Greetings,

It's been six months since I updated last so here it is:

Meds (largely unchanged):

Carbidopa/L-dopa 10/100 1 tablet every 2 hours, 6-7 tablets daily
Aspir Low 1 tablet daily
Benztropine (Cogentin) 1Mg 1 Tab 2 X daily
Omeprazole 20mg 1 Tab mornings
Metoprolol Tartrate 25mg 1/2 Tab 2 X daily
Clopidogrel(Plavix)75mg 1 Tab mornings
Atorvastatin 10mg 1 Tab 1 evenings

My symptoms remain largely the same. I know I am seeing deterioration but on a very slow level. My biggest problem is my ability to think, analyze, remember and plan. I know that others have seen this disease come quickly and destroy so much in such a short time. There is nothing consistent with this disease as it varies so much. For me I just accept it. Granted my lot has been easier than many. I wonder if my inability to accept the onset of further deficiencies lends itself to the slowness of the progression?

I have been with PKD for 25 years and still function reasonably well. For sure the hardest time has been the past 4 years (coincides with the arrival of my now 4 year old daughter). What a blessing to have had this unmerited gift! So now I have a wife who speaks little ENglish and doesn't drive, an 18 year old daughter I am teaching to drive, a 12 year old son and a 4 year old daughter. But for me lifes lessons come slowly and with great consequence. Case in point.

My 12 year old son, my 4 year old daughter were in the jacuzzi/pool yesterday. My son who is a proficient swimmer jumped in the pool on the shallow end. As I watched my 4 year old also jumped in after him. This was extraordinary as she is just learning breath control and needs a helper if she has no place to stop (step, boogie board etc.). She swims under water, stopping to tread water while taking in a breath. But she can only go maybe 6 feet to a landing target or she will begin choking. So we are working with her.

My 12 year old son goes to the other end of the pool (deep end) and dives in, swimming to the shallow end. It is a very large pool. As soon as my 4 year old saw it she immediately wanted to do it too. As she got out of the shallow end of the pool I began yelling at her to stop. She didn't. I theatend her. She ran faster. I couldn't believe it when she climbed the diving board--and jumped in!

We had maybe 10 seconds. I know I couldn't get to her and be assured that I could maintain myself and hold her above the water. I certainly was ready and in the 12 year olds absense would have jumped in after her. But I yelled at the 12 year old and he climbed out of the shallow end, ran to the deep end and dived in to pull her to the side with no time to spare.

The whole thing left me mortified. If that had of been her mother (a weak swimmer) and her (the 4 year old) there is no doubt in my mind that two people would have died. If I had been there with her alone-who knows?

And so I wonder about the oposite. For the first 15 years of PKD I had lots of help. For the last 10 I have had almost none. In fact I am the one giving the help what with education, driving, decision making, playing, disciplining, taking to the hospital with broken bones, stitches etc. But somehow there is always gas in the tank. Is it because the options are few and far between? Necesity? I don't know. But there it is.