POLL: Possible First Warning Signs?

[GonnaMissDaddy]

Daddy has had symptoms of PSP for as long as 9 or 10 years, he's now age 81, but he wasn't correctly dx until last year, 2015. I often look back and try to discern what may have been early symptoms. A possible first was several years after he retired at age 65, when I'd come to visit he'd greet me and still be having a conversation with me but all while he continued to play his card game online, which he'd do for hours each day while his wife was working. I thought it a little out of character that he didn't show more interest in me, and a little rude but as the obedient daughter, refrained for commenting about it. In retrospect, knowing PSP can cause lack of impulse control and can cause the person to be fixated on things, makes me wonder if that was our first clue. Then about 8 years ago, he was helping my friend build a greenhouse, he was in the back of a slow moving pickup truck alone and fell out head over heels. He was never a kuitz, so I know this was early PSP symptom.

Since that time, he's now only able to manage a few steps per day, with help, to transfer from hospital bed, to wheelchair, to lifting recliner, and he still stands to urinate during the day but barely, and no longer at night as he was having too many hard falls, falling like a tree, with a reaction time too slow to ever break his falls. Mentally the worse he's been was due to having a UTI, and I'd have never figured out (I'm one of his 2 fulltime caretakers,) that the UTI was causing dementia especially at times he'd wake during the night and be very unreasonable, IF NOT FOR THIS VERY INFORMATIVE FORUM!!!!! Thankfully ever since he's been recovered from the UTI, he's been generally reasonable even when he wakes during the night.

I wonder too, about the excessive mucus or phelgm which was present all his life, as it has been all my life, although I go to great lengths to HIDE the problem. Daddy smoked 4 packs of cigarettes a day for years, but even after he quit, decades ago, he still had to constantly clear his throat. I smoked 1 pack a day for over 30 years and have been quit for 6 years but still have more mucus than is normal. I always figured it was because I was like my dad but NOW I wonder, am I like my dad in that I could end up with PSP too if I'm fortunate enough to not die of something else first, (being I'm a cancer survivor). SO, DID ANYONE ELSE REMEMBER THEIR PSP SUFFERER HAVING EXCESS MUCUS LONG BEFORE OTHER SYMPTOMS WERE PRESENT?????????? And / or, what WERE probably the first warning signs, now that you see it in RETROSPECT?????? THanks dear folks, and may you all be blessed throughout this new year. Please know you're all in my prayers.

[Folliott]

Yes. My husband Jim had the excess throat clearing for 10 to 15 years before the disease was diagnosed to the point of being most annoying. He even started to spit when out in public which I told him was disgusting and to spit into a tissue. He passed in Nov. 2015.

[abirke in reply to Folliott]

The mucous thing has only been this last year and even since mid summer. B was diagnosed in 2013 though signs started in 2011 or earlier...

smokes 6 cigs a day.....

AVB

[GonnaMissDaddy in reply to Folliott]

I'm sorry for your loss, and thank you for answering. It's really nice that you come to this forum even though you're no longer dealing with it, obviously you're here at least in part out of empathy for others of us. Your husband was blessed to have you, ya know.

[shasha]

I TOO WAS DXD LSATE I GOT A PD DX IN JAN 2919 AND A COFFECT DX IN NOV 20

13 SO IT VERY COMMON - ALL I KNOEW IS I WISH IT WAS PD AS THERE ARE SO MANY DRUG THAT THAY CAN GIVE YLOU

[NannaB in reply to shasha]

hi Shasha, how are you doing? You are in my thoughts often.

X

[shasha in reply to NannaB]

HELLO NANNA B HIW KIND OF YOU TO SAY THAT PARTICULARLY AS YOU HAVE SO MUCH ON YOUR PLATE !!!!

[GonnaMissDaddy in reply to shasha]

Hi Shasha! in your pic you look way too young to be dealing with this horribly challenging illness. I wish Daddy had PD for the same reasons you said, there are treatments. If PSP is so rare, would this forum be so active, and is it becoming more common? It's such a shame there are no treatments YET. Keep smiling Shasha, and I'll try harder to make Daddy smile more often too.

[shasha in reply to GonnaMissDaddy]

THANK YOU FOR SAYING THAT I KLOOK YOUNG - I WAS 65 AT THE TIME AND AM NOW 69 SO IN DO LOOK OLDER !! MY LOVE TO YOU AND DADDY

[quickjel in reply to shasha]

Hello Shasha, I read your post having just returned from a 50th wedding party of a friend who was diagnosed with PD 7 or more years ago and whose symptoms have been so well controlled you would never have known. I learned recently that he had commented to a mutual friend how relieved he was to be diagnosed with PD, being aware of the progressive and distressful nature of PSP. He had visited us on the day of our 50th wedding anniversary and Margaret died less than a month later.

It had never occurred to me that a diagnosis of PD could be good news? Your post, coming so soon after watching the chap dance the night away, brought it to mind.

Like NannaB I read the posts daily and think of you folks ‘living with’ PSP frequently. I’m told ‘suffering from’ PSP is not PC, but it sounds closer to the truth to me.

Kindest regards and very best wishes, Jerry.

[shasha in reply to quickjel]

DEAR JERRY

THANK YOU FOR YOUR KIND COMMENTS

[NannaB in reply to quickjel]

When we went to the neurologist for the diagnosis after C had gone through a battery of tests, the neurologist had my long lost of symptoms in front of him, forwarded from our GP. He asked me if I had any idea what was wrong with C. I replied that Parkinson's disease seems to have similar symptoms so I thought it may be that, although C didn't shake. When he said, " No Mr H, you don't have PD", we both smiled and breathed a sigh of relief. That relief didn't last when he proceeded to explain what it was and what the outcome would be. A day I will never forget, for all the wrong reasons.

X

[Amilazy]

M did not smoke and did not get mucus before PSP, though I do but again non smoker but worked for a while in smoky environment so may be something to do with tobacco smoke, that causes mucus build up and not PSP. Sorry do not think it is an advance symptom but in the PROSpect -M survey they do have a lot of questions on smoking history so may be they are checking this out in the questionnaire.

Best Wishes Tim

[GonnaMissDaddy in reply to Amilazy]

In the preceding couple months before I dared to stop smoking I researched the dangers and read that smoking tobacco changes every cell in the body. Cancer is a form of cells changing in an odd way, so, that's made me think for years cigarettes can cause all kinds of cancer anywhere in the body. Just the possibility that smoking tobacco could be linked to psp is over the top crazy, but there it is, you said a psp survey asked lots of questions about smoking. Where is this survey TIm? I'd be interested in taking it for my dad. Thank goodness the powers that be have found PSP to be the possible answer to it AND alzheimers and etc since PSP only affects part of the brain not all and for some reason I don't recall off the top of my head, that makes it a great thing to research to find answers to all the brain illnesses. A nice, fast breakthrough in the research would be so SO nice.

[Amilazy in reply to GonnaMissDaddy]

Hi the study is a UK based study at UCL hospital in London. It is initially a broad based statical study to try and get a handle on any common factors which predispose people to PSP/CBD and MSA. Based on detailed questionnaire and blood samples (looking for genetic markers). Expected to run for 5 yrs so doubt results will be available for some time.

I think one of the reasons PSP is investigated is that it seems to be caused by the tau protein which is culprit for Dementia in brain cortex. PSP has advantage(??) for research is that it is restricted to one small but important part of the centre of the brain.

Lots of similar studies in the US no doubt someone will point you to where to look.

Best wishes Tim

[kryste]

The mucus is the worst thing of all the symtoms I got Aunt Bev a machine to suck out her saliva because its so hard for her to cough up and when (sorry I know this is gross)

but when I clean it out It is so long and rope I dont think even I could cough it up I have never seen anything like it. I hope things go well for you I too am a full time caregiver for my aunt she can no longer do anything but eat and drink by her self only her arms work we have the tube for bad days so I make sure she gets protien .Good luck my prayers are with you and no matter what keep your dad smiling it will mean a lot to you in the end.

[GonnaMissDaddy in reply to kryste]

Thank you Kryste and bless you for being a caretaker too. I'm sure your dear Aunt is blessed and happy to have you there by her side. Tell me, how did you know it was time to use suction? Daddy clears his throat a lot and when he eats, this too is gross, but it comes out his nose like you said long and ropey, and he has to use napkins to wipe his nose several times during a meal. If he wasn't handed a napkin to use, it would be mixed into the food going into his mouth so yes that is gross. I guess I hadn't imagined needing a machine until if and when he can no longer sit up and is bed-bound, which would create mucus in anyone. I hope that never happens but then I hope a lot of things. How did you know it was time to use a machine or was it the doctor who knew? Our general practitioner is the main doctor and he doesn't seem to know a lot about PSP.

[ketchupman]

My wife, Kim, never smoked, although she was around her dad in her early years, who did smoke. She really doesn't get a lot of mucous, but her saliva does build up to the point where she starts gurgling, which is when I use the suction machine. I think anyone who is in their 4-5 year of PSP needs to have a suction machine handy. We used to use ours only a couple times a month, then weeks, and now days. In the USA, our insurance covers the rental of the machine and after 13 months rental, you own it.

It's hard to tell when Kim, age 54, came down with this. Early symptoms were similar to PD but without the tremor. Frequent falls, lack of arm swings, terrible hand writing, soft voice, and compulsive behavior. Later came the backward falls, the incontinence, and eye problems (looking up and down). And much later came the severe swallowing issues, which we combatted via a PEG feeding tube. Now, it appears that she is in final days/weeks. Fever suddenly spikes and then goes to normal. Heart rate accelerates and then normal. No longer whispers. Weak in legs/knees, so much harder to ambulate. No longer able to keep her head held up. I'm sure if she aspirates or acquires a cold/virus from family and/or hospice staff, she will have a hard time fighting it and will succumb to this cruel disease.

I thought her initial PD diagnosis was horrific, but I'd trade it in a heart beat. I know PD is no picnic, but PSP has to be many times worse.

Prayers and love to each of you fighting PSP,

Ketchupman

[pipperscott]

I lost my husband to p.s.p. One of the first signs something was wrong was the continual runny nose plus he would drool later. As he progressed he lost all control of body functions. All symptoms differ but same. My husband could talk until two weeks before he passed.

P.S.P. is a devastating disease. Yes, mucus is a big problem. As you, in retrospect there were many symptoms but I had a hard time with getting the correct diagnosis.

Bless you and prayers. I was told that there is only a small chance it is inherited and as far as I know there was not any member of his family that did. Taking care of yourself

is important. Take care please