How's Deb doing

We get asked that all the time... how's Deb doing?

And there is no easy answer, the explanation routinely changes. Today, Deb is a champion, spending her time laughing a lot and enjoying the moments along the way, besides for the usual questions she asks about the boys, or when she insists on calling Gordon for the answer. There are periods when her reasoning assures that she has forgotten something and torments her until she gets home or makes a call, only to have it return again later.

If you were to see Debbie and strike up a conversation, you too would believe she is doing exceptional, besides the weight gain from her daily medications, her sense of humor is still intact, her communication skills remain astonishing, and her ability to communicate and reminisce about everyone still exists.

When Debbie and I are together we spend a good part of our time laughing and telling stories of our childhood, belting out those 70's songs, as if we were David Cassidy, all the while joking who is the background singer this time... Even when she gets melancholy, I can usually bring her back with laughter...

But I know its not the Debbie I could once confide in about life's heartaches. Or the Debbie that made sure to embarrass me when she boasted of my latest success to random strangers. We cannot talk about my mother having dementia, or my brother that does not share his life with us, or  even the fact that I miss her. Although she would be in the moment sharing life with me, those stories would return later as a memory, add confusion to her day or she would not remember them at all.

I believe if Debbie sat in the doctors office by herself, they would be applauding one another for how well she has recovered. She will answer every question they present to her, and unless we speak up, they consider her answers to be true. When we do suggest otherwise she usually gets defensive and does not believe that is who she is. Even her brain remembers the person she was before, but many of her actions don't. 

Gordon is constantly searching for answers and striving to find a better life for Debbie. Through support groups we learn a lot from others, meeting with doctors we sift through their words to find that glimmer of hope, and do not leave without the opportunity to progress her further.

Recently we were presented with an alternative option, and a chance for some improvement. After studying Debbie's MRI scans, the doctor noticed the larger ventricle in her brain where more fluid existed. Our bodies continuously produce this fluid, and for Debbie this larger ventricle could be putting pressure on the brain? They decided to research further and with a spinal tap remove a large quantity of this fluid, relieve the pressure, and have us observe Debbie for any changes.

When they were ready to begin the procedure, Debs bravery shined again, while my nerves and stomach got the best of me, I felt my anxiety rise and I knew I would be no service to Debbie so I stepped out of the room. Gordon remained with her and they began. Since they were only able to give a limited measure to anesthetize, they needed her to be aware as they withdrew the fluid. They explained that when the spinal cord ends, it branches out into tiny nerve endings, and like the nerves they hit in the dentists chair, these too would cause a jolt if disturbed, luckily that was not an issue for Debbie.

Within a few minutes the door opened and I returned. Now we needed to talk to Debbie, listen and observe any changes in her memory, cognition and alertness. As we began, I sensed watching water boil while we closely examined Debbie for any noticeable shift. Inquiring about recent events proved positive and both Gordon and I felt encouraged with that glimmer of hope.

Slowly they raised her up, every 15 minutes returning, until she was ready to perform the walking test, measuring her speed and steps before the draw, and again after the draw where significant improvement was documented.

Since the body would remake this fluid, our observation of change would be short lived and soon (less than 24 hours) the ventricle would fill back with its fluid and the test would be over. I continue to be amazed with our bodies and their ability to rebuild and repair each day, and remain positive that these changes and Debbie's brain will continue to advance as it heals.

The confusion of her days returned and the questions continued. I often wonder what it is like for her, the constant unknown, the worry and the confusion, it never ends in her mind. She will call me in tears, disoriented and sure that she needs to be somewhere else, or certain she needs me to come get the boys. To her the fear is real, the confusion is frustrating and the doubt of what she is doing or needs to get done is ongoing.  

Repeatedly we try and help her with explanations, planners, phone calls. But like those habits we cannot break, she returns to the same pattern again and again...

The doctors were hopeful with the spinal tap, and plan to do a second round for more observation. The next step would be a permanent shunt that will constantly drain the fluid that accumulates in her brain.

So here's to a promising future, hope for better days for Debbie and another step in the right direction...