To say that the past year and a half has been tough would be an understatement. Our entire family has struggled to come to terms with what the future means with a Huntington’s Disease (HD) diagnosis. In just over a year our family of 5 has gone from a normal, happy life to one where we need to think about things people in their 30s and 40s shouldn’t have to think about…like social security, disability and long term care policies. We thought we’d watch our babies grow up together but that’s no longer a reality.
For those of you who don’t know about HD, or have never even heard about it, this disease causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities and has no cure. That’s right NO CURE! It has been described as having ALS, Alzheimer’s, and Parkinson’s Disease all at the same time. Patients struggle with personality changes, mood swings, depression, forgetfulness, and impaired judgement. As things progress they will develop an unsteady gait, involuntary movements (known as chorea), difficulty swallowing, and slurred speech. Each child of an HD positive parent has a 50/50 chance of inheriting the disease, but if that child doesn’t inherit the gene they will never develop the disease and cannot pass it on to their children. This means that each of our 3 kids have a 50% chance of the same fate.
When Mike first approached me to say he was having symptoms I was not expecting it at all. I always knew that it was a possibility and deep down I felt like it was going to happen at some point but I think you push things like that out of your mind and even though looking back there were signs, they were overlooked. I had no idea how much this disease would impact us and really had no idea what the whole disease was about. I had watched my father-in-law progress through this disease but by the time I met him he talked only a little and could still eat and walk. I never could have imagined the cognitive deterioration and psychological changes that would be encountered in the early stages of this disease. In hindsight, the symptoms started many years before his diagnosis.
In the past year I have watched my able-bodied husband go from working full-time to not being able to work or drive at all anymore. I had no idea it would progress this quickly. His cognitive skills have declined to the point that he can’t learn a new job that isn’t as taxing on his body as welding, which is what he did for the past 20+ years. His brain gets stuck on a subject to the point he can’t let it go and it becomes an obsession. There has been lying, deceit, and battles with myself and my children that never would have happened in the past. The battles with our kids are generally over trivial things and his patience level is low when dealing with them. I mean, I will be the first to admit that I don’t have the highest patience level but he used to be the patient one. It is difficult for our kids to watch the decline of their dad and to understand why he behaves the way he does at times. To the outsider he seems like the same old Mike, but living with him every day it is easy to see the changes and difficulties he encounters.
The cognitive decline has been very difficult to deal with and to watch. Mike struggles with simple instructions, asks you to repeat things frequently, and constantly forgets things. He can ask the same question 3 times at supper and have no idea that it’s already been discussed. He used to make fun of me for making so many lists and he’d tell people that I had ‘lists for my lists’ (which is quite true) but he is now realizing the benefits of those lists and makes them frequently to remind himself to do things. We saw an Occupational Therapist (OT) to help him with strategies to make things easier for him at work, etc and I felt so bad for him as the OT in training was going over all the tips and tricks he could use she came to the end and asked him which of those things he could use to help him…but she didn’t realize the irony in asking the guy with a short-term memory issue to recall what had been discussed and relay information from the discussion.
Mike’s physical decline does not seem to be progressing as quickly although he definitely struggles with the chorea because it sometimes keeps him up at night and makes it difficult to get to sleep. His struggle with sleep has affected both of us and I have chosen to move my bed to the couch because it was becoming a vicious cycle. Him waking up and struggling to get comfortable which woke me up and then he’d be afraid that he was keeping me up so he’d get up and go watch TV in a different room. This meant that neither of us were getting enough sleep so it was just the simple solution.
This post is not meant to evoke pity but rather to inform the world of this awful disease and let others know that they are not alone in this battle. It is not a journey that can be traveled alone and there are many wonderful people who have been there for us along the way already and I know many will continue to walk this path with us until the end. I hope that at least one person can read this and find comfort that it’s not just you here battling this disease and feel a little less alone because it is a lonely battle but it doesn’t have to stay that way.