Confused and frustrated

[Folliott]

Everyday seems to get worse. Jim has gone from totally independent for toileting to incontinent in a matter or weeks. He is now needing help getting in bed and out of bed. Getting to the bathroom and moving at all without help. Is it normal to progress so quickly in a matter of 2 months to spend 80% of time in bed. I am waiting till tomorrow when he goes into the ADP program for the first time. I only wish I knew the progression of this terrible disease. He was diagnosed with Parkinson's in 2010 at which time I thought that his symptoms just seemed to progress too quickly from what I read and saw of Parkinson's but no one seemed to listen. At that time he was struggling with perception and his sister insisted it was Alzheimers which i argued that it was something but not that. He had short term memory difficulties but not anymore that any man has. He had had a triple bypass and a valve replacement and never came out of that surgery the same. He is now incontinent and has difficulty with being able to clean himself after a bowel movement to sleeping constantly. He has difficulty chewing and eating and walking needs many cues and help. Is it normal to progress this quickly and now what can I expect. It is the unknown that is most difficult and not knowing how long I can cope. Venting is good.

[NannaB]

Urine infections can make symptoms worse but if no infection they can still dip suddenly. My husband can go a few weeks, months on an even keel and then suddenly dip. He can then continue on a plateau, lead me into a false sense of security, only to dip again. I met with a group of friends tonight and one said how it was only about 4 1/2 years ago that Colin had gone with them to Belgium on a coach while I was at work. He didn't stay with them all the time, found his way round Brussels and back to the coach time. Now he is fully dependant, needing 24 hour care, doubly incontinent, can't walk, speak, blink, etc etc. Everyone is different, progressing at different stages so just take each day at a time and deal with challenges as they occure. Venting is good and most of us cope somehow but if you don't have help yet, get some. You need regular breaks during the week with time to do things you want to do.

Best wishes.

Nanna B

[Folliott in reply to NannaB]

Thanks. This is a good sight to follow to get info and now encouragement. I do have someone in 1 hour a day for showers and dressing and tomorrow will be first day in Adult Day program. hopefully he can stay awake long enough to get there. Ha Ha.

[jzygirl]

I agree with NannaB infections and also stress can make symptoms worse. It does sound as if jim could be depressed and that will make him worse because he could be thinking that everything is to much trouble. Last year in a month Brian went from being able to walk with assistance to non walking but he can still weight bare so thats one positive. Brian does suffer with fatigue he has a sleep after being got up and eating does tire him out.

i was told that fatigue and depression are symptoms but are very often overlooked. Janexx

[cabbagecottage]

so many many symptoms . so disappointing when they slip off the even keel Nanna .

you have one of the not so bad days , never any good ones now . Turn round and they are switched off again .

[Heady]

Hi, it seems a lot of people with PSP, when they have surgery, for what ever reason, don't ever really recover. My husband had a knee op, it was after that things went down hill, which lead to diagnoises! He had had a stroke before then, so we presumed all symptoms were because of that.

Is your husband getting any physio? Mine goes to a exercise class with people with Parkinson's, they do some multi directional exercises. They are brilliant. S suffers big time, if he hasn't been for a while. Like now, been away for two months! Every thing goes down hill, speech, incontinence, not just his movement! I am hoping he will regain some of this, now we are back and classes have resumed.

I think we would all like to know the progression of this evil disease, but that's tomorrow's worry. Got enough challenges getting through today!!! Remember one day at a time.

Lots of love

Heady

[jimandsharynp]

We must remember, PSP is NOT a one-size-fits-all disease. Patients are usually different in some respect. They can bypass symptoms that many other patients suffer from. They can have symptoms few patients ever experience. Some patients seem to go down hill faster than others. It is the unpredictability of PSP that is so frustrating. I have a list of 30 symptoms reported by PSP patients that my dear wife Sharyn didn't ever have to suffer.

Having any type of surgery that requires sedation of the patient can set PSP and other dementia disease patients back and make them worse. Even surgery with sedation for anyone over the age of 70 can do the same even if they don't have PSP. Don't believe me? Google "Surgery over the age of" and check the results. It's my opinion that PSP patients should avoid surgery unless it is life threatening and needed desperately.

Jimbo

[shasha in reply to jimandsharynp]

HOW INTERESTING JIM - ABOUT THE SURGERY

[Sashagirl]

My husband was diagnosed having PSP 6/13; however, I started noticing behavioral changes at least 7 years prior. A fall casused a hip fracture in 11/13 & after sedation there was a BIG change in his behavior....he became paranoid & delusional. He was constantly accusing me of being with another man. He was gradually put on several meds: lexapro, seroquel, aricept, sinemet, mucinex & a couple inhalers for his COPD.

He is a medical doctor & does not wish to take drugs. Last Nov he was refusing to take all meds. His doctor & I put him on the Skilled Nursing floor of our retirement home for a couple months. Now he's only on 1-1/2 sinemet 3/day & 25mg seroquel 2/day, plus his inhalers & decongestant. Lately the delusions & paranoia seem gone. (If they return, the docs will have to medicate again. IT HAS BEEN A ROCKY ROAD. Each day can be quiet different. He can barely communicate & mostly looks like he's drunk. He has so much mucus that he has a terrible gurgley, moaning cough. I don't know if this mucinex is helping. He sounds awful. At present he is incontinent, has to be cleaned after bowel movement, mostly has to have help getting up & down, help with dressing, stays in bed 80% of time. I'm sure he's still depressed, but the anti-psychotic & anti-depressant drugs make him too loopey. I now have help 2 hrs/day 5/days per wk 9-11:00am. Helps me with changing linens on his hospital bed, bathing, shaving, laundry, etc. He has fallen many times even though he likes using his walker. Has had many bruises & only the fractured hip. We used to have so much fun.....now, he's never happy & likes to use the accusatory word "you".

This website is so very helpful. I've learned a lot plus it's nice to have confirmation of these horrible symptoms.

[Folliott in reply to Sashagirl]

He just had his first day care program on Wed. and seemed to enjoy it. Better than looking at me day in and day out. It seemed to stimulate him a little. It looks like a long rocky road. I am thinking of you and how hard this disease is. Different dfor everyone.

[jillannf6]

hi a lyes this `PSP is not a one -size- fits- all disease like JIM above says..but it does not mean that the help and info given on this site should be ignored by anyone.

it is the best way of finding out what to do about a particular problem or even jus t a good place to vent if you r having a bad day !!

wee all understand what u r going thro' whether a PSP person or a carers plz bring your worries here and we will try and help u

i shall be away next week in N YORKSHIRE (MY FAVOURITE PLACE TO BE ) AS IT IS MY "HOME" and may not have access to the internet but i shall b back on tuesday 12 MAY

;lol JIll