Wednesday, April 29, 2009

Window to the future....

I have worked for the same employer for nearly 16 years. We started with one little tire & auto service store, seriously wondering how we were going to make the first week's payroll. Today we have two companies, eleven retail stores, and a sizable wholesale division. I have been the General Manager for over seven years. It has been a helluva ride!

I informed the owner of the company of of my diagnosis shortly after entering 2009. We work together everyday and have been a successful team. the problem is.....He is in complete denial.

He asked me recently what medication I was taking. I said, "Nothing now, why?" He said he noticed I was having difficulty when we were having lunch with a couple of vendors. I explained that it is a normal symptom of CBGD and that things will get worse. He thinks I should change doctors.

I am already having difficulties in some job related areas but I have developed coping mechanisms. I'm becoming pretty good at typing left handed and I keep Word open on my desktop to jot down notes that would normally end up on a yellow post-it. During phone calls when someone gives me a quick phone number, I type it into my calculator.

My biggest concern, at the present, is stress induced tremors. When I get into a stressful situation my right leg goes berserk. I've been a public speaker for years and though speaking before big crowds made me nervous, I was an expert at masking it. Now I even feel some tremor just writing this. A nice glass of Australian red wine seems to help, but I do have to drive home from work!

Right after I was diagnosed, I joined a support group on Yahoo that automatically forwards any emails posted to the group. Ninety-five percent of these are posted by caregivers supporting CBGD patients that are in latter stages of the disease. It gives me a window to my future. It is ugly and I often delete the emails without reading them.

The real dilemma is do I live all out now while I can or do I resist the temptation and spend all my resources preparing for the future. Most people have trouble not living in the past.... I have trouble not living in the future!

Well, THAT was depressing! I promise a counterpoint soon.


  1. Well, unfortunate that your employer is in denial. The Dimwit says GO FOR IT! LIVE LIFE TO THE FULLEST! Do the things you want to do... don't wait until it's to late and say "Man, if only I could have..."

    Not depressing at all man... real, very real...

  2. My friend, I understand the struggles you are going through and I know how real they are. I appreciate the way you so openly share your story and don't mask the tough parts. I am so sorry that this is having such an immediate impact on your career. I can so relate as it was literally five months after first visiting the neurologist that I was forced to take a sabbatical for six months, leading to permanent retirement.

    Striking a balance between living for today and preparing for the worst in the future is a dilemma like no other. Just so you know, you've got friends out here. We are pulling for you. Dan

  3. Dimwit,
    My "Hotwit" would like me to tell you to not encourage me, that I am living life fuller than she approves of already! :)

    I've been lurking on your blog too. Good luck with the book and thanks.

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  5. Swarfmaker - if I could add six healthy months, I would. I would not not choose to add six months to the end however.

  6. Do everything you can now. Now. My dad has been dealing with CBD for almost 5 years now. He's late stage.

    Even if it seems inconvenient or a hassle b/c of the symptoms to travel, go to a ball game, eat out, camp. Do it now. Please.

  7. I rarely read emails about research or treatment. I don't go to support groups either. I am one of those too who struggles to stay in the present, and focusing on what I have instead of what may or may not be taken from me even in the next 20 minutes. I feel your pain on that.

    Some of the best advice I received came from my neurologist. Oddly enough it would sound like a form of denial. Hell maybe it is, but I discovered that it works. He stressed the importance of not thinking of myself as sick.

    I am going to hold out as long as I can, and do what I can for as long as I can.

    It's all about the can can!

  8. Michelle - I took you advice and went to baseball game last night. It was good therapy though I dropped a lot of peanuts. Thanks for the advice.

    Singletrack - I think I need lessons in Zen. To not just be in the moment but IN the moment.

  9. Well, I tried. What happens how is your choice.

  10. I, too, have CBGD. I get so tired I waant to stay home and in bed on my days off. I know anything that is hard to do now will be harder or impossible sooner or later. I need to work as long as I can, want to save some enrgy to enjoy time with my husband and daughter. I want to strike the balance bteween wanting to save $$ for the future when I cant work and spending on vacations etc to make memories for myself and my family. What will be more valuable to them when I'm gone? Please post any advice you have. This is my first posting. Good luck to all.

  11. Anon,
    I'm so sorry you are having to endure this torturous journey too. I too have days where I want to cash out my IRA and go live in Venice (or Salzburg or Mexico or Hong Kong depending on the day). I have been fortunate in that I lived my life seldom putting off 'til tomorrow pleasures that I could experience today. :)

    I'm not in much of a position to give qualified advice. Most importantly you should make the difficult decisions now regarding feeding tubes and the like. That will spare your loved ones a lot of grief.

    Good luck.


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