Tuesday, May 20, 2008


One of the things that feels like a big change in my life is going to all doctors visits with John. I don't think I had ever been to a doctor's visit with him before, though he had been to some with me when I was pregnant.

In the winter, before he was diagnosed, he would come home from a visit to the urologist and not be able to answer any of my questions, so I started helping him prepare a list of questions in advance. But it isn't just that he doesn't think of or remember questions to ask, it is also that he isn't assertive with doctors. I don't know if he missed the boat when I learned to be more assertive with doctors or whether it is the passivity associated with the disease.

So I go to all his appointments and give my perspective and most of all ask questions. And it is a lot of appointments, as we learn more about this disease and put into place the set of specialists he needs.

There is the urologist--several additional tests and procedures since the surgery because the issue hasn't improved much. The urologist did do a test with a catheter with pressure sensors that showed that the problems were due to prostate issues, not due to Parkinson's (the bladder contracted well and the spincter opened well, which are the things Parkinson's can affect).

The family practioner referred John to a neurologist who then referred him to a movement disorder specialist (that story is below). The neurologist wants to see John every couple of months and the MDS wanted to see him again in three months. The neurologist put John on Sinemet and the MDS increased the dose to one half of a 25/100 four times a day (still very low). John reports that has helped him move much more freely, though I don't notice much difference.

The movement disorder specialist wanted John to have neuropsychological testing before deciding whether to prescribe medication for Alzheimers. That requires three appointments--one beforehand, the testing itself, and then one to discuss results. I have some hope from what I have read that the Alzheimer's medication will be a real help, so I pushed to get those scheduled quickly. John goes for the testing Friday and we get the results next Tuesday. But then we will be away so it will be July before John would actually start a new medication.

The movement disorder specialist also wanted John to work with a sleep specialist to find a different medication to take for sleep, as the one he takes can make REM Sleep Behavior Disorder worse. That also requires three appointments--one before and one after the sleep study itself. I'm not optimistic John will change his terrible sleep patterns, but he says he is willing to try. It probably will mean trying several different medications before finding one that works long term.

I asked the neurologist for a referral to physical therapy, as John wants to start an exercise program and I'm hoping the physical therapist can recommend a knowledgeable trainer. Everything I hear says that exercise is one of the most important things that can be done for Parkinson's. Our insurance doesn't usually pay for ongoing physical therapy, just for a physical therapist to teach the patient how to do exercises at home. I'm going to ask for some kind of written recommendations, both because John doesn't remember details well and because he can then give the recommendations to a trainer. That appointment is today--we will see what we learn there.

And that isn't counting that he is overdue to go to the ophthalmologist and should probably get his acid reflux related issues checked again. Thankfully after the prostate surgery he has met the out of pocket maximum for his health insurance so it is paying 100% and we only pay a $10 copay.


Hubbie said...

Having watched Pauline deal with similar issues I have some idea of what you are going thru. You have my deep admiration. Stay strong and know that there are people out there thinking of you. It must be nearly impossible for you without someone there to take over for you but please take a break when ever you can. I saw first hand how the day to day grind can were a person down.
Take care.

Marc said...


I had similar experiences with my Mom. I could not believe how the doctors would examine her with me sitting right there...staring at the wall mind you. Not something you are ready for.

As time goes on, you will be taking him to all of your appointments too. I took Mom to the dentist, and to my hair cuts, and doctors appointments.

Then I got to where I was asking everyone to combine our appointments so it would only be one trip.

Find someone now to sit with John. By the time you HAVE TO have someone, you will have someone broken in. People were afraid to come stay with Mom, because they did not know what to expect.

I wish you guys the best.