARE ALL AMASING PEOPLE \\THAT HAVE BANDED TOGETHER BY MISFORTUNE BUT WE WILL GET THERE IN THE END \\\\YOU WILL SEE !!!! SORRY ABOUT THE S IN MISFORTUNE BUT STILL CANNOT GET THAT LETTER WORKING ON THE COMPUTER WELL TO ALL CARERS HAVE A GREAT DAY TOMORROW AND TO FELLOW SUFFERERS I SAY KEEP, YOUR CHIN UP TAKE CARE PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER.

  • I wish I could give you some certainty in PSP but there is none. Each patient can be different in many ways and yet similar in others. There is no way to predict how long a PSP patient might live. I've heard estimates of the longest being 11 years and shortest 3 but again, no one can tell you for sure. There is a list of "stages" but again there is much controversity and questions about the stages because of the difference in PSP in different people. It is too bad that he had the surgery because going under anathesia is not a good thing for PSP patients. Sometimes they don't return to where they were before the surgery. Not always but many times. I've posted here many times my thoughts on PSP so if you've been here a while you probably need to stop reading at this point. My take is to live one day at a time. Don't worry about what is ahead. Don't worry about "stages". Don't worry about how long the patient will live. You can't change any of it and worrying about it or wasting time over it is very non-productive in my mind. Remember, the PSP patient could aspirate and get pnumonia at any point. The patient could fall and break a hip. The patient could get a UTI and not recover from the effects on their system. I'm afraid you've entered the unknown world of PSP that we are all forced to dwell within. Hang in there and do your best.

    Jimbo

  • Jimbo,

    This is obviously great advice. And I will try to do as you say. A caregiver was here today and noticed some changes in my husband - decreased heart rate, lack of response to her - two things she described as very different. We'll see how things go tomorrow and if I notice the same things.

    Thanks again,

    Caroline

  • We had Hospice in last week and even though my wife is in the early stages of PSP she indicated that if the neurologist approved Hospice they would come in to help. Hospice has many services besides end-of-life care near the end. I think they will come in and then do an evaluation in 90 days to see if they will continue to support the patient. Call them.

    Jimbo

  • The hospice intake nurse offered to do just that and the Medical Director said that was illegal! It wasn't the neurologist but the primary care physician who made the referral. I guess every hospice has its own rules so long as they satisfy Medicare when they ask for reimbursement. But thanks.

    Caroline

  • Caroline:

    I didn't read carefully thru all the posted comments, but going back to your original question ending in "comorbities"...what are they and who decides what and how many comprise "comorbitites"?

  • Hi Judy,

    A co-morbidity is having another problem along with (in this case) PSP. I liken it to having heart disease or diabetes or even the pneumonia and urinary tract infections that PSP patients so frequently get. Fortunately my husband has not had these last two but he does have high blood pressure and atrial fibrillation. The doctor would diagnose any co-morbidity, usually after symptoms are presented by the caregiver. I hope this explains and answers your question.

    Caroline

  • Thanks for taking the time to answer my ? which you did very clearly; it was a term I hadn't heard before.

    Take good care.

    Judy

  • PSP patients can be admitted to Hospice due this being a terminal illness. The 6 month criteria does not apply. As long as you obtain an MD Rx from your doctor requesting Hospice, you will be admitted & recertified every 3 months with orders from your MD. As I've learned over the last 7 years personally, my husbands decline has been slow, beginning with imbalance, then frequent falling, fractures from the falls, progressing to a weighted u walker to now, a wheelchair, he is now total assist including eating, at home with an out of pocket, 24/7 caregiver. He has a supra public catheter after frequent UTIs but is still continent the other way. He has been in Hospice for 6 months now. I commiserate with anyone going through this; it is emotionally and physically exhausting. One MUST have help; I have had 3 surgeries myself in the last 3 years & finally relented to getting help. God Bless & keep you strong.

  • Not everyone in the UK has been so fortunate to have hospice. I can't remember all the particulars now. But in the states, you still have to meet that 6 mos. criteria. But as that hospice Medical Director said, "A PSP patient will always qualify for hospice and will always outlive his prognosis." My husband has just reached his 6 mos. of hospice care. He is pretty stable for now except that he cannot walk, doesn't talk much, and cannot swallow much - certainly not enough to sustain himself. Thus, the feeding tube which has been in place a year and a half. His weight has stabilized at about 180 lbs. He has never had an infection of any sort other than the one that happened just prior to his diagnosis. And that was of his gall bladder following hip replacement surgery.

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