My Everest…

Here we are the clock is ticking 24 hrs until the ride to the HD Dr. That’s 24hr’s of anxiety, and nervousness!  I mean I don’t think anything has changed.  But then again with HD, the person that has it will not even know that they are having the movements at all.  Also I was pretty darn sure that I didn’t carry the HD gene at all so I’m tossing everything out the window. So here’s where I hope that everyone around me is being upfront and honest with me regarding seeing anything that might be odd, twitching, repeating myself, involuntary movements. If they have and not been straight with me then you are all tuna casseroles! As my daughter would have politely said when she was small…without swearing at you. During the day I’m okay as I have enough to do and distract myself with….but as the evening wears on. I get antsy!  I don’t sleep and when I do I have dreams of waking up with my legs and arm shaking! Or some other ailments I don’t have any trouble waking up early as I have seen every hour or perhaps maybe I have seen even more time then I want to this night…..

On the way to my appointment we chat a bit.  As it happens when I am nervous …hubby is serenaded with the sound of my bee-u-ti-ful singing voice !!! MeeeeMEEEMeeMEE !!! It’s my distraction noodle!  As we get closer and closer to the hospital where all the answers lie, just for more fun  we need to sit in traffic., because it’s more fun this way.  I’m not stressed at all so we get there and we wait and go in together.  I fill out forms about my emotional state where I am honest about everything. Then the lady asks some of the questions out loud and some of them hubby and I agree to disagree with them, and I know he’s angry.  Later on I told him if we can be honest there… Where are we going to be? Did we come all this way to the Dr to lie to him? Absolutely not! So they ask him to leave after all these really hard questions and now the fun begins for me …I must get tortured and pelted with all the horrible cognitive tests …..read the words on this page,  read the colors in the squares, Say words with the letter S !, connect the numbers with the alphabet,now say words starting with F..,,, fart, fuck, fair….,now that your brain is completely mush,  remember these three words,  and do more tests, subtract 7 from 100….um 85? Keep going  i can’t i know it’s wrong just go from 85. Nope !  I’m stuck there!  It’s ok time’s out anyway.  Now say those 3 words I asked you to remember !  Bleahhhhhhh aCCCHHH UMMM……PIE ! I know one was PIE ! I got nothing else my dear!   Ok so we will call your husband in and take you to see the Dr.  I see him down the hall and he waves and says hello! Tells me that he has another Dr with him today and that he will come see me after this one does.  No problem.  This Dr happens to be a clinical fellow takes my file and comes in…doesn’t read it, nor does he take any time to review it with us while he’s there.  He does all the standard HD tests and then looks at my face and wonders aloud that he’s not seeing any movement or chorea.  I am just sitting there letting him do his thing.  Walks out of the room to find my Dr but he’s busy with another patient. So he comes back and tells us this and asks me to do another test and something else. Still not seeing movement. He does the same thing goes out to find the Dr and comes back in alone and is still investigating my face with wonder.   At this point my husband can’t take it anymore and blurts out she doesn’t have it! Her Dad did!  She is here to check if she does or not ! That’s when he said that makes sense!  Duh!!  Betcha he won’t make the mistake of not checking a patient file ever again! So then my Dr came in and reviewed my files.  Did a few more tests and said I was good to go for another year! WOO HOO!