Please do not read if you are squeamish although I think most people on this site are pretty seasoned warriors when it comes to basic bodily functions.
Had to go to a clinic today for a neuropsych evaluation. We had to get up extra early (thankfully Sandy's caregiver was available to come over for a couple of hours at 6:30am to get Sandy up and ready so I could get myself ready to go).
20+ miles in rush hour traffic (it's always rush hour around here), hubby has a poo, crap (what's a nice word for this)? accident, get to the clinic where someone has blocked the access to the ramp. Waiting for them to find the owner of the car so we can get into the building. Both of us were in the public men's room in the clinic for a full hour dealing with the aftermath. Fortunately, even though we were 1.5 hours late for our appointment, they took us. It was supposed to take all day but after talking with and assessing my husband, the doctor said she wouldn't put him through that and would limit the testing to about 1.5 hours.
Now I'm not even sure why he had the test. The neurologist ordered it months ago and we just now got around to it after waiting a few months to get in. He says it will aid and affirm his PSP diagnosis.
Exhausting day. We still had some laughs. What else can you do?
We had a number of these public bathroom major clean up extravaganzas in the past until we figured out that it's best just not to go anywhere more than 15 minutes from home unless absolutely necessary.
We also took Sara Stedy along for the ride. She's the only way he would be able to use a bathroom anywhere. Just love that gal! She's the best.
Good thing I had just returned last evening from my first getaway in well over a year. Had fun and rest. Thrown right into the frying pan upon return. That'll keep me humble.
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journeyofjoy
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Know exactly what you mean! Had a couple of those experiences in the men's loo.
You don't mention the cost of the super valet clean for the car! We were on way out of the hospital carpark when the "noises" started. My love had just been for an MRI scan that required a special 'luminous' type dye in his concoction. Would advise the patient to wait for 'action' before going home!
Oh the memories 😱. We were having a day out by the sea the first time it happened. After that our days out were governed by the weather and whether C had ‘been’ or not. I even cancelled an appointment as an explosion was due, (it came) explaining why and the consequences, so they were really happy about giving him a later one. I love your post name, not sure if that trip was a journey of joy but I’m sure it will make you smile once it is a distant memory.
XxxX
Doctors love their useless tests. I think it makes them feel like they are doing something.
At least you were prepared for it. I haven’t taken Larry out to an appointment in over two years. It would be an all day production that would exhaust both of us. His having an unexpected dump would be figured in. I would need to take a change of clothing, a towel, toilet paper, disposable underwear with me.
I wondered if there would come a time when it no longer makes sense to go to the doctor. I'm sure we're getting there. We've had every test they can think of. I'd much rather spend that energy going out to coffee or something enjoyable. Our outings other than doctors consist of a rare trip to a coffee shop or to stroll around town in Sandy's wheelchair, or church. We need to do more of this while we still can.
If you don't mind me asking, how long has Larry had this? From your posts, I know it's getting much harder for both of you. I know it's hard to pinpoint because when symptoms start, they can be subtle and you don't know that it's actually something serious ahead of you. My best guess is that Sandy's symptoms started five years ago. The last 1.5 years have been like a runaway train - although he seems to have stabilized in about the last three months.
Learning what the symptoms are I would hazard a guess he started exhibiting symptoms at least 10 years ago if not longer. He couldn’t get through a meal sitting at table without dropping food on himself. I assumed he was clumsy. He is anything but graceful in his movements.
Then he started to rant like his father did. (I now know his father had something as well. He would sit and pill roll along with other symptoms of a neurological disease.)
His cousin Diane said that the ranting started ten years ago. She and her husband had moved to California two years before and had moved back. She noticed it on her return.
By August of 2013 Diane and her husband were telling us his speech was slurred. I didn’t notice that. We both tend to mumble. Diane’s mother, visiting at the time, was a nurse and told Larry to go see a neurologist. He did in September of that year.
A year and a half of tests with no results lead me to get a second opinion in 2015. That neurologist told us on the first visit atypical Parkinson’s then refined it to PSP on the second visit in May of 2015.
We did three more visits to neurologists every 6 months. It was getting harder to get him there and they had nothing to offer. When I stopped physical therapy outside the house I stopped visits to the neurologist as well. He hasn’t seen a neurologist in two years.
We now have quarterly visits from his primary care doctor. There is a team of four who rotate visits. The last visit was two weeks ago. At that time she said she would be back in a month. She is unfamiliar with the disease. Told her most doctors are.
I have been trying to set up palliative to hospice care. The first go round on that was a disaster. I now have another agency coming this week to see if they will workout.
I know I am on my own dealing with his decline. I am do the best I can. He would never get the attention he gets from me from someone else.
Thanks, Jeff, for sharing your story. It seems everyone's is different. It also sounds like you have a good handle on caring for Larry. Hopefully you get a break once in a while. We are looking into palliative care now.
Well if you don't laugh about it you would surely break out into full decibel sobbing. It's such an uphill struggle to attend these appointments and you think afterwards "was that all worth itwhen there's nothing they can say or do to hep" Keep up the good fight it's all you can do at the end of the day!
The whole situation is so ridiculous, you just have to laugh, and hopefully not hysterically. We are capable of much more than we think. I never would have believed I could do these things for my husband, but here I am. And thankful that I can take care of him. It's just hard, some days more than others.
After I lost Ben I had a strange sense of pride that I had somehow managed to hold it all together to help him on this terrible journey, I still do 16months down the line. Xxx
I get it! No one can continue to be squeamish even if they were before this all started. Glad u made it thru. Did u get a good deal on tbe Sara Stedy. I love it, but its way expensive here in US. One more question do you happen to know what a standing frame is, and if so do you have one? That's also an expensive item here
The Sara Stedy is very expensive. I happened to get a deal on it through someone I know (although still paid $2000) but I would have paid full price if necessary. I would not be able to take care of Sandy without it. It allows me to transfer him without straining myself in the least. And, it's a fraction of the cost of one month in a care facility.
Where do you live? We don't get much help in the U.S., that's for sure. I don't know what a standing frame is. I do know that Medicare covers a "sit to stand" device but it's a lot more cumbersome than Sara and you have to use slings etc. Sara fit into our house much easier. I speak about her like she's a family member but I'm telling you, I thank God every day for her!
Yes I was introduced to Sara during an April hospitalization for my husband I went crazy over it they looked it up it's $3,000 I tried to find a used one they just don't come available very often If ever.
I never found one looked for one online did find one for I think 700 I can't remember. Then I just got busy I just I can't keep up it is constant I'm about to have a nervous breakdown and I have excellent in-home care it's just that I do help too and I don't get a break.
Hi Boyce3600, You can get much cheaper stand assist devices than a Sara Stedy although they may lack a little of the functionality. We used a Lumex which was about $500 and it worked perfectly for us. The easiest way to see what's available that might work for you is to search for them on Amazon. Like Journeyofjoy, I loved ours and said many times that it was the best $500 I spent to accommodate my husband's illness. It solved so many of the problems we were having with transfers and we never had another fall. Hope you can find an affordable one that will work for your situation.
I agree with racinlady. A Lumex seems great for a fraction of the price. You just have to carefully measure everything no matter what you buy to make sure it'll fit around your furniture, toilet, bed etc. and do what you need it to do.
I looked at the Lumex and would have bought one in an instant but it wouldn't fit around my husband's recliner. At the time, he was using his lift recliner several hours a day. Now, however, the recliner doesn't work for him so the Lumex might have been just fine. The Lumex is definitely worth considering before spending the $$ on Sara.
We r scheduled for a 45 minute liver sonogram tomorrow. Never knew a sono could take that long. He has to fast so hopefully no surprises. I stay an anxious ridden nervous wreck who does have high decibel level sobbing when no oe else is around. Its a very lonely existence.
I feel for you so much! It's one of the loneliest journeys and at times it seems that no one in the world understands the grief and sorrow you go through.
But this is a great group. It's nice to know that there are others going through the same or similar things. You can do this. Hugs to you!
Why does he have to have a liver sonogram? Is this for something other than PSP? It can be a lonely existence. I do try to keep up with my friends and family as I really need them now and absolutely will need them later if I'm alone. I hope you are able to socialize and have some time with others, not just your husband. I just had a few days away (the first in a long time). It was so good to get away and I was ready to come home.
liver sonogram was normal Dr feels elevated levels are due to Baclofen. He is med sensitive only takes 20 mg total in a day spread out over 3 doses. Did discover multiple gallstones we were unaware of
Oh I am sorry but that made me smile and laugh too, I know it’s not really funny but as we all know we have to find something to laugh about. It also made me remember some of the funny episodes I had with my dear Steve. No toilet/room is big enough to deal with it all and I sometimes wish I could have seen myself trying to help Steve sometimes literally having to crawl on the floor to reach something or move his foot etc etc It also makes me think everyone on here is simply amazing. I hope you have a cleaner quieter day today
My husband, who has PSP, has started having bowel control issues. A few weeks ago, he didn’t make it to the toilet, and tried to cover it up. I knew something was wrong, so I knocked on the door, said I was coming in. I put him in the shower, then proceeded to clean up the mess. He was quite embarrassed, but I tried to assure him that he shouldn’t be.
I was rendered speechless when, after a long useless appointment, the Parkinson nurse said brightly to Chris " Well its nice to have a day out ! " She has no idea- - -
I still have the emergency bag of wipes etc in the car.
I have moderate Crohn's Disease. I don't think my wife is prepared for what that means to outings or even home care. Most days I'm 2-4 times but in a major flare..... Well my highest count of trips to the toilet for a 24 hour period is 26.... I sympathise for you and can only hope my wife finds "joy" in the extra caring I may need. Here is to hoping for a bit of constipation for me.
Oh how I remember those issues. Had to go through it so many times. My wife was always upset when it happened saying I shouldn't have to do it. I always said I would Wade through it to help her. Thankfully she is free of it all now but I miss her so very much. Keep on keeping on. God Bless. ♥️
Sounded like a pretty normal day for a PSP caregiver!!! We don't have a Sara Stedy, as I'm still able to assist my wife with sitting on the pot. Since she has trouble getting her butt all the way down onto the toilet, we got a portable extension seat. I used to keep it in the bathroom, over the potty. But, more often than not, we still couldn't get there in time. So now I move the portable potty to where ever she'd located. Living room watching TV -- doesn't matter. All I have to do is stand her up, turn sideways, drop the Depends, and move the pot under her. Voila!! Far fewer accidents lately.
Our change bag for outings grew and grew, disposable gloves, apron changes of clothes, bin bags the list grows!!! Like an industrial size baby change bag!!
Yup. We've got one of those large supply bags as well. You only have to have your first accident that you're unprepared for....and next thing you do is get that bag into the car with every imaginable thing you might need.
Been through all that its horrible but tomorrow is another day just hope it will be better. You spoke about Sara steady my husband has one and I cannot imagine life without it but OT want to take it off me as they say it's no longer safe for him to use and now have to use the hoist. they will have to break down the door to get it.
It IS a big piece of equipment, not meant to take along. The only reason I took it is because there's no way my husband could get out of his wheelchair and onto a toilet without it. Because of the lengthy test, we took it. It barely fit into our mobility van. I don't plan to ever take it along again. A big hassle. We got this test out of the way and I don't intend to sign him up for any more.
Have you looked online at the Sara Stedy? It's a wonderful device for transporting in the house from one place to another. As Pat has said, the "Lumex" is another very good option that does the same thing at a fraction of the price. You just have to see what works for your house and what you need it to do.
Let me know if you have more questions about Sara. It's worked out beautifully for us, although I have to say my husband leans so far to the right that it's hard for him to get his hips inside so we can close the flaps. He has to work at it.
FYI - I purchased two Lumex Stand Assist vs the higher prices brand that Sara calls for —— we use one at home and our lake house —— life saver for us!!
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Top of the morning to you 
mum was told august this year she has psp
Fall
