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AndyW

When do you tell your customers you have PD?

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I am 56 and was diagnosed in 2014 but in retrospect was probably showing symptoms for several years before that. I'm a self employed software engineer working out of my home in Seattle and do all my work over the internet. I have no face to face interaction with any of my customers. I have one large customer on the east coast that is responsible for 80-90% of all my income and several smaller one that I do small projects for now and then. Like many people I live paycheck to paycheck. I had worked for the same company for 20+ years but lost my job when the economy crapped out in 2008. Unable to find a new job I started my own business but between being unemployed and getting the business off the ground I've burned through all my savings and home equity. In other words if I lose my main customer things get really bad really fast. I will lose my house, my medical insurance, etc. I know I can apply for disability and medicaid etc. but how long does that take, a year? Two?

The problem is not the physical issues with PD but the mental ones. Lack of concentration, apathy, depression, and general cognitive decline. My work is noticeably suffering. I constantly missing deadlines and what I'm delivering is not up to my usual standards.  I' working at probably 50% of usual capacity. Either my main customer hasn't noticed or isn't saying anything. I'm not sure which is worse.  We haven't finished big multi-year project A yet and he is looking forward to working with me on giant projects B and C in the future. 

How do I tell him my productivity is substandard and only going to get worse. Morally and ethically how long can I continue to accept the same money for doing less and less work? I know I should be proactive and bring it up before he does but I am deathly afraid if I lose his business I will literally  end up homeless. The most insidious thing about PD for me is that mentally I've always been a great problem solver but that capability is what PD is taking from me. As dealing with PD places ever more complex problems in my path my ability to deal with them will be ever decreasing. 

Thanks for letting me share. I'd be curious to know how others in a similar situation have dealt with the working issue.

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Welcome, Andy from a fellow Seattleite. That's a tough situation to be in. I don't have any immediate answers, rather I have a question. Have you connected with any Seattle PD  support groups? There are several available. Many are facilitated by a woman from the NW APDA named Suzanna Eller. She is a great resource.        

If you would like to get more information please send me a PM (private message) through this Forum. I'd be happy to share local information with you and share my own experience with you. 

I hope someone who is in the same position as you being self-employed will have suggestions for what to tell your largest customer. 

Owning a home in Seattle is a huge plus for you right now. Don't panic while you wait for more responses.

Beau's Mom (Dianne)   

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Andy, I’m a couple years older than you but was dealing with the same issues. I participated in a study a couple of years ago to determine if Azilect could aid in cognitive decline. I’ve been on it a couple of years now and it does help. I’ve also found that the more physically active I  am, the more mentally sharp I am. I thought I was in the twighlight of my career only to find that I have more to give. I’ve written some of the most complex systems in my career over the last couple of years. My employer does not know I have PD.

Dave

 

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Andy,

sorry to hear about your troubles. I get the feeling you were (are) a Type-A person who made decisions quickly and easily and problem solved around what others would see as catastrophic. Now with PD, that essential part of your personality seems to be under attack and fading.

heres a couple of suggestions:

can you afford to bring on a college intern who could do some of the work for credit and a small stipend.

Can you renegotiate your contract with your major customer - it doesn't sound like stress is going to be as much a motivator for you as it has been in the past.

i encourage you to make the best of your future and not dwell on the level of perfection you have achieved in the past. Focus on excellence where you are with your current abilities. 

We all face the prospect of getting older - not many have to do that while dealing with PD - but hopefully we can find a way to get better. 

You sound like a survivor to me. And I'm sure you find the right resources to help you stay productive.

-S

 

 

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Andy, Superdecooper's advice is excellent. I have a Type-A personality and it took quite awhile for me to realize that perfection is not a choice when we have PD. I stressed myself into more severe symptoms for several years before I recognized that fear of a disastrous ending kept me from having any joy at all.

Pat yourself on the back for having hung on for this long, and for asking for help. We are happy to share our experience, strength, and hope.

Dianne    

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Thanks everyone for the positive words of encouragement and advice from outside "the bubble". Sometimes it seems the bubble I find myself living under is semi-permeable. The positive thoughts seem to just float away while the negative ones seem to be trapped inside and constantly bouncing around. 

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