Tonight's picture was taken in July of 2009. That day, Brandon (Mattie's best cancer buddy) was celebrating his birthday in the clinic. His mom planned an ice cream party! Next to Mattie and Brandon was Jocelyn. Jocelyn also had osteosarcoma like Mattie and she was a great mentor to Mattie. Ironically both Jocelyn and Brandon were older than Mattie, yet all three of them got along so well together. It is hard to believe that both Mattie and Jocelyn are no longer with us.
Quote of the day: You can't converse with Alzheimer's sufferers in the way you do with others; the dialogue tends to go round in circles. ~ Kevin Whately
It was another day of driving and MORE driving for me. I got my mom out of the house by 10:15am this morning in order to drive to Rockville, MD for a neurology appointment. I was stressed out as I did not know if we would make the appointment in time. Getting my mom together and out the door is challenging. Literally she gets up at 5:30/6am and doesn't get herself downstairs for breakfast until 9:30am. She is scattered and not at all like the mom I used to know. Somehow I pushed her along and we got to the appointment.
She was very hesitant to go because she has no insight into all the symptoms I am seeing and experiencing in her. For the past three years I have been saying to Peter that I suspected my mom has a form of dementia. However, my mom did not want to hear it. Not unlike the fight I had with them to get a diagnosis for my dad. Mind you I noticed signs in my dad starting in 2014/2015. But my parents did not want to listen to me. Given that I had a country between us, it was very hard for my to be proactive. But now that both of them are under my roof, I am confronting the reality and I am BIG on being proactive about signs and symptoms.
Given my extensive experience with neurologists, I wasn't expecting a touchy feely person today! In fact I call my own neurologist, "Mr. Personality." NOT because he has one, on the contrary, he absolutely lacks any sort of personality. He makes dry white toast look fascinating. However, he is very competent and an excellent diagnostician. I took my mom to this same practice and saw my doctor's colleague who specializes in movement disorders and dementia.
After being in the office for an hour, the doctor suggested that my mom has either Parkinson's or Lewy Body Dementia. I mentioned Lewy Body Dementia symptoms to the primary care doctor (Yes DOPEY for those of you following along), and he thought I was crazy two weeks ago. Apparently Vicki isn't so crazy after all.
The doctor wants my mom to undergo a transcranial sonography, which is a useful tool in the differential diagnosis of parkinsonian syndromes. In addition, she will also have a two hour or longer neuropsychological test in September to assess for dementia.
The more I am reading the more confusing it seems to be to differentiate between Parkinson's (PD) and Lewy Body Dementia (LBD). One of the biggest similarities between PD and LBD is dementia. Some studies have found that approximately 78 percent of PD patients will eventually develop dementia. More specifically, almost half of Parkinson’s patients will develop a certain type of dementia called Parkinson’s Dementia, usually 10-15 years after their initial PD diagnosis.
Parkinson’s dementia is different than LBD, mainly in which symptoms occur first (dementia symptoms or motor symptoms). Patients with Parkinson’s Dementia will first show Parkinson’s motor symptoms, followed by dementia many years after diagnosis. Conversely, LBD patients will first show dementia symptoms and may show motor symptoms later. This is exactly the pattern I have observed in my mom over the past several years.
Lewy Body Dementia (LBD) is a chronic, neurodegenerative cognitive disorder, and is the third most common form of dementia. Unlike most other forms of dementia, people with LBD have Lewy bodies in the brain. Lewy bodies are abnormally-folded proteins found in the nerve cells of the brain. Patients with LBD may experience memory/cognitive problems, visual hallucinations, and Parkinsonism symptoms.
After this appointment, I drove back home (each way was a 40 minute drive) to pick up my dad and take him to his speech therapy appointment in Arlington, VA (which is another 30 minute drive each way). I attended my dad's session and we are working on ways to get him to use a daily memory notebook. The therapist is encouraging him to take some responsibility and to turn to his notebook as reminders about his day. She told him that the notebook.... is the written form of Vicki!
However, all of this, I took my parents out to eat and finally I am home and digging through emails and catching up on my own work at 9pm!
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