Hi, am new to this page. My Dad suffers from PSP, it's a really crappy disease and there is such a lack of information out there for families. We are at the stage where we know more than the doctors. Most of our information has come from here from all of for your posts and personal experiences, thank you x.
I would just like to ask you have any of you experienced body temperatures being totally out of whack ie. when we are cold he is roasting and when we are warm he is freezing. Doctor doesn't seem to know if it's related to PSP.
Thank you
Fionnuala
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Doohanflo
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The first time my husband's temperature reached 103 degrees I called the out of hours doctor. By he time the doctor arrived it had gone down to 100 and by the time he went it was nearly normal. I had put a fan in the room and cold flannels on his forehead. My husband couldn't tolerate antibiotics so infection could have been serious but within hours he was back to normal. It happened frequently after that so I never called the doctor again, just cooled him down with a fan and cool compresses. The emergency doctor said that people with PSP, like babies, can't control their temperature. When he could no longer help himself I had to keep an eye on the outside and room temperature and dress/undress him appropriately.
Hi, yes still here and doing amazingly fine. It suddenly hit me the other day that now is the first time I've lived alone, staying with parents until the day we married. I thought I'd hate it but have surprised myself. I can do what I want when I want without having to consult anyone. Today I've been to lunch with friends and am out to dinner in a restaurant with different friends tonight. Tomorrow I'm going to London to the theatre. I'm rarely in and get to stay with my grandsons when I like. One of our sons text me and asked if he can make an appointment to see me.....I went out with him and his wife on Sunday.
Of course Colin is still a big part of my life and I shed a little tear most days when I hear certain music, see his photo etc and I would much rather him be here, healthy and happy but I can't change the situation so I'm going to make the most of what I can do.
I know there are so many still suffering, those living with PSP and their carers and I think of everyone of my friends on this site often, checking in daily to see how you all are but for me life is good at the moment.
Bev u feel that way because you have such a clear conscience . I was the same with my mum , we turned ourselves inside out to do the bpbest we could for her . Doing the same now for my beloved J ,.
Not exactly the same but I hope when to time comes it will help me ..
I'm sure it will help you. If you know you are doing all you possibly can, and I know you are, you will have nothing negative to dwell on. Memories of the good times will outnumber all the bad ones. I now remember C as a jolly, smiling man who made me very happy for many years. The last 6 were a fraction of the time we have spent together so I don't need to dwell on those.
Yes. Psp messes with regulation of temperature and circulation. Folks can be quite ill, for example, and never have a fever, so you can't count on the thermometer to clue you in on a possible infection.
Body temperature is controlled through this response as are eye gaze, breathing, swallowing and elimination (sweating and or saliva, urine and bowel output).. and several other issues Pspers suffer the loss or diminishment of . As the Person gets deeper into the disease their ability to keep a 98.6 F (37C) gets more difficult.You must first rule out any illness like pneumonia or UTI the two seemingly common afflictions with PSP. Once you can say definitively it's not an illness., then treat him according to his temp of the moment. blankets, or his own personal fan to cool off with....My husband usually shoots up to 102.6 in the evenings.....I will give him aspirin and he does cool down so it may be lingering illness still rearing it's nasty head....I just make sure he is as comfortable as I can get him....
The Medulla Oblongota...it's the base part of the brainstem which regulates the heart and lungs....I just found that....but wait we are talking about temp....I don't know exaclty where....by time this is all said and done I can get be a JR. Neurologist....I'll be back
Kim's neurologist told me that was part of the body shutting down and unable to control temp. But that was going on for over a year before she passed, so she was wrong, or at least in Kim's situation.
How long does it take a body to shut down. I expected B to be gone before his hospital stay was over. Then I expected him to be gone by the end of the first week or so after he got out of the hospital....and now he too is having temperature highs (though I have not ruled out infection) and, he cannot hardly breath....He cannot even get the oxymeter started...when it does finally get a read, its not horrible; 02 at 93%, 80-100bmn (beats per minute) which is average to high and if he does anything it shoots way up to 118-120 bpm.....bp is low but good...respiration is high and shallow that's why bpm is so high, heart has to work for that oxygen he hardly gets
....I wouldnt be ready but I would not be shocked if he didn't make it to end of March....of what year I cannot say...At this point, I guess I would not be shocked if he outlives me.....
Kim's heart rate stayed pretty high during her final year ... probably averaging 110. Temp seemed to average around 100. And O2 was around 93. But her final week, O2 dropped to the mid-80's. And once she got down to around 80, they told me she was in a coma. Never left her bedside for days. And when the O2 hit 50, she was gone in less than 15 minutes. In her case, her right lung was totally clogged. It was probably that way for almost a week. Because so little air was flowing in that lung, the nurses and doctors couldn't hear any sound. Usually they are listening for crackles. After I finally gave up on hospice and not willing to give up on Kim, I rushed her to the ER where they took a chest X-ray and discovered the mass infection in her right lung. They tried antibiotics for 2 days and no improvement. That's when we stopped giving her oxygen, peg feedings, water via her IV, and any more attempts to suction her throat. One of THE Hardest things I ever had to do. I still look back at that night and visualize every heartbreaking moment. I'm so sorry for writing this. I'm still in pretty deep mourning. I just lost my stepmom this past Monday to pancreatic cancer and pretty much re-lived some of this all over again. That was tough, but my love for Kim was a million times more than my stepmom. She and my dad were married for the past 13 years and I truly cared for her. But this past year, she and her 5 adult kids (ages 40-57) all turned on my dad and treated him horribly. Visitation is tomorrow and the funeral on Friday. I truly dread being around these low-life step-siblings. And it's going to be hard to mourn a stepmom would turned so mean in the past few months. I realize it was the disease doing a lot of this. But a lot of hurtful things have been said over these past 2 months which will be hard to erase. I just want to turn the clock back 13 years; have my Kim all healthy and strong, and tell my dad that he needs to reconsider walking down that isle again. I know for me, at only age 56, there is no way I would want to go through what all he's been through. Being single is hard; very lonely at times. But I'll take that over what he was served up. Sorry to rant. Quote me a good verse that will help me overlook this evil and try to forgive.
I am so sorry for your loss...or, well, worse yet to have to relive the process of death once again. You need a break Dan...maybe a nice place on the beach with couple of your own kids and or an old buddy...
Hows your dad.....now there an old buddy who could use a trip....in a couple of weeks.....
I'm sorry i don't mean to be flippant......I actually have tears in my eyes for you right now.....
after reading M's last year, it sounds so much like whats going on with B....When was she diagnosed....?
It's so hard to see my husband crumpling up as his neck atrophies or spasms to the point where his head lay sideways and the rest of his body just sort of collapsing.........and yet maybe it's denial but he seems healthy...I'm sorry you feel so all alone...You are a great guy and really, don't be afraid to take steps to make new friends, male and female.....
Kim was diagnosed with regular Parkinson's in January 2010 and then later diagnosed with PSP in April 2011. Died 7/9/16. Looking back at old photos and recalling some earlier symptoms, I suspect she probably had it for close to 10 years.
The beach does sound nice and I've reserved the unit that I have up for rental for the last 2 weeks of March. I'm planning to take my dad with me, as he could definitely use a break. And my son and his family will be coming down for one of the 2 weeks for my granddaughter's spring break.
Kim's head started sagging during her last year of life. And was really bad for the last 2 months. It usually just pointed downwards, like she was looking at her lap.
Hang in there Andrea. Treasure these days.
(sorry for calling you Ann previously ... got you mixed up with our other favorite PSP'r ... Miss Heady ...
Poor Bruce....I tried to get him from recliner to wheel chair. Usually a doable project...but the last few times the difficulty has become daunting.....His forward head thrust has disallowed him from even picking his head up ...as if gravity had a greater pull on that than the rest of his body....and now his knees are buckling .....once hes on the floor I can no longer get him to use the method we used to use to get him up... (roll onto knees find a stable chair etc. ,put foot under knee, and push up...simple....no more...) I have had to call my son to help me . I am calling hospice tomorrow and ask for a sling...
Did you say Kim was in hospice and you took her out...what discouraged you about them? they say they are not just for the dying, but they do not seem to provide any care to get better with either...I do love B's hospice and where he is at now...and well we need them..... You worked hard for Kim
Your outing to the sea sounds fabulous a needed respite for all ya'll....
AVB
PS I'm sorry for calling your wife M.....Pretty soon we'll be forgetting what we call ourselves!
She was covered under hospice for 7 months. They were so-so. Didn't really provide much relief to me and sometimes would be a hinderance to get things checked out, such as a UTI, which is why I bought my own UA test strips. But I never officially pulled her out of hospice. Surprisingly they do have some criteria that allows you to take them to the ER/hospital and they cover the expenses. They won't cover a regular ambulance, but will provide transportation if needed. I was in such a hurry to get her there, I enlisted a lawn service guy that was out in front of my condo to help me lift her into my SUV. There were 2 of them out there. The first one didn't speak any English and I think he thought I was trying to move a dead body, as Kim appeared almost lifeless. But the other one did speak English and I told him what was going on. Since hospice could tell she was only going to survive a few days, they didn't force us to go back home. So she had a 4 day hospital stay before she passed.
Yes our hopice says that if injury or illness(?) is not the reason why he's in hospice then you can take patient to hospital....but he is in there due to lungs and UTI....I don't know if they would prescribe even an antibiotic....I have decided not to further investigate his lungs as I feel that the lungs are not just responding to the old pneumonia. For months prior to his illness, he started losing his ability to breath in deeply, He was healthy but daily things like smoking or going up stairs....or even up the ramp became difficult at least....he quit smoking .....not because it was a good thing do ...He simply could not do it....when he became ill he could not bounce back..
Thank you Dan, you hang in there too... is your dad doing ok?
I hope you can get a lift, Mrs B. I just managed to use the one we were given in september for the first time (!) last night and it was wonderful. My guy had fallen out of bed for the second night in a row. I had picked him up the first time and did myself some harm, very sore the next day. The second night I unearthed the lift, threw off the clothes hanging from it, maneuvered it over him and it was miraculously easy, once I'd gotten the sling in position to raise him, to slide the lift over the bed and lower him down. Whipped the sling out and he was asleep so fast he didn't remember a thing about it in the morning. I was so happy and relieved! I wish the same for you, my dear. Love, ec
Wow...Yes I asked the nurse for such a thing....they were not sure they had it, but I also went on ebay and even if I have to buy it, it may be worth it....My poor tired son came over again....of which I was very thankful....
We just recieved one. The man dropping it off could not show us how to use it except to tell us what goes where....We have to wait for the nurse to help us...How do you get it underneath the man when h's in the chair....Do you keep it there once it's in place...surely not....well questions to ask the nurse tomorrow I suppose. B is having a really hard day breathing so I won't try to fenagle him in and out today anyway....
You sort of slide it behind and under and pull it down incrementally, having him lean or roll to one side and then the other, and then you tug! Mind you, I have only done it the once so far, and he was on a bare wood floor. But I saw the therapist do it with him in a chair, and so I do know it can be done.
“but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Isaiah 40:31
Sorry this took so long....so how does this relate to forgiveness....A a strong man forgives.....
And now, really there's nothing to forgive....no evil to endure only back to the good memories some 14 years ago and move on.....
I hope you are doing ok....
Bruce is not doing well! it's allergies....and he cannot breath ....called hospice they said diphenhydramine.....it is the 1st ingredient in most cold meds....I dont knwo about allergies...he usually took care of his own bad response to trees!!! this is scary..... sorry you got your own things going on....no need to respond....
Kim had pretty bad allergies too, which sure don't help with the all the other things going on with PSP. She would do well on one drug for a while and then seems like it would stop working. So then I would switch to something else, which seemed to work for a while. So maybe try switching from Allegra to Zyrtec to Claritin.
Funeral was yesterday and everything went pretty well. No big blowups or feuds. Pretty much a cold shoulder from her side of the family, which was 95% of those who attended. Our side of the family has dwindled a lot over these past 10 years. Bought new locks for dad and changed all of them in his home. Can never be too safe.
My mother's temperature is up and down all day long and my brother is in a different room so we turn the heating off and on man's bed jacket is off and on and all the while my brother is freezing or boiling in his room so we've provided him with a heater and fan as well.
Yes my husband suffers from PSP and can have night sweats and also be very cold. I mentioned it to my neurologist and he said it is part of this horrible disease. Take care xx
PSP does mess with the body's circulation. My feet are often blue and I am forever removing blankets. I had a set of breathing tests done a short while back ordered by a respirologist. When we reviewed my results I was told that my lung capacity was good, there were no lesions or masses... all good news. However, when we discussed the lung function of taking in oxygen (inhaling) and expelling CO2? (exhaling) the muscles responsible for these functions (and swallowing) were only working at 38% and 42% respectively of what they should be, because they have been weakened from the PSP.
I would agree no documented evidence from medics but without doubt a part of psp. Rog has not had an episode for about three months as he has worsens, but logically temperature regulation is in the brain stem where they are being damaged.
My dad seemed to have this as well. We were adjusting the thermostat constantly. I didn't notice he had a fever or felt cold he was just uncomfortable.
Thanks so much to you all for taking the time to answer my question. Dad hasn't been as bad for the last few days, doctor thinks he may have had a slight UTI and gave him a course of antibiotics. It's a relief in ways that it is all part of PSP. Thanks again xxx
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Leaving body to research
New to the group.I'm new to this site. My lo was dx in August of 2017 with PPA and FTD, he then was dx with PSP in October of 2019. 
The cost of a day out!
