CBGD Awareness

I had never heard of Corticobasal Ganglionic Degeneration, but that changed in the Fall of 2013. The way I discovered the horrid of CBGD, I was diagnosed with the illness at age 44. Since then, after much exploring, investigating, searching for answers and wondering what this is all about, I have come to meet others going through the same experience of not only myself, but also what family members are having to deal with on a daily basis. I have yet to meet anyone in my daily life that has ever heard of the disease. I want that to change. So I designed this shirt, hoping people will not only order it, but wear it and spread the word. Help raise funds,increase awareness and find a cure! Order a shirt or two or three... If you are not a T-shirt fan, perhaps just make a donation or makea donation along with your T-shirt order. Even though there are notan overwhelming amount ofpatients who have to deal with this horrible illness, it does not lesson the pain and anguish that is experienced by all involved. Help support finding a cure andimprove CBGDawareness. Proceeds (after fees) will be directly donated to CurePSP.

For anyone interested in reading about what is going on with my health, here it is. I do not normally write about this part of my life and honestly, there was a good chance I would have never posted about it, but I decided to share about my CBGD journey that began within the past couple of years in order to help other people who are facing a similar situation. The below post is something I wrote for a CBGD support group.

“Congratulations! You now know your expiration date. Sorry about that!” That is pretty much how I feel.

Or, “Knock knock………..whose there…………CBGD………………Errrr CBuhhhh Whaaa…? WHO???” That works too, since I had no idea WTF CBGD was until last Fall. Never heard of it? No worries, you’re not alone. In fact, good for you not having to know all about it.

According to Wikipedia:

“CBGD- Corticobasal degeneration (CBD) or Corticobasal ganglionic degeneration (CBGD) is a rare, progressive neurodegenerative disease involving the cerebral cortex and the basal ganglia. CBD symptoms typically begin in people from 50-70 years of age, and the average disease duration in six years.” (http://en.wikipedia.org/wiki/Corticobasal_degeneration)

Or for all you medical buffs out there who like the hardcore stuff:

” Corticobasal degeneration is a progressive neurological disorder characterized by nerve cell loss and atrophy (shrinkage) of multiple areas of the brain including the cerebral cortex and the basal ganglia. Corticobasal degeneration progresses gradually. Initial symptoms, which typically begin at or around age 60, may first appear on one side of the body (unilateral), but eventually affect both sides as the disease progresses. Symptoms are similar to those found in Parkinson disease, such as poor coordination, akinesia (an absence of movements), rigidity (a resistance to imposed movement), disequilibrium (impaired balance); and limb dystonia (abnormal muscle postures). Other symptoms such as cognitive and visual-spatial impairments, apraxia (loss of the ability to make familiar, purposeful movements), hesitant and halting speech, myoclonus (muscular jerks), and dysphagia (difficulty swallowing) may also occur. An individual with corticobasal degeneration eventually becomes unable to walk.

There is no treatment available to slow the course of corticobasal degeneration, and the symptoms of the disease are generally resistant to therapy. Drugs used to treat Parkinson disease-type symptoms do not produce any significant or sustained improvement. Clonazepam may help the myoclonus. Occupational, physical, and speech therapy can help in managing disability.

Corticobasal degeneration usually progresses slowly over the course of 6 to 8 years. Death is generally caused by pneumonia or other complications of severe debility such as sepsis or pulmonary embolism.”

http://www.ninds.nih.gov/disorders/corticobasaldegeneration/corticobasaldegeneration.htm

Now, aren’t you glad you haven’t heard of CBGD before? Granted those definitions are just an extremely basic Cliffs Note peek into the full extent of this debilitating illness. Bottom line, it sucks.

In case you were wondering, yes, I am younger than the average onset age, but that has never stopped me before in life. Shingles at 16, stroke at 23, etc. What can I say? I like to live on the edge, push the boundaries and baffle doctors wherever I go. As my husband always says, I am the reason that there is the fine print on labels and consent forms that explain the one in a million chance of something happening or going wrong. There should be a disclaimer stating, “Julie, this section is for you, pay attention. Everyone else, please feel free to skip to the next page. Thank you for your time.”

It’s not all bad. I will admit, there is a silver lining for this latest predicament that I now find myself in and that is getting a rough idea of my expiration date. Not everyone gets that chance. Even though there is not an exact science to pinpoint the specific date, place and time and the average life expectancy range is 5-10 years + or – a year(s) from the onset of symptoms, there are also no guarantees a meteor will not fall on my head tomorrow, I get abducted by aliens next week or I slip in the shower this fall because a spider tried to join me (have I ever mentioned I do not like, appreciate, condone, tolerate or want to share this planet with spiders? But, I digress….). There is a rough timeframe I now own. Stamped on me like a gallon of milk. This was enough to give me a kick in the ass and have an epiphany that there are more important things in life than work, watching TV, buying stuff I do not need……etc. Spending my time wisely, not money. Buying an extra bag of groceries for the food bank, not my house. Watching my kids grow up, not TV. Those are the pieces of life’s puzzle that matter. Moments that form the corners of that one image which represents your life; accomplishments, failures and all.

Don’t get me wrong, I consider myself a good person. While on this planet, I volunteer, donate to charities, took on PTA duties when possible, save sick and dying animals, tried and still trying to raise my kids with the same type of values that make a human being a “good person.” Maybe I should have worked less hours and been home more? Probably. Could I have been a better person? Well, who couldn’t?! Regrets? Doesn’t everyone? Let’s face it, we all have that one chapter in our autobiography that will never be read out loud. Woulda, Coulda, Shoulda.

I have been given a gift. Now is my time to reflect on life. Make amends where needed, forgive what I cannot change and succumb to the inevitable (but still putting up a fight when possible). I will not just roll over and give up. I am way too stubborn for that and I also do not want my kids to learn one of the last lessons from me that if life gets difficult, just quit. I am a realist though, there are rare times you do need to just say I’m done and let go. A lesson learned while being involved in more than one bedside vigil of passing loved ones, holding their hands and telling them that it is okay to move on. My kids will each need to learn their own personal boundaries for fight vs flight, but I am hoping they will make the distance wide. I cannot do that for them. The only thing I can do is lead by example and I will do that until my last breath. Or at least hope that I will.

I come from a long line of strong people, especially women. For many generations, the women in my family have persevered, survived situations most people should not and conquered many obstacles in their lives to only emerge stronger than ever. I know I have the same genes. I had to grow up fast in my life. Be the responsible one. Be the strong one. Be the solver of situations and problems no one else wanted to deal with or tackle. Many times I have proven this to not only myself, but also to others. It is who I am. Even currently. Still now. The fixer. The motivator. The problem solver. The strong shoulder to cry on. Fingers crossed my children were and are paying attention and learning. There will not be any blame if not, that means they got to be exactly what I wanted them to be; a kid. A happy child doing happy child things. At least until now. Currently, their lives are not being just a happy child. They are happy and confused children who wonder when their mom will no longer be able to walk, will she always know who they are up to the end and finally, when will they lose their mom. I have made sure to already apologize to each of them. Even though I assume (you know what they say about that word) I will still be around and functional for at least some years longer, I just wanted to make sure I said I am sorry for turning their blissful young years into a you need to grow up quick predicament.

My daughters are only 12 and my son is 17. I would be a liar if I did not admit I run the numbers in my head. It is like a depressing algebra problem; 18-12= 6. Symptoms probably started about 3 years ago. If I want to be generous with my timeline, 10- 3= 7 more years. Maybe I will see the girls graduate High School? Perhaps I will see my son get married? If I want to be more of a pessimist, then 5-3=2 more years. Well, maybe I will see the twins get their license? I might see my son finish his first year of college? For someone who took physics in College, this is the math I now do. Other than that, I could care less about numbers. These are the only digits that matter.

Of course, there is always the chance two different neurologists are incorrect. Maybe a cure will be developed? One never knows. Anything is possible, especially in the medical field. If not, I will bravely wear my CBGD badge and march to the end. I will own it. It will just be another part of me that makes up who I am. Another piece of the puzzle, but only one piece. I refuse to let it be the entire puzzle.

Does this make me angry? Feel ripped off? Got the short end of the stick? Yes! Is there anything I can do about it? Yes! I can fight, watch my kids grow up as long as possible, buy those few extra groceries for those in need, help animals and volunteer when able. Above all, I can set an example. I can be strong. That is more meaningful than a long life of ignoring those less fortunate, not instilling values and confidence in my children, always saying I will just do it tomorrow. The battle of quality versus quantity has begun.

Most people will often wonder how long of a life they will have and what they will miss. I know I would occasionally think about it out of sheer curiosity, do general math in my head; Age – Future Year = Possible Existence. Now that I have a possible peek into the crystal ball, the vision has ignited a passion in my heart and soul to make the most of it, conquer a Bucket List (I guess I should write one first) and force CBGD to catch me, not sit on the bench waiting for it. Is this premonition worth the battle of CBGD? Obviously not. But I am a person who tries to find silver linings hiding in the impossible, even if it’s just one tiny little shredded sliver. I still have time. This is the silver lining I will grasp, wrap around my stiff fingers and hold onto until my hands can no longer close.

I will answer the door. “CBGD, I can see you are not going to leave so you might as well come on in and have a seat. Even though you showed up on my doorstep unannounced and uninvited, I will put some tea on cause you are in for a long wait.”