Hi everyone my husband was diagnosed with psp about 18 months ago he gets urine infections all the time and has to be hospitalised he has

A catheter also his arms and legs have gone rigid fingers are all curled in just seems to have gone so fast enjoy reading all aspects on this site makes me feel I'm not alone feel so helpless for my husband does anyone else have these symptoms thanks xx

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  • Oh Kris1983, I'm very sorry for what you and your husband are going through. Just 18 months - that seems a very sudden decline - how long do you think your husband was displaying symptoms before the diagnosis? Have they tried a muscle relaxant for the rigidity? Some people here report that massaging and applying heat to seized muscles helps. You are definitely not alone. Hang on. Best wishes, Easterncedar

  • Your husband sounds remarkably similar to mine,constant UTI s ridged muscles curled fingers.

    They tried putting a urethral catheter in last night but couldn't get it passed an enlarged prostate we are hoping for an appointment for a supra pubic catheter but apparently all the urologists are very busy ( thinking of going private bet suddenly they will find the time)

  • Hi Joey -

    It was my husband who had PSP (and managed with a "normal" catheter) but we had experience of the supra-pubic when his father lived with us. He needed it for (as in your case) an enlarged prostate, but also he was 95 at the time.

    It stayed in place OK but did tend to become blocked. That meant calling out the District Nurse or GP (why do these things always happen at weekends or Bank Holidays?!) - the GP would be whoever happened to be "on-call". Our own GP was a real treasure.

    Sometimes they felt able to do the replacement but otherwise it meant going to the local A&E - who were always superb, no fuss, but it was some years ago and the A&E didn't have the same pressure of numbers of patients that seems the case now.

    Hope you have a good outcome.

    Mo

  • Bonjour Kris! Youz are dead right ...you are definitely not alone. On this forum we're over 1400 friends who post. They are PSP/CBD sufferers and carers who bring all kinds of help, advice, comfort to people like yourself.

    I'll go so far as saying ,Kris that this PSP forum is collectively more knowledgable about this horrendous disease than a flock of Neurologists, herd of General practitioners, gaggle of nurses!

    The urinary symptom I believe is not rare and could be caused by a reduced liquid intake. As swallowing liquids can become more difficult later on in PSP the plumbing system isnn't thoroughly washed out and infections arise.

    In PSP the last 'P' stands for the old word Palsy. In todays language it's paralysis. The rigid arm part with the curled up fingers is indicative---I don't want to say 'normal'. It was one of the first symptoms my bride had...and its unfortuneately permanent. Rigid legs too, I'm afraid. Physiotherapy could help.

    Don't forget Kris that your Hubby has been walking around with PSP for the last several years but as you say it was only diagnosed 18 months ago.How old is he?

    The 'S' in PSP stands for the eye problem, double vision, staring, glazed look,can't look up--or down, inability for any optician to make a pair of usable eyeglasses .Does your hubby have any of these symptoms?

    Well Kris ,sorry to welcome you aboard!

    Keep in touch with our forum as you need it.

    Thinking of you.

  • my dad has had urinary infections as well and course of antibiotics to sort it.

    agree with ultramodern - the fluid intake is key - need to make sure he drinks plenty - this also helps saliva and practice of swallowing.

    urethral catheter can help but he need to be cured as this can make make have UTI as well

    if you are not registered with the PSP association in the UK ( if you are UK based ) I would recommend you do

    they have a great booklet with tips on how to manage the disease.

    for the stiffness - I would check with your consultant/ neurologist as obviously I dont know what meds he is taking... Physio does help

    Good luck

    gwend

  • UTI are frequent in many PSP patients. Since he is on a catheter the chance of a UTI is more of a risk. I'm sure the medical profession has told you about the importance of changing the catheter frequently and of course with every removal and re-install the chance of infection is a danger. However, a good thing is that with the catheter it is more probable that he is voiding properly and urine is not being retained with in and of itself may cause a UTI I've heard. As far as the hands, my dear wife is in about year five or six (best we can tell) of PSP and her fingers are just beginning to clinch a bit. Not really bad, but just noticed, a bit. Sorry I couldn't be of more assistance. Jimbo

  • MY dear wife has had over 20 UTIS in last 14 months, she has one at the moment, She has also had 6 pneumonias. I just wonder since PSP is a palsy affecting musculature, whether the bladder can also be a target. If the bladder doesnt fully empty, the reminaing urine is prone to infection. In our case we have poor emptying.We did have a catheter, but medics felt it wasnt helping the UTIS. We were better off handling the incontinence which also accompanies poor bladder emptying. Best wishes to both of you. jmmmb