Daily life with progressing "idiopathic dementia" is interesting in and of itself. When you throw another rare disease (Osteogenesis Imperfecta) into the mix, it guarantees that your life will never be boring.
Courtesy of the dementia, I do things such as walk into walls, lose my balance and even pass out at the drop of a hat when my blood pressure suddenly plummets (my body has problems autoregulating in several areas). Thanks to the Osteogenesis Imperfecta (OI), I was in essence born with osteoporosis which years ago progressed to severe osteoporosis. It is not uncommon for me to fracture with little stress, just normal use of a limb. The added falls from the dementia simply increase my risk of fractures and other injuries.
As part of the OI, I have had scoliosis since I was a young child. About a year ago, one of my falls from passing out when my blood pressure dropped suddenly caused me to further injure my back. I am now so crooked that my right shoulder is several inches higher than my left and in constant pain anytime I am doing anything other than sitting and resting my back against some type of support. X-rays show that the arthritis in my back is also increasing. Height measurement at the doctor's office last week shows I am down to 4' 7 1/2", which means I have lost two inches in the past year - a combination of the additional back injury and further compression of my spine.
Due to the repeated injuries from the OI throughout my life (I have had over 70 fractures), I have arthritis in a variety of places in my body and bone scans show that I have lost a lot of bone in the ball and socket joints in both hips and will need both replaced if I live long enough.
How does this impact my dementia? It reduces further my ability to be active, and remaining as active as possible for as long as possible has been shown to slow down the progression of dementias by keeping our brains stimulated and continuing to build new pathways to replace what is being lost. On days like today when my carpal tunnel* is acting up, it reduces my online time and 98% of my social life is online since I am primarily homebound and often go a month or more with no in person contact with anyone other than my roommate/caretaker.
*OI is in essence a collagen deficiency disease. It means that any system in my body that is dependent on collagen is going to be weakened thus I am much more susceptible to things like carpal tunnel also.
My comment on Twitter yesterday sums up what life with dementia and OI is like for me: "Two things get me through each day, my gratitude practice and humor - being thankful for what goes right and able to laugh at what does not."