Hallucinations

[karyn38]

Hi all, my mam has p.s.p and although she hallucinates and gets very confused whilst she has u.t.i, she also hallucinates when she doesnt.. she see's things out of Window or will be adiment my daughter has been in bed with her all night and kept her awake kicking her in back.. we thought it was down to meds but reading other posts maybe not.. xxx

[ketchupman]

Correct, my wife (age 53) who was diagnosed with PSP 5 years and is probably in her 6th or 7th year with the disease, has been hallucinating more and more. She often insists that one of our two adult children are in the house and laying on the sofa. Early on when she was having severe hallucinations, we determined she also had an active UTI taking place. But she continues to have these hallucinations, even when no UTI is present. It can be very frustrating, as she's pretty insistent that they are in the house. I often have to get take her over to the location where she thinks they are and prove to her that they are not there. She often thinks there is a baby (our granddaughter) crawling on the floor. My wife was getting a lot of UTI's due to have a Foley catheter inserted. While the Foley is a Godsend in that it keeps her dry and allows other caregivers to take her to the toilet to empty the Foley bag by just rolling up her pants leg, it was often the frequent cause of UTI's. She had to be admitted to the hospital 3 different times during the past 6 months due to their severity. I finally gave up on the Foley and now I straight cath her 5-7 times a day using a hydrofilic catheter, which is less likely to cause a UTI, although they are 5 times the cost as a regular straight catheter.

I sometimes think it's the meds as well, and have started and stopped various ones numerous times. Her memory is starting to fade more and more, and she's talking less and less. What a horrible, mean disease. Always praying for a cure.

[karyn38 in reply to ketchupman]

Hi ketchupman.. my mam also had catheter fitted but due to the muscle spasms her body kept on expelling them so just under a week ago she had superpubic one fitted.. also like your wife my mams symptoms began 5-6 yrs ago but only diagnosed 2yrs ago (just kept sayin unknown neurological problem) but to say she has deteriorated this last year would be an under statement, and yes your right its an awful, mean illness.. it kills me watching her go down hill so rapidly she is only 58 and you just think why..? She has not long ago had a peg feeding tube put in aswel.. and can just barely weight bare now so in specialised wheelchair.. she is currently having a stay at the Marie Curie centre where they are doing Pain Management and trying to get the right level patches to keep her out of pain rather than her constantly taking oramorph.. I hope you and your wife have many more years together and il pray with yous for that cure (maybe one day eh) we can live in hope.. ((big hugs)) to yourself and your wife, take care xxx

[ketchupman in reply to karyn38]

Wow. So similar it's uncanny. An yet we're probably a half a world away (we live in Louisville, Kentucky in the USA). This is a disease that often appears in men in the late 60's. For it to attack a woman in their late 40's and early 50's is truly rare (from all the research I've done). My wife started losing a lot of weight due to swallowing issues about a year ago. At the beginning of this disease, she weighed around 185 pounds and within a year, she was down to 120. Last August we had a PEG put in and it has been a true blessing! Within a month she was up to 135 and has been hovering at that for the past 9 months. I am 100% in favor of a feeding tube, as long as the patient is not suffering. She has finally got to the point where she shouldn't take anything orally due to the potential for aspiration pneumonia (which she has done several times in the past 6 months). I still allow her to have some nectar thick water and I sneak her a few Hershey Kisses from time to time. If it wasn't for the PEG, she would have been dead months ago.

My wife also has a degenerative disc in her lower back (L4/L5) which causes pain in her right leg/foot. A year ago we tried Stem Cell Therapy ($15,000 at a location in Florida). It didn't seem to do a thing for the brain and this disease, but they also injected some of her Stem Cells in her lower back. After about a month ... no more pain in her leg/foot. Praise God! For that alone it was worth the money, as she suffered a lot and was getting frequent epidural treatments to reduce the pain, along with taking a lot of NSAIDs.

Speaking of NSAIDS, she is currently taking Salsalate (an NSAID that is at your pharmacy) to see if it could fight this disease. I found out they are about to begin a clinical trial in San Diego, California. Instead of flying out there multiple times to be monitored and get the prescription, we went and saw our primary care doctor, who prescribed it for her (1500 MG in the AM and 750 MG in the PM). Been on it for a month now and haven't seen any improvements yet, but plan to continue. Relatively inexpensive and worth a shot. As long as I make sure she has her feed on her tummy when I administer it, it doesn't seem to bother her and cause any stomach issues (as some NSAIDs can cause).

As for wheelchairs, we've tried several (power chairs, scooters, and manual ones). Due to her poor peripheral vision, she could never operate the power chairs and scooters very well without running into things/people. When she was using one at the grocery, look out! We used the U-Step walker for a long time which minimized some of the falls. But now she just uses me to ambulate from bed to chair to car, etc. We use the traditional wheelchair when we go out to the grocery, church, etc.

God Bless you and your mom! Have a great day!

[karyn38 in reply to ketchupman]

Ohhh the similarities are unreal my mam was about 15 stone a year ago and now about 10.. and she was the same with the scooter and electric chair she wud clear the ailse in seconds.. and her eyes are really sensitive she has the large dark glasses to wear but often has episodes of blindless.. can I please ask does your wife have episodes of being quite nasty not wanting to sound horrible.. but sometimes my mam can be quite harsh with my kids maybe coz she thinks shes said something but either hasnt or they havnt heard her with her speech being slurred/quiet and she gets really angry. (Which isnt her) its heartbreaking and such a terrible illness.. about 15yrs ago she was diagnosed as having a stroke and her face nd left side were droopy and slurred speech which took a long time to come back. But on having mri scan looking for problems this time (psp) they said there was no trace if her ever having stroke ??? She also has a sublux shoulder which causes her alot of pain and makes hoisting etc alot more difficult.. I still can't believe the similarities and yes were miles apart we are in the north east of england. Xx

[ketchupman in reply to karyn38]

Yes, she went through that phase, but now she's to the point where she rarely speaks. She would often blurt out things inappropriate. Prior to this disease, my wife was very active and outspoken (she was a hair stylist, so I guess it goes with the job). But she was always able to apply a filter. Then, early in the progression of the disease she began saying things inappropriate and sometimes insensitive. It wasn't until later after researching PSP did I make the connection and that tells me a little more when she started coming down with PSP.

Hope you have a great day!

[mthteach in reply to ketchupman]

We looked at getting the U-step walker, and it cost 1000.00. We decided to wait. My husband us using a regular walker given to him by a relative for now.

[LynnO in reply to mthteach]

I bought a U-step walker about a year ago for my husband it was $560.00 (U.S.) and was partially covered by our insurance. Well worth the money for us. The regular walker was very dangerous for him to use. His legs would stop moving, but the walker kept going! Maybe you could find a used one in good shape somewhere.

Lynn O

[jimandsharynp]

Possible causes outside PSP are UTI infections and mix of medications being taken IMHO Jimbo