Updates and Other Stuff

Working the Speed Bag

Rock Steady Boxing Update: The classes continue to go well and Jamey is getting some benefit. He can actually get out of his chair once in awhile throughout the day and that is a big deal! In addition, word is apparently getting out, because we have had a lot more visitors sitting in to see if it will be a good fit for them. I'm sure we will be adding students.

We recently learned the Rock Steady series we attend is the only certified Rock Steady program in the area. Which means that people come from below Sacramento all the way up to Nevada City to attend (that's about a 75 mile coverage). It would be great if there were another one closer to home, but this seems to be it for now. Jamey's neurologist told us that to be a certified Rock Steady Program the owner/operator must attend training back east for two weeks. Since that is a luxury not many people can afford, I understand why there are not more doing it. But, thankfully, the owner/coach of our group is passionate about it. It does take us about 45 minutes to get there but others are travelling farther than that, so I am thankful.

Claudine; our Girl Friday, and More

Caregiver Update: We now have help 3 mornings a week, Monday, Wednesday, and Friday, from 9AM to 1PM. Claudine is an awesome caregiver and makes Jamey's breakfast and lunch each of those days. She shaves, showers and dresses him as well, so it gives me a wonderful break during that time. I often go out shopping or sew, or do something else relaxing. She is a God-send. She's also strong and tall so has no problem lifting Jamey or tending to his other needs. He feels safe with her, unlike his last caregiver. Her personality is wonderful and she talks just enough for Jamey's taste (which means, not much). We hope she never leaves us (I know that's unrealistic, but I can dream, can't I?).

ASL Update: While it is a good idea, and it has helped a little, Jamey has difficulty remembering which sign is which (see last post, Concentration=Exhaustion: PD Related Problems). And, because he can't always get his body to work properly, he sometimes cannot get both of his hands to do the sign he needs, either. All in all, for him, I don't think ASL is the best way to communicate. We will have to continue verbal communication and just hope we can understand one another. The only time it is really difficult is when we are in his boxing class where music and cooling fans are loud. Usually, at home, we can muddle through!

PANC CONFERENCE: We weren't planning to attend this year's Parkinson's Association of Northern California Educational Conference, but once Dr. Khandhar asked Jamey to go personally, that took care of that! Dr. K is speaking, as are several of the Neuro PT's that Jamey and I know. The conference this year will include topics that pertain to us in particular: Early Onset (or Young Onset), Surgical Interventions, Nutrition and the Art of Movement to name a few. In addition, there is always a question and answer time (photo below is Dr. K answering a question during such). It will be held at the McClellan Conference Center (of airbase fame) in Sacramento. If you'll be anywhere close to there on September 22, go online and sign up ahead of time. You won't be disappointed!

Concentration = Exhaustion

Sometimes the simplest outing can be exhausting to someone with Parkinson's Disease. The seemingly easy act of thinking, conversing, being with others (even family) can be extremely taxing to someone with PD because they have to concentrate so hard to accomplish what we take for granted. Interaction with anyone, can wear them out. Every move, every response, everything they do, they have to think about, intently. Shallow breathing is common in PD, for if you cannot concentrate on breathing every minute of the day, your breathing is forgotten. Can you picture how arduous that would be?

Imagine you're back in school and you have to solve this word problem:
"Two planes, 2400 miles apart, fly towards each other. One is flying 200 MPH faster than the other. After 1 hour they will meet. What are the speeds of the two planes?"
Now, also imagine the planes will actually collide if you don't figure out the problem before the hour is up. And, the planes are full of people--people you know and love. No pressure now...got it? Most of us would crumble.*

That's how living with Parkinson's can feel. Trying to do more than one thing at a time; walking, talking, moving, thinking, breathing, takes that kind of concentration. And it's stressful. No wonder PD patients are tired all of the time! 

Jamey and I joined his parents and their church for a Rivercats Baseball game on Saturday night. While the trip wasn't terribly far away (I drove so he was able to relax--or maybe that was added stress 😉), and we sat by ourselves, we did interact with friends and neighbors.  We both had a great time and will probably do it again, but with one caveat. We will not plan anything for the next several days after the event. Because of the concentration the interaction with people took, Jamey was completely wiped out and slept most of the next day. It took several days for him to get back his sea legs, if you will.

Here are just a few of the things people with PD have to contend with, and concentrate on fully, to function . Please keep these things in mind when relating with PD loved ones.

• Slowness of thinking
• Struggling to find the right words in conversations
• Difficulty concentrating
• Difficulty with problem solving
• Language problems
• Memory problems
• Brain fog
• Lack of reasoning skills
• Declining general intelligence

Be patient. Wait for them to get their thoughts together. And don't overload their schedules with outings or events, because in so doing, you are also overloading their brains. Take into account the amount of concentration involved in their day-to-day living we don't have to think twice about. When you understand a little more about what your loved ones are going through, it might make it easier for you to help them along.

*No. I do not know the answer. But, thankfully, no one died while waiting for me to figure it out!

UPDATE: Just got an email from my brother Bill, a math professor at DePaul University in Chicago: "The speeds of the two aircraft are 1100 mph and 1300 mph, by the way—that’s really flying." 
Apparently, I should have made them rockets instead of airplanes!