Hello Elmo

December 3, 2009 at 10:51 pm

Hi Elmo:

I’m a 47 year old man, married 22 years with boys 17 and 12. Prior to CIDP I was extremely athletic – I was an expert, I mean absolute expert snow skier since I was young. Plus, I surfed, ran, weightlifted, etc.

Professionally, I was a well-paid management consultant in a large firm, then I consulted successfully as an independent for 5 years. Thankfully, I purchased and paid expensive monthly premiums on a personal disability insurance policy many years ago, upon the wise advice of a financial adviser.

Now, I am on full SSDI disability – and collect on that private disability policy as well. I definitely dealt with the shame associated with disability. It took work to get past it, although it still crops up on occasion. My wife is not as athletic as I was once was, so my situation is different from your’s in that regard.

Here are hobbies I have developed since I cannot do the things I used to:

Cooking, especially gourmet meals that dazzle my family! My wife can’t stand to see me fumble with cooking tools, I tell her “don’t watch now, just eat later and enjoy!”

Gardening – I hired a gardener who spends time each week to do manual labor, I just get to do the fun stuff.

Being the best house dad possible, making sure kid’s homework gets done, blah, blah.

Helping my wife be an absolute “star” at her job – by helping her with strategy, documents, etc. Kind of like her personal management consultant.

I did find one outdoor activity that I can do, kayaking in a quiet bay. If I get help in and out of the kayak, I have enough arm/deltoid strength to get around and really enjoy the water.

My wife understands the disease, as I am severely disabled with motor weakness, I drive with hand controls, wear prism glasses for double vision, etc. There’s nothing subtle or hidden about CIDP for us. THANKFULLY, extreme pain is not one of my issues. Fatigue is often just moderate, as well.

I think you are on the right track Elmo.

Best regards