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Tonight's picture was taken in November of 2005. That day we took Mattie to The National Geographic museum. A museum we never went to before and haven't visited since. I will never forget the visit, the fun Mattie had and upon exiting the Museum, I snapped these photos!
Quote of the day: In the garden of memory, in the palace of dreams ... that is where you and I shall meet. ~ Lewis Carroll
This afternoon, I took my mom to meet a new neurologist. She did not like the first neurologist I took her to, so I worked hard to find a second opinion. When I tell you it took over three months to get today's appointment, I am not kidding. Mind you my mom completed a battery of testing with the first neurologist, so I really thought today he would look at this testing and help us along with a plan of care. No such luck. Naturally he wants to do his own testing. Different tests altogether, and this doctor is far more evidence based. This doesn't surprise me, as he is the director of a parkinsonism clinic at a major hospital in our area.
However, despite this doctor being competent, that is not the first thing you notice about him. What you immediately notice is he is conversational. He talked with us, is very humorous, positive, and has a good spirit of hope about him. I told him he reminded me of the famous doctor the movie Patch Adams was based on. Typically I have to admit, I find most neurologists, odd. They have trouble connecting and relating to human beings. He is the exact opposite. I have a long history with neurologists, so this isn't my first rodeo.
He spent an hour talking with us. Correct, you read this right..... 60 minutes. How many doctors spend this time with you? I am sure there is a clinical purpose for this, but this fellow caught my attention today. He is collaborative and wants to respect our wishes regarding care and treatment. It turns out his whole office staff is lovely and they told me today that the doctor is an amazing person and boss. He always wants to help, has a great deal of positivity, and his personality is contagious.
Any case, my mom's situation isn't clear cut. So we agreed to more testing: 1) a DaTScan, 2) a blood test, and 3) a cognitive test to focus on memory loss.
Some elements of the standard in-office neurologic exam for Parkinson's Disease (PD) are very characteristic, such as:
- decreased blink rate
- small handwriting, that decreases in size as the writing continues
- small, movements of the hands and the feet, worse on one side,
- characteristic stiffness of the arms and the legs, worse on one side,
- stooped posture
- decreased arm swing on one side while walking
- the characteristic walk in which the whole foot is planted flat at one time – instead of the heel being planted on the ground first
- the characteristic way of turning by taking multiple steps and not pivoting
If there are enough of these features present during an exam, with or without a rest tremor, especially if coupled with a history of certain non-motor symptoms that typically appear before the movement symptoms of PD, such as constipation, loss of smell and REM behavior sleep disorder, the doctor will feel sure of the diagnosis. We had lots of questions today about smell and sense of smell.
In 2011, the Food and Drug Administration (FDA) approved an imaging test to help diagnose PD. In this test, a radioactive tracer, also known as DaTscan, is injected into the blood, where it circulates around the body and makes its way into the brain. It attaches itself to the dopamine transporter, a molecule found on dopamine neurons. Several hours after the tracer has been injected, special imaging equipment scans the head to detect the presence of DaTscan. This is a three hour long test, that I need to schedule for my mom on Monday.
PET scans and DaT/SPECT scans examine the “function” of the brain rather than its anatomy. This is an important point because unlike in strokes and tumors, the brain anatomy of a Parkinson’s disease patient is largely normal. These scans can show changes in brain chemistry, such as a decrease in dopamine, which identify Parkinson’s disease and other kinds of parkinsonism.
In addition, we discussed memory loss. My mom really has no insight on her memory. However, today, she listened to my concerns and agreed to further testing. The doctor is encouraging her to go on a memory loss medication (based on testing from first neurologist), similar to the drug my dad takes. However, the doctor explained that this drug tends to have a better response in Parkinson's patients than Alzheimer's patients. Nonetheless, we decided to hold off on taking this until we get further data.
Specifically the doctor discussed the Rivastigmine patch. So the drug he is proposing she take isn't an oral med, like my dad's. Rivastigmine will not cure these diseases (Parkinson's and Alzheimer's) and it will not stop these diseases from getting worse. However, rivastigmine can improve thinking ability in some patients with these diseases.
In Alzheimer's disease, many chemical changes take place in the brain. One of the earliest and biggest changes is that there is a decrease in a chemical called acetylcholine (ACh). ACh helps the brain to work properly. Rivastigmine is an acetylcholinesterase inhibitor. It slows the breakdown of ACh, so it can build up and have a greater effect. However, as Alzheimer's disease gets worse, there will be less and less ACh, so rivastigmine may not work as well.
After this long doctor's appointment, I drove back home to pick up my dad. I then drove them to Alexandria, VA to pick up our Foundation's holiday letter at the printing company. I think I almost have all the necessary parts put together to start this mass mailing. If I only had a workable database right now to print mailing labels. I am working on that, and given my current state of affairs, everything takes me longer. Once chores were done, I took my parent's out to dinner. My dad really prefers eating out than at home. I have no idea why, but it is definitely part of his pathology. I have to admit, today I was exhausted. But eating with him a show. There is no rest for me. I jumped up to the bathroom with him twice while at the restaurant, and I promise to spare you that details. In between bathroom runs, I manage his eating pace (so he doesn't choke) and his need for tissues. Somehow food and chewing triggers his nose to drip. It drips year round and he doesn't have a cold. Given his nose is like a hose, I carry small garbage bags with me, to capture his tissues. As I don't feel it is anyone else's responsibility to handle his dirty tissues. All I know is I deserve a break, but won't be getting one anytime soon.
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