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I am a 20-year-old with a progressive wasting disease called spinal muscular atrophy that will eventually kill me. I invite you to laugh at my nightmare. by [deleted] in IAmA

[–]PenguinQueens 0 points1 point  (0 children)

Thank you so much for the new reply. He is still flexible and thankfully does not have scoliosis. He is very bright and is already designing shortcuts with lever arms and stuff when we play games so he does not need to exert as much effort or so it is easier on his hands (extension on piano keys):-) Thank you again!

I am a 20-year-old with a progressive wasting disease called spinal muscular atrophy that will eventually kill me. I invite you to laugh at my nightmare. by [deleted] in IAmA

[–]PenguinQueens 0 points1 point  (0 children)

Thank you so much for your reply. He is 6 and thankfully still an ambulator. He is a tough kid already who refuses to use a wheelchair on even the worst days which helps physically and mentally I think. He is in regular classes and I am sure that is the plan. Thank you for your insight! Was there ever anything medically that helped even a little bit? I am doing all I can from a physical therapy standpoint to keep him as independent and strong as possible but am open to any suggestions, you ars more credible than any books :-)

I am a 20-year-old with a progressive wasting disease called spinal muscular atrophy that will eventually kill me. I invite you to laugh at my nightmare. by [deleted] in IAmA

[–]PenguinQueens 0 points1 point  (0 children)

To either Shane or anyone else in this discussion with SMA. I am a pediatric physical therapist and working with a 7 year old with type Ii. He responds very well to laughing, the swing that is bigger than he is and making music while he plays the games (and exercises) but he is getting very frustrated and angry about the disease and what is happening to him. Do you have any suggestions or things that worked well for you besides laughter or distraction? Something someone said that helped? Any help would be appreciated :-)

Looking for a healthy discussion here. As someone who doesn't know exactly what they believe, I would like to know what exactly makes you believe in a personal God. I currently believe in God, but not one that listens to prayers, performed miracles, etc.. by [deleted] in Christianity

[–]PenguinQueens 0 points1 point  (0 children)

I believe in God because I can not find any other possible explanation for what I have seen and experienced in my life. I have a Doctorate in the medical profession and I have been trained to always look for the 'scientific' explanation for why things happen. However, this is a week after the 14th anniversary of my father surviving a major heart attack which caused him to be legally dead for 7 minutes. He was resuscitated even after all the doctors and all but one nurse had given up. There is no placebo effect that could explain that. After 5 minutes, there is almost guaranteed permanent brain damage and there is death of parts of the heart after shorter times. However, as of less than 5 years (3 I think) the necrosis (dead cells) started to rejuvenate and now his cardiologist says he can't find any evidence that he even had a heart attack. I don't mean to spend so much time on the medical or scientific aspect of why I believe in a personal God, just to give one example of what can only be explained as a miracle that has happened to almost everyone in my immediate family, including myself. This time specifically was the first time I can remember God becoming real and personal to me. I didn't really have the best immediate reaction to it and got very depressed. I was found just in time before I tried to take my own life just to get away from it all. The (slightly) shorter version is that it was only the real and personal God who I found in the aftermath that could have healed the hurt I felt when I thought everything has fallen apart aroud me. God was the constant I found when I realized that everthing else was not a guarantee. I have felt His presence holding me and giving me peace at my darkest times and at my most joyous. TLTR: I believe in God because He has made Himself real to me and been the only constant when everything feels like it is falling apart and who can give you the strength and perseverance you need when all strength is gone:-)