Who Knew???

My husband went into the hospital for an elective hip replacement. Four days later he was on a ventilator because of gall bladder major infection. Came off ventilator 13 days later unable to swallow at all. Everyone, including the doctors, thought it was a temporary thing caused by the tube in his windpipe. Now, 1 1/2 yrs. later, he has never swallowed successfully and has since been diagnosed with PSP.

Looking back, there were signs of impending crisis but he was always able to explain them away. Dragging one foot was because of his hip. Not talking was because he didn't have anything to say. Clumsiness was just tiredness and aging (72). He was cleared for the hip surgery by his Primary Care doctor and his orthopedist. Actually I guess there was not really any correlation between he surgery and the eventual diagnosis. Just coincidence.

We now look back even further. He has had two shoulder surgeries from falls he sustained in recent years. PSP? His ex-wife found him wandering around in the airport as if he didn't know what he was looking for. This was five years ago. Who knows how long he has been battling this awful disease.

He has been on a feeding tube since 4 days after his hip surgery. It runs 24/7 and is the bane of our existence. He does come off it for trips to the doctor. Otherwise it has been like a tether that keeps him pretty isolated from the world. Initially, I could take him out and drag all the equipment. Now his walking is unstable even with walker and assistance. He sleeps 16-18 hrs. a day or more. He moves from his bed to his recliner - keeps his eyes closed and his head back. He is mostly incontinent of urine.

I now understand that some of these things are common to the disease process. The Q & A part of this site and the blogs have been extremely helpful - comforting in some respects, dreading in others.

I asked hospice to come evaluate him and they did. He put on a real show for them. Perked up, answered all their questions (not always truthfully), made eye contact, made jokes, etc. At first they said yes, but the Medical Director said it was "too early." Home Health only gets paid by Medicare for "improvement goals met." So we are back to private pay for any help we get.

I hate this disease - as we all do. The inability to communicate easily and the lack of things for him to do are so frustrating. He used to be able to read and did. Now he only watches TV and sleeps. We are looking into talking books to see if that will interest him.

Thanks to EVERYBODY who has participated in the blogging and the Q & A. You have been such a great help and support. I'm so sorry that your loved one is going through this awful disease and that you are struggling to care for them and yourself. God willing, we can make it.

15 Replies

  • Dear Caroline,

    Whilst I can only regret your need for this site, I am really pleased that you have found it useful. Do try the talking books and possibly talk radio too; both might help particularly if your husband is having visual difficulties that prevent him reading.

    It is amazing how people can pick up when they get visitors isn't it? Mum does it too. She often interacts better with people she doesn't see so often rather than the family who see her on a daily basis.

    I hope you continue visiting this site and finding the support you need here.

    God bless


  • I am so glad I spent hours on my computer last night just looking for a site like this. Thank you for your comments.


  • Welcome Caroline,

    We are a friendly bunch, kept me sane for sure many times. My mum has PSP, I've had great support from everyone here. We all try to help, advise and sometimes have a giggle. No subjects are taboo I find, always feel free to ask any questions you may have.

    Best Wishes

    Jo xx

  • hi caroline welcome to the site it will be nice to have your input ,sorry about the trouble you have had with your husband and having psp as well its not much good this psp is it mate but we will get there in the end won't we \\\ its not much fun being a carer there's always so much to do but we know this and if the shoe was on the other foot we would be doing exactly what you are doing now so take care caroline keep your chin up keep smiling hope to hear from you again sometime\\ i to have psp which is not much fun but never mind we will do our best peter jones queensland australia psp sufferer

  • hi jo jo hows mum going !!!! good i hope ive changed to rap dancing now hope you are keeping well and your sense of humour i think without it we would all go crasy yes i know the word crasy is not spelt correctly but my puter wont let me get the letter up regards to mum take care grandad peter jones queensland australia

  • Dorothy-thompson

    Hi Caroline, everything that's been said is so true of this site, everyone is so supportive and very knowlegable. My husband has had PSP for nearly seven years but only diagnosed in 2010, it is very hard being a carer as every carer will know, accept any help you can get it does ease the load a bit.

    Best wishes and take care.

  • Welcome Caroline. I'm sorry to hear about your husband. My mum has had PSP for 8 years but was only diagnosed in 2009. I'm sure you will find this site as helpful and illuminating as I have.

    How come your husband is feeding 24/7? Is it a PEG or NG regime? My mum had a PEG fitted April 2012 and for the last 12 months has been on a 1000ml (1.5 Kcals per ml) feed 10 hours a day as the flow rate is 100mls per hour. If it can be tolerated this can be increased to suit your husband's circumstances. Last month mum went onto a lower calorie feed and she tolerates 150mls per hour so it is only running for 6 hours overnight. Have a word with your husband's Dietician to see if things can be changed for you both, at least if his feed runs overnight you can both get out during the day.

    Best wishes to you

    Take care


  • Thanks! I will ask the dietician. While he was still in the hospital after the hip surgery, he was getting four boluses a day. One night he aspirated and went back on the ventilator. I know this necessitated the J-G tube and the 24/7 feeding. But it's been a year and a half. Maybe it's time to re-evaluate. He is currently at 65 mls/hr. The J part of the tube goes into his jejunum and the G part goes into his stomach where the medications get delivered. That way they were thinking the food would stay down.

    Thanks for the suggestion!


  • Ok he's got a JEG, that was another option for mum as when they initially attempted to do the PEG they found she had a Hiatus Hernia so had to have a second attempt at it but if it hadn't worked that time they would have given her a JEG. She started on 50 mls/hr and I gradually increased it to 100 mls/hr. She has been having 150 mls/hr in the last month. It may be that because the Jejunem is smaller than the stomach they feel a small amount per hour is appropriate. However after 18 months I would have thought that it would be time for a review.

    Best wishes


  • hi caroline

    welcome to the site1!!

    hope it is helpful to you

    I AHVE PSP BUT AMS SITLL HERE BLOGGIng btu dyslexically

    lol JIll


  • Welcome to the site, Caroline. I stumbled upon it myself about 6 months or so ago; it's helped me tremendously with use information as well as not feeling so very alone in my journey with PSP given it's rarity. Doesn't leave a lot of options for people to talk to about this and actually have someone understand what you're going thru.

    I had a somewhat ironic experience April 2012 like your Father's. I am 54 and had been experiencing PSP symptoms for at least 2 years before it was diagnosed during August, 2012, after several rounds of comprehensive testing.

    Last April, I, too, had an elective right hip replacement. I was born with mal-aligned hips/knees & bothered me throughout my lifetime. Was told in 2002 it needed to be replaced due to it's severe arthritis, bone-on-bone w/nerve impingement, etc. Life's circumstances forced me to wait 10 years to get it done. That was in early April; toward the end of April, 2012, I had an emergency gall-bladder removal.

    Between the 2, but especially the hip replacement, I just never fully recovered. More PSP symptoms began after those surgeries, including swallowing problems, aspiration events, etc. In hindsight, knowing what I know now, I feel very fortunate.

    I just posted a blog today you might be interested in taking a look at titled "Follow-up to my sleep study and anesthesia questions answered. Most of it speaks for itself.

    However, I found it interesting, however also sadly, that after his hip replacement, was placed on a ventilator, and when removed, he could no longer swallow.

    When I visited my Neuro on 5-30-13, he told me in no uncertain terms that anesthesia is very risky in person's who have PSP. He stated inserting an airway isn't the issue, it's what happens after it's removed. It's complicated, but if I understood him correctly, the risk with PSP sufferers is either the central nervous system and/or the autonomic nervous system that controls the lungs, heart, and a few other organs, don't always work properly again. I might be off-base, but to me it begs the question, even tho he wasn't diagnosed yet with PSP but seems to have had it, if he did have an adverse reaction to anesthesia which caused him to be unable to swallow on his own.

    Also, for what it's worth, the specialists I've worked with regarding my PSP, have all said the symptoms start, sometimes subtly at first and then begin to escalate, sometimes years before it's actually diagnosed. And, actually, that is quite a common experience.

    My heart goes out to you, your Father, and your family members and friends. This is a unique, complicated, and debilitating disease.

    But know you are in great hands of the loving, empathetic, and informative members of this site. I don't know where I'd be if I hadn't found it.

    Best regards,

    Judy J

  • Thanks, Judy. It's eerie how similar the situations are! Incidentally, it's my husband not my father. Hope things are going well for you. How did the hip turn out? Bill never had a moment's problem with his. Just everything else!


  • Cripes, sorry about the relationship mistake...

    My hip replacement was a bust. I'd seen my Ortho for 10 years and trust him implicitly. Over the course of those 10 years before I had it replaced, several arthroscopic procedures were done to clean the hip joints of torn cartiledge, bone spurs, free impinged nerves, etc. Those helped, especially the earlier ones, but the later ones, not so much. The joints were too torn up inside after a life time of being mal-aligned.

    I also had several MSA procedures during those years, too. I don't know if your husband had them, but they'd insert a catheter through the groin and inject a cocktail of dye (so the could see the joints on their high tech cameras), novacaine and cortisone, to help reduce the inflammation and tenderness in the joint. Those procedures were done w/o sedation, and the novacain wasn't injected until the rest of the cocktail was after the catheter with the camera was inserted first. Very painful at least in the moment and sore for a few days but did provide adequate relief; had those 2-3 time a year.

    I didn't seek treatment for my mal-aligned hips/knees til 2002, tho the symptoms and great discomfort started when I was a tween. My youngest daughter, Melissa, started experiencing the same symptoms when she was a tween. I started taking her to my Ortho; unfortunately, this is a genetic or inherited condition. Between 10th and 12th grades, she had 4 hip surgeries; 2 minor, and 2 major which left her off her feet and on crutches for a month at a time. She just came home from college and needs to get back in; both hips & a knee are really hurting her.

    My plan, prior to the PSP diagnosis, was to get my left hip replaced at the end of June 2012, following my early April 2012 right hip replacement. The gallbladder last April was a total surprise, and as I said, consider myself lucky knowing now what I know about anesthesia. Prior to my PSP diagnosis, the continued plan was to get my right knee replaced this year as the joint is very '"crunchy" and the knee plate (?) comes close to sliding off. Because of my new found anesthesia risks, I've totally let go of the idea of having those replacements done since I had an incredibly hard time recovering from the 2 surgeries in last April. And as long as I get help with pain management, which there is a considerable amount of.

    The reason my right hip replacement didn't 'take', it was determined, is because of the PSP. My Ortho group is top notch and always ahead of the game in terms of forseeing which hardware NOT to use because they saw the problems which have led to recalls.

    Prior to my replacement, it would not be an overstatement to say I was suffering from the pain, inflammation, grades 3-4, mostly 4 arthritis, nerve impingements, 24/7 a day. It got harder and harder to function and impossible to sleep because it kept me up at night and no position was comfortable for more than a handful of minutes.

    Going into the surgery, I took a 4 hour informational class about all the details of a replacement. One of the biggest points they made was to NOT expect a perfect result, total mobility, and like 'new again'. They stressed there would/should be major improvement but to expect continued discomfort and physical limitations.

    Tho I was 53, I opted to go into a transitional care facility to optimize my recovery. Tho my kids were young adults, they were still my kids, if you know what I mean. And I had a lot of pets to trip over. Most importantly, way too many steps to navigate and no good area to set up an area for me to stay on the main floor. Even in the transitional facility with physical therapy, I was surprised at how hard it was, how exhausted I felt, and how much my hip still hurt; dismissed it as needing a lot more time to heal.

    But the summer months came and went and my hip pain regressed back to what it was prior to the replacement. My ortho x-rayed the hardware to make sure it was in place because I had taken some hard backward falls due to the PSP. He consulted with my Neuro. Gave me a shot for bursitis but was not optimistic about the outcome. Said if it didn't improve right away and stay improved, the pain was due to the PSP. Since it's also a movement disorder, I was told PSP likes to negatively fiddle with muscles, tendons, ligaments, etc. and that surgical site was particularly vulnerable.

    I have no regrets about not getting it done sooner. It was just the way life's circumstances were for me. I was newly divorced, and if I didn't work, I didn't get paid. Got caught in that post-divorce slippery slide downward spiral. My girls were tweens then young teens. Melissa needed her hips taken care of and I needed to help her with that as well as other issues. My oldest daughter, Katy, 22, is a wonderful young woman with special needs, but the teenage years were rough between special education, getting her the right treatment and sometimes meds for her disabilities. It is what it was. I am no hero nor am I a martyr; just have to do what you have to do, and I have wonderful young ladies to show for it. And it all made me stronger.

    I am so glad to hear your husband's replacement 'took', so-to-speak, but certainly aside from the other issues that arose from the surgery. A bad hip is like a very bad tooth-ache; you can never get away from it; I can commiserate! So glad that's over for him.

    Please remember to take the best of care of yourself as well. Create special moments if you have too. Being a caretaker for my girls, I know how hard that can be and sometimes out of sheer exhaustion, you end up last on the list.

    The very best to you going forward and keep us up-to-date by blogging!


  • Judy,

    So much to deal with in one lifetime. Surely you are earning stars in your crown. Best wishes!


  • Hi Caroline,

    I too welcome you to this site, however it is sad that any of us need to here. My husband has psp and was diagnosed in 2011. On reflection he has probably had psp for about 5-6 years. It started with personality changes including moodiness, short temper and neglect of his personal appearance. Then the falls started and like many sufferers he had some nasty injuries, including a fractured skull, numerous stitches to his face and a dislocated shoulder that required reconstructive surgery.

    He is now at the stage where he can no longer do anything for himself and just spends his days watching TV or sleeping. He doesn't want to do anything. So frustrating for all of us.

    He has just asked to go to bed, so I must away, but do keep blogging.

    Best wishes to you and your husband.


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