Post by roosterillusion on Dec 3, 2019 7:20:22 GMT -8
Hi All,
Dad had more tests done, and multiple neurosurgeons confirmed that he has Myelomalacia, which is a softening of the spinal cord. From what I understand it is degenerative and can lead to death due to respiratory paralysis. If you catch it early enough it can be treated, but apparently we're too far past that at this point and it is a result of either his initial injury or one of the surgeries. My guess is the initial injury.
Dad no longer leaves the house. No more physical therapy. No more massage. Refuses professional mental health help. He feels abandoned by all of the doctors and surgeons, which I understand. I'm still trying to wrap my head around this. No one has explained this to me and I don't know what the timeline is like for this new development. I've just been reading stuff online, which is pretty terrifying. If he wasn't leaving the house before, I doubt he will now. I feel so freaking defeated.
Anyway, just wanted to give an update since you all have been there from the beginning. Thanks for reading.
Dad had more tests done, and multiple neurosurgeons confirmed that he has Myelomalacia, which is a softening of the spinal cord. From what I understand it is degenerative and can lead to death due to respiratory paralysis. If you catch it early enough it can be treated, but apparently we're too far past that at this point and it is a result of either his initial injury or one of the surgeries. My guess is the initial injury.
Dad no longer leaves the house. No more physical therapy. No more massage. Refuses professional mental health help. He feels abandoned by all of the doctors and surgeons, which I understand. I'm still trying to wrap my head around this. No one has explained this to me and I don't know what the timeline is like for this new development. I've just been reading stuff online, which is pretty terrifying. If he wasn't leaving the house before, I doubt he will now. I feel so freaking defeated.
Anyway, just wanted to give an update since you all have been there from the beginning. Thanks for reading.
Roosterillusion- My heart goes out to you. After all your struggles to help your dad this has terrifying finality to it. It certainly sounds like the doctors are not interested in helping people with meet the effects of such a diagnosis.
Setting one's mind and motions to help person with end-of-life care and "issues" is a painful challenge that will force you further down this path of how you react to someone else's hopelessness and depression. I suppose it is a negative lesson, except when it is your own dad... I just have no idea how one handles it nor any advice to offer, except to remind yourself that it is ok for YOU to be different from your dad. Perhaps through meditation you will find compassion for people who are overwhelmed by 'the dark side'. Such moments will come and go no matter what you do, but I know you will cling to your own friends and sanity.
I hope you will continue to post. SCI can be so devastating for families and it has hit your own particularly hard. We care.
roosterillusion , I'm so sorry that the news your family gets keeps going from bad to worse. From the little I have read about Myelomalacia, it makes common sense that if they did surgery and stopped further compression then surely the softening would decrease or halt the progression? What do the 'experts' actually say about it, why can't they help? Have you contacted other experts for their opinion?
As for your Dad.....is he still using the computer? Because using the computer is another way of being able to keep socialising....since he doesn't want to leave the house at all, at least using the computer is giving him access to the outside world and conversations with others.
My Mum who doesn't have a SCI but has many health issues, barely even moves in the house, the only time she leaves is when she has to go to the doctor for a prescription. All she does is sit on the couch watching TV...her partner does all the housework. So I understand (in a small way), the frustration you feel about your Dad giving up.
Thank you so much for your thoughtful replies. Dad has told us that he is dying, but he hasn't actually heard that from a physician. I asked him to please meet with the neurosurgeon that diagnosed him (another neurosurgeon looked at the tests and agreed with the diagnosis and that no surgery was possible). At the very least the doctor should let us know what we are facing and generally what to expect and what our options are, if any. He seemed receptive to that.
Dad has had three back surgeries in an effort to create more room for the spinal cord and has hardware in his back since his spine was destroyed from the initial infection. Some of that bone has grown back. My Dad says he feels worse and worse every day, and he is extremely scared. I asked him to see a mental health professional and he didn't seem sold on that idea. I'll keep bringing it up as I feel like that's literally all I can do for him right now.
Dad does spend a lot of time on the computer, but he doesn't interact with people online. I've tried to get him to join groups and chat, but he doesn't seem interested or feel like other people know what he's going through. We've also tried to connect him with SCI mentors numerous times to no avail. His life is checking email, ordering things on amazon, and watching TV.
I'm just babbling at this point. Thanks again for being there for me through the past five years. What a struggle, I had no idea what we were in for. I feel like my parents are my children and they're unable to do things for themselves but I'm unable to help them, too.
roosterillusion, Gosh, RI, few things are worse than ill-behaved children who never grow up. The most important thing for decreasing pain is moving around as much as possible. Since your dad does not it is inevitable that his pain level increases.
My two cents for whatever its worth. Many years ago I was a psychologist for a hospice. People who have not been exposed to therapy in some way are often intimidated, scared by the idea of talking with someone. I have found it helpful to find something meaningful to the patient to help engage them. eg. do you want to talk with someone about what you want for the time you have left or do you want to talk about how I can help your family after you're gone. It is not unusual for someone to not want to know what the guess is on time left. It is always just a guess. You didn't say whether you are seeing a therapist.I hope you will. its such a difficult time .
Post by roosterillusion on Dec 12, 2019 9:14:44 GMT -8
kate, What a thoughtful reply, thank you. My family has always been very anti-therapy, and I think you are spot on that he may be intimidated or even confused as to what he would talk about with a therapist. I'll try to ask him those more pointed questions to help him start thinking about what that conversation might look like.
Gratefully I am seeing a mental health professional regularly and don't know what I would do without her! Biggest gift I ever gave myself. Also one of the hardest things I've ever done.
Hi roosterillusion, thank you for keeping us up to date on the progression of your dad over the years. I'm so sorry to hear that this is what it comes down to. I've never heard of Myelomalacia until now however if there's nothing else that can be done to improve the situation, I think it's best that you all stay strong for him. He needs to see that you guys are doing ok and will continue to do ok and that should take a little bit of stress off him. It's crucial that all of your stress levels stay low as it can be dangerous to all of you if not. I know it's much easier said than done but you're a strong person and you need to continue to keep your head up. It's in your and your family's best interest!