46 days

This past week I have had a string of calls from Raquel trying to set up an appointment with Dr. Nance, the Parkinson's specialist. She had been contacted about an 8 AM, a 7:30 AM and one other strange, impossible appointment time. Then she called about a 4:10 appointment last Wednesday. This seemed doable and we set it.

I assumed that Dennis had felt the need to make this appointment. Generally he sees his GP every 3 or 4 months and Nance every 6 months. But this appointment had been moved up by 6 weeks. It wasn't until after the appointment that I found out Nance had requested the earlier appointment.

As many of you know by now, Nance is far from my favorite person in Dennis' life. She has always been cold, is unable to call Dennis' disease MSA (she insists on Parkinson's) and bristles when we talk as though we have some of our own knowledge. But she was nicer, and more open this time. We spoke about hospice care, and she was helpful about the whens and the whys to move into hospice care. And, for the first time in 3 years, acknowledged my part in this horrid disease.

So now we think about what happens next. No one can put a time-frame on living with MSA. We have from one day to several million days left together. And while that could be a curse, not knowing, I want to see it as a gift given to us. Time to be together.


In 46 days, I will be with Dennis 24/7.



OMG!!! What Have I Done???????

Until later,
Ann and Dennis

Odds and Ends

Dennis finally heard from Mayo regarding his last heart test. He failed, again. Now we know for sure that he does not have Shy-Drager.

Dennis' insurance is more messed up than we thought. Nothing is being covered right now, and one customer representative told me that he only has coverage from an HMO in Wisconsin. Huh? Another mess to sort out.

Dr. Kimpinski, at the Mayo, is trying to find help for Dennis to see a movement disorder specialist in Rochester. Perhaps if this insurance issue gets straightened out, he might still get the help he deserves.

Dennis showed me why he believes he has about 2 or 3 years to live. On all of the Parkinson's scale, it appears he is moving into the final stage of any movement disorder disease. Well, I already knew that, but haven't wanted to admit it to myself.

Justina, Dennis' Thursday and Friday PCA, is working out fine. Dennis enjoys her, she works hard and is nice to Dennis. For the first time in a while, I have been feeling better about going to work daily.

We were lucky enough to receive a few inches of snow just in time for my winter carnival event at school. Whew....I was getting a bit worried.

Have a great week ahead.
Until later,
Ann and Dennis