This morning upon awakening, I told my wife that last night was a night from "hell". It was probably one of the most difficult nights that I have experienced since my diagnosis of dementia with Lewy bodies (DLB) in June 2012. At the time of my diagnosis I was experiencing every diagnostic symptom listed on the LBDA website. I had experienced the cognitive issues, motor symptoms and the psychiatric symptoms that are core to Lewy body disease (LBD). LBD represents the umbrella for dementia with Lewy bodies (DLB) and Parkinson's disease dementia (PDD).
Last night was chaotic, consisting of four and one-half hours of sleep and four hours of being awake. These periods of time were broken up into four periods of sleep and three periods of being awake. Each time I would wake up, my eyes would barely open and my eyelids were swollen.
Because of osteoarthritis in my hands and the Raynaud's Disease that I have in addition to the DLB, I wear gloves on both hands while sleeping. The hands continued to be uncomfortable as well as my back due to cervical disc disease and a Pars Defect in the lower back thus making it difficult to sleep. The ever present nasal congestion was alive and kicking.
As I would get up to go the bathroom, my balance was compromised and I would veer into the left and then the right wall in the hall. My legs were weak and wobbly.
My Autonomic Dysfunction, in addition to the DLB was very active. The ones last night included, stomach growling, passing gas both ways, constipation, diarrhea, gait and balance were active most all night. The blood pressure and heart rate that can be part of autonomic dysfunction were not problematic last night as they have been in the past. I am presently waiting for my appointment at Mayo Rochester, Minnesota.
The emotional and psychiatric roller coaster ride is overwhelming for me sometimes. The emotions of pain, anxiety, frustration, concern for family and what they are going through with our journey are stressful. I rarely focus on the dementia component of my disease. The dementia component fails in comparison to the physical components which I live with. I pray for my family every day that God will sustain them through our journey. I started crying last night as I thought about my family and what they were having to endure. Our comfort comes in knowing that God will sustain us through whatever we must go through.
I am thankful that I have had total peace with my diagnoses and what I live through from the very beginning. There are several things that I stay focused on that enable me to have a positive attitude. Phillipians 4:19 says, "And my God will meet all of your needs". I have several mantras that I remind myself of daily. (1) I do not have time to die, I have too much to live for, (2) Live life to the fullest, Live life like never before", and "It is what it is and everything will be OK'.
© 2015 Robert Bowles
Robert Bowles, Jr.