My Loved One has PSP or CBD: What's That?

My mother's journey into CBD and PSP has been a long and winding one. Looking back through the years, she had shown symptoms that we really didn't know were symptoms at the time.

An occasional fall, usually backwards, and weakness in her left leg, were just chalked up to clumsiness or old age. Then her mental ability took a nosedive and she began having problems swallowing. It wasn't so easy to explain her symptoms away anymore. 

At first she would just go blank when trying to think of the right words to say. Soon, it became an all-out forgetfulness of what she had just done or said.  Finally, I knew it was time to see someone about it. Their diagnosis? My mother had dementia.

Still, there were more symptoms, My mother had complained of chronic dizziness and headaches for months. Her primary care doctor said her ears were clear, no infection, and no inner ear problems. There were times, though, she stumbled around the house like she was drunk. Also, watching her move was like watching a movie in slow motion. Everything from her body movements to her speech was slow. Sometimes she'd just look at you with a blank expression, but have a freaky look in her eyes.What was going on?

Confused, her primary physician referred her to a neurologist. After a boatload of tests, he told me she had Alzheimer's. I was relieved in a way because it was comforting to know that whatever was wrong with her had a name. However, as time passed and I researched further, it became clear to me that she didn't suffer from Alzheimer's.

I talked to her neurologist about what I thought, and he agreed that she didn't have typical Alzheimer's dementia. He decided to try and treat it as if it were Alzheimer's anyway, and prescribed different memory medications that are helpful to dementia patients. Nobody was more hopeful about their effectiveness than my mother, but, sadly, none of them worked. He finally told me that he didn't know what was wrong and there was nothing else he could do. 

And so we lived with whatever it was for months. I was convinced there was something more sinister than Alzheimer's at work here. Then in May of this year, she was hospitalized for pneumonia. It was there, watching her in the hospital bed, that I noticed still more strange symptoms. Her left hand seemed to do things on its own. Even more odd, when she was eating she would stare straight ahead and not look down at her plate.

After she was released, I noticed that she more or less would drag her left leg at times. Someone always had to be near her when she was walking down steps or an incline. She'd almost always fall because she would never look down. In fact, when I took her to appointments and they'd do the usual neuro tests, she could only follow the doctor's finger with her eyes from side to side, not up and down. She just couldn't move her eyes downward or upward.

In July of 2014, I took my mother to the Mayo Clinic to follow up on an unrelated health condition she had had the previous year. I wheeled her in for her checkup that day in her wheelchair because by this time she was so unsteady on her feet she'd fall. Her neurologist was shocked because at her appointment a year earlier she had walked in on her own without any assistance. My mother's mental state had also declined, too, and she had trouble answering simple questions.

Up to this point, I had explained to any doctor who would listen the laundry list of symptoms she had. I felt as if he might be able to help her, so I told the Mayo doctor everything that had happened in the past year. He was so concerned, he set her up for testing the very next week.

And so, at last, after all her psychological tests were performed, I was told she had not only PSP, but CBD, too. She also had a more aggressive form, because she'd gone from being independent, driving, and working out at the gym, to her present state in just a year.

The Mayo Clinic doctor also told us there was no cure, and that the diseases would ultimately kill her. 

My first question to the neurologist at the Mayo Clinic was will these diseases kill my mother? He explained to me that the diseases themselves are never what kills a patient. It's the complications that arise from them that do.

Usually, CBD and PSP patients will die of two things: pneumonia and injury.

CBD and PSP sufferers contract pneumonia because of the difficulty they have swallowing. Bits of food or liquid get aspirated into the lungs, and pneumonia can set in quickly.

My mother has already had pneumonia once. She was fine laughing and talking to guests at her birthday party one day, the next day she was falling out of her chair because she was so weak. It's important to take your loved one to the doctor or ER as soon as they start acting off. Pneumonia can kill quickly.

The other thing that most patients die from is head injuries they receive from falls. Until my mother started taking medication, she fell on a regular basis. In 2014 alone, I have taken her to the ER no less than five times. Fortunately, the worst injury she sustained was a gash to her chin that took 12 stitches to close.

I was very concerned about the possibility of either of these diseases being hereditary. The doctor assured me that while these diseases are not well understood by the medical community, one thing they are confident about is that it is not genetic.

I thought back through my mother's family history. No one I could think of had had anything like this. I asked her brothers and sisters if their grandparents or aunts and uncles had had any PSP or CBD symptoms. My grandfather had had Parkinson's, but that was the only neurological problem anyone could think of.

While I'm not too worried about PSP or CBD being in my future, I am planning ahead. Being the sole caregiver for my mother is difficult. I only have one child, and I don't want to burden him and his future family. I am making a point to have disability insurance in place that covers aides to care for me.

Up until the time I took my mother to the Mayo Clinic, we'd tried any medicine a doctor wanted to try because we were so desperate for any alleviation. None of them helped at all.

The neurologist told us there were medicines that helped a small percentage of patients with PSP, but it would only help her balance problems, not her mental abilities, and would probably only be effective temporarily. At this point, I couldn't see any harm in trying, especially if there was nothing else that could be done anyway.

The doctor prescribed Sinemet three times a day. After two weeks I was amazed. Before, I couldn't leave her alone for fear of her falling. Her balance is, I'd say, 75% better. I'm glad to report there's been no falls.

Unfortunately, I know the medicine won't work forever and her disease will begin progressing again, but until then, she'll enjoy a better quality of life.

From talking to my mother's doctor and in doing my own research, I've learned the typical life expectancy of someone with either disease is 5-10 years after onset of symptoms.

But this is confusing for me. Looking back, my mother has been showing symptoms, albeit mildly, for about seven years. Which symptoms are they talking about? There's no real hard and fast answer it seems.

I know eventually PSP and CBD sufferers become bedridden and lose their ability to speak and eat. In my view, it's probably at this point that pneumonia would be fairly easy to develop and would be what's finally fatal.

My philosophy is, you can't really put a time line on anyone's life. Things happen when things happen. A seemingly healthy person might die in an accident tomorrow, while someone with cancer might hang on for years. I think it's all about taking things one day at a time and living life.

• CBD and PSP patients benefit from physical, occupational, and speech therapy. It keeps them strong and mentally stimulated. Medicare won't pay for ongoing therapies. Talk to your doctor about it. Sometimes they can work around it.
• Because my mother can't communicate her feelings well, it's become a guessing game as to what's really going on with her from a health standpoint. I've began looking at her as I would a baby who can't tell me what they feel. I use my own judgment depending on her behavior.
• Cut food up in bite-sized pieces and use a thickening agent for liquids to cut down on choking.
• These brain diseases can cause depression. I try to get my mother out of the house at least once a week, and more if she's up to it, to give her a change of scenery. Also, I've found it's good to let her do something around the house, even if she does it wrong, to make her feel useful. So far, she's been able to avoid taking anti-depressants.
• Don't be afraid to ask for help from friends or neighbors. Sometimes, I've just got to get out and away. I have a small handful of people I can call on when I need to get out, and it's a lifesaver.

PSP and CBD awareness is growing, thanks to CurePSP.  Here I've been able to find a lot of information about these brain diseases. There's also a loving online community to provide support to caregivers and patients.

There's a listing of support groups that meet in person. Unfortunately, there are none near me. If you're a caregiver, I think this would be a great source of support.

CurePSP also sends out a monthly newsletter and resource material for caregivers. I've found these to be really informational, since there is not a whole lot of information I've been able to find online.

Also, be sure to ask your physician about any support they may offer. The Mayo Clinic where my mother was diagnosed assigned us a social worker that was very helpful in making sure we had everything we needed.