My wife has Huntington’s Disease. She inherited this condition from her mother, who suffered for years and died a few years ago due to its devastating effects. This is a genetic mutation; an autosomal dominant, non-curable, fatal disease. It exists in every cell of your body, but wreaks havoc on the most important ones…particularly the neural cells in the brain since they are the most complex. Depending upon the extent of the mutation your body can fight it for a number of years, but eventually cells begin to die and all sorts of things go wonky.
Usually it starts with cognitive issues such as mood swings, anxiety, depression, and other behavioral issues. As other areas of the brain start to struggle the person may develop issues with memory, processing, obsession, perseveration, or communication. Eventually autonomic response and motor function declines leading to things like choking, rigidity, uncontrolled movements, balance and gait issues. Your brain is dying! At the end of it all most patients are financially devastated, bed ridden, on feeding tubes, completely reliant upon others for their care, unable to communicate effectively, on multiple medications, and often in pain. At that point, other than their caregivers these wonderful people have quite often been completely abandoned by many of their friends and family. This may very well be the worst part.
I did not understand all of this when we got engaged, but have learned a lot more about it throughout our 18 years of marriage. Having watched her mom go through this I am very aware of what this does to people. It is a devastating, emotional disease that leaves a mark on everyone involved. I also have two children who are at-risk for HD; each has a 50/50 chance of developing it.
My wife is already on disability from work and dealing with cognitive issues, anxiety, depression, balance, and fatigue. She’s doing her best to stay positive through this, but many days are a complete struggle.
I am committed to seeing this through to the end for my wife, and my children if possible and necessary. However, I must admit that I am scared of what the future holds.