Showing posts with label parkinson's. Show all posts
Showing posts with label parkinson's. Show all posts

Thursday, November 10, 2011

Piecing Together the Puzzle of the Brain

Robert has had uncontrolled epilepsy his whole life.  At 46 years old now, after numerous head injuries (even with a helmet – yeah, that’s a neat trick), surgeries and medications, Robert is not quite the person he used to be. 

Robert finished high school and even took a few community college courses many, many years ago.  Now, he falls asleep reading a book after two pages (I’m trying to not take that personally since it was my book) but he can finish word search puzzles like there’s no tomorrow.  Most days he can’t remember what he had for lunch and sometimes he even forgets he ate lunch (even though he always enjoys eating it).
Robert was able to ride bikes when we were kids, figure out the bus system as he got older (he never was allowed to drive although our dad let him drive once because he was irresponsible that way) and was able to walk for miles to the mall or to the movies.  Today, he uses a walker to keep his balance, drags his right foot while walking and occasionally (okay, often) trips. 

For many years, Robert was able to manage his own medications (taking them and picking them up from the pharmacy) and all of his doctor appointments.  That would be virtually impossible today and so he has people give him his meds on time and I take him to his appointments. 
The decline in his motor function and cognitive ability has been dramatic when comparing him at age 20 to now at age 46. 

I want to know why.  Is it the uncontrolled seizures?  They can, after all, cause brain damage.  Is it all the head injuries?  Perhaps the medications are clouding his “normal” functioning?  Maybe it’s something else completely.   
Robert’s neurologist gave us a referral to a Memory Specialist and to a Neuropsychologist.  The appointment with the Memory Specialist was on Halloween; we see the Neuropsych in a couple of weeks. 

We (as in I) filled out a lengthy form before the visit and answered a gazillion (I counted) questions about family history, present behavior, past accidents and surgeries, current medications and goodness knows what else. 
The Memory Specialist arrived in the tiny exam room with another neurologist and a med student.  The three of them sat across from us and asked Robert several questions, glancing over in my direction every now and then for confirmation of his answers.  They asked him to remember 3 words but he only remembered one after being given multiple choice answers.  He couldn’t remember the city he lived in but remembered his brother lived in Danville.  He knew the date but thought it was Sunday instead of Monday.  He didn’t know the party affiliation of the president but guessed it was “the American party.”  He did some math problems (subtracting backwards, mainly) and I was a little worried about this section myself (because, of course, I was silently answering all the questions and remembering all the words just to be sure I could).

Robert was asked to write a sentence.  I had no idea what he would write or if he would be able to do so and I was fretting like he was taking the SAT and his college career depended on it, but as I glanced over at his glacially slow handwriting, I saw a sentence take shape.  “God loves you.”
Of course.  What else would he write except maybe, “God Bless You?”

The doctor then did the physical exam and it became very obvious very quickly that Robert has a huge vision gap on his right side (that explains so much – running into people, doors, anything on his right side!).   The field of vision on Robert’s right side is so compromised that he couldn’t see the doctor’s fingers when he held them up.  This was probably the most useful information I got out of the appointment because it’s information all of us can use in order to help Robert make safe decisions when walking around.   Heads up to those visiting: don’t stand to his right!

Saturday, October 1, 2011

Epilepsy: How Does it Compare

It’s difficult for me to grasp exactly what percentages and numbers mean until I compare them to something else (I didn't get the math gene in my family). I need a reference point and went searching for this so I could understand the “numbers” of epilepsy better.

More than two million Americans have epilepsy (some estimates put the number closer to three million). This seems to me to be a lot of people! Digging further, I find out 1% of the entire population has epilepsy which makes it seem rare to me. So which is it and why is it important to know?

First, it’s important to know so federal research dollars can be allocated appropriately. I’m not even sure if there is an established “appropriate” way federal research dollars are divvied up but I’m pretty sure as far as private donations are concerned, it’s a matter of the squeaky wheel getting the most money. It also helps to have a big name celebrity attached to a charity or a common condition affecting more people or a telethon or even a disease that is well known or more “relatable.”

Many people don’t even know what epilepsy is (so it’s not well known) and others are afraid of seizures and the person having them (not so relatable) so research dollars are scarce.

For me, education about epilepsy is becoming more and more important. I want to learn more about it and I want others to learn about it too. If education brings in more research money then that would be an added bonus. Since I’m not a celebrity we’ll have to go about educating and raising funds the old-fashioned way: through blogging and tweeting.

Okay, so that’s not really old-fashioned but I don’t know Morse Code and you certainly don’t want me doing a singing telegram (count yourself lucky if you’ve never heard me sing).

Let’s understand the numbers. Government resources or foundations for each of these diseases estimate the number of people in the United States living with these conditions:

HIV: 1.1 million
Parkinson’s Disease: 1.5 million
Epilepsy: 2 – 3 million
Alzheimer’s Disease: 5.4 million
Diabetes: 25.8 million

Could you have guessed that epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined? (Thanks to Cure Epilepsy for that fun fact).

The federal research dollars spent on Parkinson’s disease is five times what is spent on epilepsy. I find this astonishing but absolutely don’t want to take away research money from any other disease. What I’d like is for epilepsy to at least be as well funded and as well known as these other diseases so the stigma is removed, people understand what it is, people have it on their radar to make donations for research and we can get down to the business of curing epilepsy and fully controlling seizures.

You can help by joining the Epilepsy Foundation in their quest to get more federal research dollars. Please sign the petition here. You can also make a donation to the Epilepsy Foundation here.

National Epilepsy Awareness Month isn’t until November so I’m jumping the gun a little bit but, the way I see it, Epilepsy Awareness needs all the help it can get!

Sunday, June 26, 2011

Tools for Your Caregiving Tool Belt -- Education

As a follow up to my series about finding a care facility for your loved one (“Where to Start,” “Always with the Checklists!” and “It’s Time to Tour”), I’ve compiled a comprehensive list of resources that may be of help during all stages of caregiving. The process of learning about the condition your loved one is living with to decisions about care either in or outside the home to figuring out government and other agency resources can be daunting. Finding much needed support for the overwhelmed caregiver tends to drop to the bottom of the priority list but cannot be overlooked so I have included support resources for the caregiver as well. Taking care of yourself will ultimately help make you a better caregiver.

Today we will focus on Education.  (Before we get much further, I'd like to thank Denise Brown of caregiving.com for coming up with the awesome concept of a "caregiver's tool belt!")

Being educated about the disease your loved one is living with is a powerful tool. Knowing what to expect from the condition and how it will affect your loved one takes away a lot of the worry when confronted with a new symptom or behavior (as a precaution, anything new should be discussed with your doctor). Education will empower you when talking with medical professionals which can be intimidating for anyone!