Friday 6/26/26
This post has taken me a while. Sometimes I am not sure why I do it. Having had parents with neurological problems later in age, I do know that it is not that friends and family don’t care; it is just a difficult thing to talk about. You come up with excuses not to talk about it or contact the family member. It’s not an easy thing to talk about. Susan had many, many friends, clients, and associates in the area. They would probably tell you they never saw her without a smile on her face. A good portion of my followers who never met Sus feel like they know her. As I said, over the last few months, the majority of the emails I have received have been about her. That and people who say they appreciate me using my platform to talk about these difficult, misunderstood neurological diseases.
To prepare, I reread my update from last year, 7/23/25. I had not read it since I posted it last year. The first thing that stood out in my mind was, I wish it were still like it was back then. If you want to refresh your memory or are new and have no idea what I am talking about, here is the link from last year. Susan and Jeff Personal Update No Weather
The only thing that has gotten better since my post last year is that she has settled into a healthier weight range of 98-102. This does not mean she is getting better, far from it. I think the weight gain is directly related to my changes to her medications and dosing. Too much of her primary medication led to uncontrollable movements, not gentle; it was as if she were exercising all day and most of the night. She was mostly muscle. She still is, but 90% of those uncontrollable movements no longer happen.
Back then, they had her on 6 to 8 pills of the primary medication used to treat Parkinson’s Disease. 4 to 5 were “immediate” release, and 3 to 4 were extended release (I use that range because that was how it was prescribed, “as needed”). She was on three other pills in the morning, indirectly related to her primary medications. She was in extreme stomach pain every day. Docs told me her crying, “it hurts! it hurts,” was just her way of expressing discomfort, not necessarily related to her stomach.
After some research, I found out that this particular medication has caused extreme stomach pain in some patients. I also found out it lowers dopamine levels. Parkinsons patients take Carbidopa-Levodopa because their brain can no longer produce dopamine. Carbidopa-Levodopa is taken to stimulate dopamine production. So she was taking a pill to stimulate dopamine, and another that had the side effect of lowering dopamine levels. To be fair, I also learned it is a pretty common treatment to take both medications. Either way, it was not working out. I weaned her off that medication. She has not had that stomach pain since (9 months).
Circling back to the original prescription of 6 to 8 pills, there was another pill that helps extend the effects of Carbidopa Levodopa. She took this with 3 doses of the instant release during the day. After more research, I learned that people absorb medications at different rates, which could affect not only the base medication but also the other pill’s ability to extend its “benefits”. So we had different medications entering her system at different times. eventually they would all overlap, causing the “overdose” and extreme dyskinesia.
Another pill I weaned her off “could cause psychosis in some patients”. Understatement of the year. Shortly after taking that one, she would get very paranoid. Interestingly enough, she could speak very clearly during the episodes. It was common for her to look out the curtains from the sliding door to the backyard. I would ask her what she was doing. She would say she was looking at the people in the backyard. I would try to explain that it was just the medication (of course, I must admit I would look out there first). She would often get her phone out and try to take pictures of the “people”. One day, I went to the bathroom and came back to find her trying to get out the back door. I was asking her what she was doing as I was wrestling with the door. She said, “I have to talk to them”. So I weaned her off of that one as well. No extreme episodes since.
She is only taking 4 to 5 of the original instant-release Carbidopa Levodopa, which seemed to be the magic number, but things have changed a lot in the last 30 days . Up until that point, I would wake her up in the morning, give her a pill, and about 30 minutes later, she would walk out of the bedroom and sit down on the couch. Now, she falls right back to sleep after the pill. A couple of times in the last week, the pill (or something new) has resulted in mild to moderate psychosis. I was making her breakfast when I suddenly realized she was not on the couch. I walked down to the living room, and she was sitting on the floor underneath her TV tray. Anything I said to her, she looked pretty distant or just could not process what I was saying. Dime store, Monday morning quarterback, psychology led me to believe she associated being under the tray as “safe”.
Reading the last set of doctors’ notes, they were no longer calling her disease Parkinson’s. They were referring to it as Atypical Parkinsons, or falling “under the umbrella of Parkinsonism.” Lately, the “speculation” (perhaps hypothesis is a better term) is that she has a rare (of course it is) disease called Corticobasal degeneration. Here is the short, straightforward definition for you: Corticobasal degeneration (CBD) is a rare, progressive neurological disease characterized by nerve cell death and the buildup of abnormal tau protein in the brain. Symptoms typically emerge between the ages of 50 and 70 and include severe muscle stiffness, loss of coordination, and cognitive decline. Key Facts About CBD Primary Affected Areas: CBD damages the cerebral cortex (outer brain) and basal ganglia (deep brain), which control movement and thinking. Symptoms: Often begins asymmetrically (affecting one limb more than the other). Common signs include difficulty coordinating purposeful movements (apraxia), muscle stiffness, jerky movements (myoclonus), speech issues, and dementia. Diagnosis: There is no single blood or spinal fluid test. Diagnosis requires a physical exam, medical history, and brain scans to rule out other conditions. A definitive diagnosis can only be confirmed via autopsy. There is no cure.
So many of the things she used to struggle with doing are things that she can no longer do at all. They include reading, writing, telling time, and using a computer, phone, or tablet. Obviously, she still cannot dress herself. It is a big chore to dress her because of the rigidity of her arms, hands, and feet. With pants, the right foot tries to sneak in with the left foot into the left pant leg. With pullover shirts, both arms naturally pass through the neck opening. You get one separated and into the correct sleeve, then, while you’re trying to get the other arm in, she pulls out the one you thought you had just secured through the sleeve. This rigidity has gotten much, much worse over the last few months. Her right arm, I have to keep an eye on because it can be dangerous to her and me. I know this is going to sound completely ridiculous, but her right-hand grip strength is superhuman. She is so weak, yet if that hand latches on to my arm, she squeezes so hard that her fingernails can draw blood on my arm.
She still struggles with incontinence, but I think I read adult protection is now a $30 billion market, so it’s not unusual. I do have to help her in the bathroom. A lot of it is because she has no control over her right hand and struggles a lot with her left hand these days. Pretty difficult to get toilet paper off a roll when you can’t grasp the sheets. In the last month, the bathroom situation has gotten worse because she gets mixed up about the order of steps when she is done. The other day, I was sick, and she got upset when I went in to help her. When I checked on her, she got her pants off but forgot to pull down her protection before sitting down, so it all stayed there. I hope nobody ever needs this tip, but scissors in the bathroom let you quickly remove the protection.
About 9 months ago, she was diagnosed with PBA, which is another neurological condition that prevents a person from controlling their emotions. In her case, it has only been crying. To the point that there is no consoling or comforting her. It is yet another of those misunderstood neurological conditions. This used to happen a couple of times a day, starting in the afternoon. All of these things used to happen within a set window each day. It started at 2 pm. Then at 12 pm. Then 10 am (which was why we could get her hair cut in that window). Now, it can start after she has been awake for 30 minutes.
For quite a while, 18 months or so, she has experienced sundowning effects in the afternoons. I am not sure how it is related to the PBA, but she gets very upset/scared, and paranoid. It reminds me of the child who does not want to go to sleep. She will say, “Help me”. I will go over to her and there is nothing wrong with her, but she does not want me to leave.
The only good thing is when one of these behaviors happens, the psychosis, the PBA storms, the afternoon child-like reversion. She has no memory whatsoever of them happening. I assume that the same disconnect neurologically that causes the behavior keeps her from remembering.
The biggest thing, the hardest thing, is communication between us. She was diagnosed with aphasia last year. Aphasia impairs one’s ability to speak. She knows what she wants to say, but when she speaks, what you hear is a jumbled-up bunch of words and mostly non-words. A year ago, we had that nice window in the mornings when we could converse for a little while. As it worsened, we could work through it. I eventually figured out what she was asking for by asking a series of yes-or-no questions.
Over the last month, it has gotten to the point that there is no starting point, because there is no stopping point. There are no windows; every waking hour of the day, she cannot speak in an understandable way. It’s something I have really been struggling with. I don’t have local family or longtime friends locally. So when I am happy or think something is funny or interesting, I quickly realize I can’t share it with her; she simply can’t process it.
We cannot eat dinner together; I am sure all caregivers can relate. Most of the time, I am not hungry anyway. I get her to sleep. I try to take some quiet time to compose myself at the end of the day. It usually ends up with me reclining my chair, eyes closed, wondering what in the hell she and I did wrong to have to go through this. Before things got this bad, I would have similar feelings, but I would justify it, thinking there must be a reason. These days, I am not so sure, but there is really nothing I can do about it.
Lastly, I know people’s instincts are to say, “You need help” or “you should check into palliative care.” Those are not things I am considering yet. Plenty of caretakers have done everything themselves up until the end. And everyone I have talked to who did that was happy after the fact and could actually assemble some fond memories to hold close.
