I know many avoid talking of the word Death. I'm sorry to be so blunt but howthe heck will we know if we don't ask, right? Is it not nice ti ask has anyone lost someone with a form of Ataxia? As I said if we don't ask we won't know. I FEEL AS IF WE TIP TOE AROUND THINGS. I thought this was a place to ask what we need to know?
I don't know anyone with ataxia. from my reading I haven't seen people dying from it, but I know that with cerebellar involvement there are risks of breathing and blood pressure problems which are obviously quite serious. sorry I couldn't help more.
I truly was very pleased for your reply. I tried finding figures on death percentages. Thanks Blamketime
Appreciate you asking a classic case of I think it you say it..often wondered myself xx
cool! I felt kind of badly for not knowing more. my dad has Parkinson's and like many neurological diseases when you ask about fatality it's, "well the disease won't kill you, but complications from the disease may." which is the same as saying, yes it will, lol. but with ataxia it varies a lot and so little is known. it's frustrating.
Well, that is a good question that many people would like to not think about. The older I get, the less I want to think about it. Since I have been diagnosed with Ataxia, and Parkinson's, and have had them for a number of years, with some progression, I sometimes start to think of dying from one or the other of those ailments, and it always starts with the fact, that pronounced disability will likely be the result of advanced progression, such as swallowing, inability to walk etc., and then, I think, if it was too bad, death would be a relief, if my body broke down and couldn't function, without me suffering and being in pain. It's not pleasant to think like that, and it doesn't help, that I remember the sheer agony my Dad went through, his last year, after having a severe stroke, in a nursing home, where he had to have staff wait on him all the time, because of his mobility issues, and neurological impairment. It was a nightmare, to put it mildly. So, I am not looking forward to anything like that, and so, the few times I've thought about death, it always starts and ends with this same line of thinking, that I've just expressed. Actually, the less I think about that, the better off I am, probably. Each person is different, and everybody has had different perceptions, concerning the subject of death. Elisabeth Kubler-Ross book of Death and Dying is one I've read, on that subject. It is helpful, because we must all accept death, as part of our lives, and a better understanding of it's complexity might be useful.
My husband passed away from SCA2 this past March, he was 69. He showed symptoms of the disease when he was 32 and it progressed slowly over the years. He went from a cane to a wheelchair but maintained a positive attitude throughout. His pain from the neuropathy in his legs actually lessened in the latter years. He did have swallowing problems but not very severe. What did happen over the last year was a weakening of his body. Transfers were getting harder and harder to do. His fatigue was severe and he would take several naps a day and still go to bed very early. His doctor explained that not only was his cerebellum atrophying, but every organ in his body, making his oxygen levels low and therefore no energy. At the end he was only up and awake 4 hours a day, lost his appetite and said he was ready to let go. We called in hospice, he stopped eating and drinking and he died peacefully at home surrounded by family. Sorry if this is too much information but i thought it should be shared.
Thank you. I think our culture is so death averse we aren't prepared for something that is unavoidable. I searched for posts on this topic tonight because I just want to be as prepared as I can possibly be. I have often wondered what happened in the end, and what you have bravely shared helps me. Thank you x
MKite Thank you so much for your reply vMKite so saddened by your loss. I feel our lives come with the good and bad. We read the bad as well and I feel some need to talk of their loss to feel they can get closer to their closure in their loss.
Maybe i am still in the Denial stage, (Eliz. Kubler-Ross), but i read that by getting our body as healthy as possible, clean rt. diet, exercise, relaxation, then we hv a better chance of mitigating other residual problems that come wi chronic disease. Completely changed my diet 8 mo. ago by following Anthony William, and now my peripheral neuropathy is gone, i sleep better and hv much more energy. I thank sunvox on this blog for mentioning Niagen & Theracurmin. I too think abt dying from Ataxia, but there is still so much that can be done, & the research may be going in the right direction at NAF, thanks to sunvox again.
Different types of Ataxia lead you early deaths. You need a research this out.
I have Episodic Ataxia (EA 2), which is slow progression and typically you lead a normal life span.
Good luck.
Always,
HS
Good to hear people talk about this. It's a taboo that is not talked about and avoided particularly at the end of someone's life but it is part of everyone's life. I know you can say you don't want to be resuscitated but your wish has to be documented, I think?
I'll probably ask for this when I feel the time is right. Some people are very strong (not sure if I am) trouble is when someone is very sick and near the end its not only them, but the closest around them that suffer too. It's best to stay positive and help ourselves as best we can whilst we can. xxx
No doubt in my mind having a positive attitude Is great. But I still believe talking over death is needed. Everyone becomes curious at some point. Sure makes me feel like my life will go on for quite some time yet. It comforts me in hearing someone has had it for 30-40 years and they are still living. Thank God!!
Death is a hard one.
My Dad had SCA1 and died after a routine operation. He had weak throat muscles from his ataxia so aspirated twice in recovery room.
I annoy the hell out of my family because after going to several horrible funerals I want mine to be nice so I have a file on my desktop called ‘when I die’. I found a beautiful Seagrass coffin too xx
We all need to know and accept that we are all creatures of The Creator ( other people call it in different names), The Creator is a perfect Love and He shows The Way ( Jesus life style way of living) guided by The Holy Spirit for us to return to The Creator to be with Him to experience the perfect Love. Death is a passing stage of life and should be accepted as a way to return to The Creator. Human being is finite being with soul. The finite being ages as years pass by, and the soul continous to be restless, until it rest in Thee. Death is to be accepted as a way to meet The Creator. Since we will all be meeting The Creator, we must all accept that we are sinners, to accept and do actions that center to GOD so we can meet God with clean soul.
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