Friday, November 14, 2008

Explaining and Asking

Lately I have found myself in a bit of a quandary. It has become more difficult to explain Keith's physical limitations, in turn making it more difficult to ask those around us for help. How do you explain a person being "in between?" Keith is not physically disabled, yet he is definitely on a downhill slope. If you can't make others understand the physical limitations of one not yet disabled, how do you explain the need for help?

I have always been proud of the fact that my husband was one of those urban legends or myths you hear about. You know - the guy that doesn't mind washing dishes, changing dirty diapers or throwing a load of laundry in the washer. When my girlfriends and I get together the conversation usually rolls around to whining about husbands and why they never help out around the house. I have always been able to boast that MY husband will do anything I ask. I did not need to nag or badger him - I simply asked. But recently things have changed. I don't mind that things have changed as I understand why. The PD is progessing and Keith just can't do what he used to do. I rarely ask him to help around the house anymore because I feel so guilty asking him to do anything other than rest. So now when I get together with my friends I try to explain to them that Keith can't help out anymore. They roll their eyes and get quiet. I know what they are thinking - if he can work 50 hours a week then he should be able to take out the trash. Hell, I've had that very same thought many times. I have since come to understand that once Keith reaches his limit, he's done. He has a certain amount of time each day when he feels energetic and productive. Once that time is up, it's up. He needs to rest from that point on or he'll be in worse shape the next day. I know it. It's not so easy for others to see it.

Keith and Bryan recently attended a PD educational conference. During the Q&A a man asked how he could get his family and friends to help him. The answer - ask. Ask for help. Seems simple enough, especially for a PWP much more progessed than Keith. But this solution presents a couple problems for me. First of all, I have never been good at asking for anything, especially help. Call it being stubborn, call it having too much pride, call it what you will. I just don't like asking for help, particularly from my family. Second, a large part of me still believes that if they really cared they would see for themselves that Keith needs help, and then I wouldn't have to ask.

Speaking strictly of my family, I hear a lot of Oh he's fine! or He's still getting around okay. He'll be alright! or Don't worry. He's a tough guy! Every once in awhile when I try to tell it like it is, I get Oh man! Hmmm . . . yeah, that's too bad. What a shame! I know they mean well. I know they are trying to make me feel better, make me believe that he will in fact, be just fine. But I wish they would finally stop trying to gloss over the reality of what actually IS. What they see is a man who works 50+ hours a week and is rebuilding a 69 Camaro. They see a man doting on his children, planning to have another. They don't see the full picture and trying to explain it to them is next to impossible. Seeing is believing, so they say. And because of what they see, they simply do not believe how difficult it is for Keith to do so many different things. Maybe he will have to be in a wheelchair before anyone else gets it and offers help. Maybe I just need to suck it up and learn how to ask for help.

Monday, November 10, 2008

Consider the film SHAKEN as a holiday gift!

Deborah Fryer of Lila Films is offering a HUGE discount for all PWP and their family and friends who wish to order the film SHAKEN. If you order online the price is $150, which is the price for medical schools, PD organizations, libraries, doctors, etc. But if you are a PWP (or a family member or a friend) you can contact Deborah directly to get SHAKEN at just $29.99!! That is quite a big savings!!! Support groups can purchase SHAKEN at a discount as well, for $75.

Because every 9 minutes someone is newly diagnosed with PD, Deborah will donate 9% of proceeds back to the PD cause! How wonderful is that! (Be sure to reference "Life With Shaky" or "Mary Sullivan" when ordering).

Click on the SHAKEN link to the left of the screen for more information, or contact Deborah at -

I am putting together a list of institutions and organizations that I will soon contact to purchase SHAKEN. If you would like to add yours to my list, please contact me through the comments section of this blog, or by email -

We are looking forward to lots of sales!!!!!