Emotional support needed, dad has DMD

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Ever since my mother and I have known my step dad, we always knew that he had Duchenne Muscular Dystrophy. We are well aware that the disease is progressive, but it hasn't been much of a worry to any of us, at least up until now. As of now, I seem to be the only one worried, but I'm being extremely silent about it, and I don't want my parents to find out that I'm worried. This is because the few times I have expressed that in the last 2 or 3 years, both mom and dad have been saying everything they could to try and convince me that dad is 'invincable' (not exactly, but he's 'perfectly healthy' in some sort of sense.) But trying to convince me like that only makes me feel worse.

What's been bothering me lately is that dad has seemed really weak this past month. He normally walks at quite a slow pace and it only takes me about 20 seconds to out-walk him, but this week it took about 10, maybe less. He also seems to be using his ventilator more often, as well as easily losing balance when walking on uneven areas.

What really struck me yesterday was when I went out with dad to buy a new printer. He normally has a little bit of trouble getting out of cars, but yesterday it took a good 5 minutes to get him out of a taxi (the driver had to help him out.) Later on, I was using his bathroom because my mom already had the other one, and I noticed an unfamiliar sense of less space in the room. As I looked over to what I thought would be plain white walls I saw a rail that was diaginally placed (probably to help a person stand up.) This rail obviously looked new, and having it there was so sudden that I just had to research dad's disability more.

So I did. After looking up DMD on a few websites and support groups, I found out that the life expectancy is 50 years at the most. People with it normally die in their 20s and 30s, and even younger if not treated properly. The sites also said that a oxygen ventilator is normally needed towards the later stages and soon a sleep ventilator as well. My dad will be 49 this June and just went on oxygen this last September. Realizing that a lot of what my dad is going through are found in later stages, I can't help but feel upset about it. Of course he's outdone a lot of people with his own disability, but that doesn't mean that I would be okay if he went any time soon or in the next few years. Dealing with my mom divorcing my biological dad when I was 2 is probably enough. It really left a huge emotional impact on me ever since, and I... Just want to keep the dad I have now. I know I REALLY shouldn't be thinking about things like this, but I just can't help it...

I'm going to do the best I can to stay focused on my academic studies though. I just hope that I can get some good advice at some point since I choose to remain silent about this. I just feel like I need as much different opinions as possible.

I am so sorry about your dad. I cannot properly express my sympathy and all of my words will be insufficient, I am sorry. All I can say is to treasure the time you have with him. I knew one person in college with DMD, she did not live to be 30.

I would talk to your mom and your dad about your fears. It may not be time to consider this yet, but eventually your mom and dad might want to consider hospice, and they can also help you and your mom prepare for what will happen.

Everyone dies, unfortunately. My parents do not have any diseases, but I almost lost my mom last year in a biking accident (she was on a bicycle and she collided with a moving car). The thought that she could be taken from me so quickly was terrifying, I rely on my mother- she is my social support.

I do not know what religion you are, but I am a Christian. Do you mind if I pray for you and your family?

edit: you might want to ask a moderator to move this to the haven forum.

Sorry, to hear that your stepfather's health is declining. Are you certain he has DMD? If so, he seems pretty unusual. Most boys with this condition need to use a wheelchair to get around, by their early teens. You say he's 49. It doesn't sound like he has a severe form of the condition or is it possible that he has another type of muscular dystrophy? He's definitely not a typical case anyway, so I wouldn't jump to conclusions about what the future lies in store for him. I understand you want to be prepared, but there may be more cause for optimism with your stepfather.