Question about life if a cure is ever found.

[Texans 2014]

It's been a while since I have checked in. Life for my son and myself, as caregivers, is almost unbearable. My PALS is totally paralyzed from neck down. He has a feeding tube and is on a ventilator. He seems a little more depressed lately. Still doesn't sleep well at night so my son and I are constantly getting up and down during the night so we never, ever get enough sleep. We have no help. No secondary insurance, no VA, and no one wants to learn how to do breathing treatments, cough assist, etc. I get it. We can't work because he needs 24 hour care. Have run out of money and live solely off of my PALS SS disability (thank god he gets that). We do get $180 month in food stamps which has helped a lot. We don't qualify for anything more.

My sons life is passing him by. My PALS has been at this level for several years now. His friends are getting married, having kids, careers, and having fun at 28 years old. I see my son getting annoyed and feeling that he doesn't have a future. I keep telling him to go get a job, even if its PT but he says that it would be a death sentence to me by taking on 24/7 needs of my PALS.

Don't get me wrong. My son and I love our PALS but it is becoming more caregiver and less loved one. It is so difficult. We do this day in and day out and frankly I don't see much of a future for myself either. I don't see how this ends and I can't see my son and I doing this for 5, 10, 15 more years. We are exhausted!

He absolutely will not consider going to a home nor do we want him to.

He is holding out for a cure! Which leads me to my question. When they do cure ALS (and they will someday), will his body recover? Will the motor neurons repair themselves? I have tried to research this. I saw where with some other diseases, the nerve endings break where there is no chance of repairing but in ALS nothing is broken so it may be possible to regenerate muscles.

I don't want to give him false hope but I also don't want to discourage him if it is possible. Does anyone know the answer? If its not possible, I want him to know that. We are Christians and know that anything is possible but we are also realist and want to know the truth about this disease. If there was a cure tomorrow, is it too late to benefit my PALS?

I hate that I am going to post this. I don't want anyone to think that we don't love our PALS. We love him so much. This disease is H O R R I B L E ! We are high school sweethearts and have been together over 40 years but I am breaking down and don't know what to do.

I know that some have posted before that my son will be so proud of himself later and that he will get through this but I am ready for him to start living his own life. He deserves this. He is becoming bitter and so am I,


Thank you for listening...…………..

 

[affected]

I'm so sorry, for both you and your son.

I can't answer your question - I doubt there would be much true recovery after years of full paralysis, but I don't know if anyone knows the answer to this.

I would never want to see my children lose their best years full time caring. Yep great experience if they did this for a year or two. But as you say if this goes on for another 5, 10, 15 years ...

I cannot even begin to imagine your exhaustion.

 

[Nikki J]

No one can know. When asked this in more general terms Merit Cudkowicz of Mass General who is a leader in the ALS world said that there would be precedent as people with polio which is a motor neuron disease did recover oftenquite well.

She definitely did not say certainly people could recover just it was theoretically not completely impossible. I wouldn’t count on it personally

 

[KarenNWendyn]

Though nobody really knows the answer, I think we can make some assumptions.

In ALS, as motor neurons die, they are eventually replaced by scar tissue or sclerosis. Areas of the brain and spinal cord that are scarred are not viable and therefore not likely to be able to be brought back to life. If the neurons can be treated while there is some inflammation but before they have fully scarred, then there is hope they can be brought back. Current therapies. including the stem cell research with NurOwn, is aimed at protecting neurons and maybe bringing back the ones that are not too far gone.

If we look at people with traumatic spinal cord injuries, some regain some function, but it’s very uncommon for someone to recover from a complete spinal cord injury,

When a PALS is in a more advanced stage of his or her disease, it’s likely most of the motor neurons have been replaced with scar tissue.

Atrophied muscles could theoretically regrow if the nerve supply is adequate.

So I would think that if a cure were available tomorrow, the PALS who would benefit most would be those in the earlier stages of their disease.

 

[KarenNWendyn]

I also wanted to add that my heart goes out to you and your son and your PALS. I’m so sorry you find yourselves in this difficult situation.

 

[Atsugi]

If I remember correctly—somebody please correct me as needed—there IS indeed something broken in ALS. In ALS, motor neurons are destroyed in the brain, from the inside of the neuron to the outside. So by the time the myelin insulating sheath is attacked, the cell inside it has already begun to die. The cell death eventually becomes total disintegration of the inside of the neuron in the brain.
Can it be repaired? Can it be replaced? Can another neuron take over its duties? Not yet.



I am not scientist, or a doctor, and I can’t even spell the words needed to describe nerve damage. So someone else can correct or expand on what I wrote.


Will you and your son survive? Yes. And thrive! This is proven and demonstrated. I personally know CALS who recovered and went on to remarry and travel the world. I personally know teens and 20-somethings who went on to enjoy life. My boys are in college now and thriving.


Some PALS have told me that they have some quality of life even after most of the body is paralyzed. I don’t know if anyone can get an opinion, though, from a person who has lost the capability to blink or twitch an eye muscle. Do they have any quality of life? I don’t know. I regularly exchange friendly emails with quad-paralyzed PALS who say they enjoy life quite a lot. Of course, it takes a positive attitude to start with. In my experience however, I think attitudes can be chemically induced. (It works for me.)



The money situation is a tough one. You might work with GoFundMe, or reach out nationally for support. You might even persuade a Girl Scout Troop or a Soccer Team to go door-to-door. That works better than you might think. (Note to readers: fund raising is not allowed on ALSforums.)

 

[Narrowminded]

Texans - I can so totally relate. My husband has been trached and vented since 2010. He is completely paralyzed except for some eye movement and lip movement. He has been in bed 24/7 for a few years now. I take care of him mostly on my own. My DS will be 31 in a few days. He was married 4.5 years ago to a lovely gal. They have their own home.

My DD will be 24 next month. She is currently in PT school. Before she left to attend her first year of PT, she was terrified of leaving me alone with my DH. As a Christian myself, I put all my trust in the Lord to get us all through. I insisted that she go, as I have always tried to keep their lives as normal as possible. They will never truly be normal during this mess, but I do my best.

DS has Friday’s off, so he relives me that day to get my errands done. He also comes over 1-2 afternoons for a couple of hours. DD helps when she is home.

I have a huge thread “struggling” that I pour my heart out in, here. I know if you skim through it, you will totally relate.

As to them being healed if a cure came along, I’m not sure that is possible. If so, the recovery alone would be very long and arduous. I cannot even imagine what it would take to help them learn to walk again. The pain of resolving the contractures would be very difficult as well. And yes, with God all things are possible. However, maybe that healing is meant for heaven.

Hang in there, I know you are an awesome CALS, as is your son and your husband is very blessed to have you. At the same time, I often wonder as you do if there will be any life left after this is over, given the fact that with a vent, who knows how long this might go on.

Hugs

 

[lgelb]

First, as there are always newbies here, let me remind everyone that we support all spectrums of religious belief here, including having none at all.

I agree that new treatments are most likely to benefit those with early disease.

Arlington, you are in the classic Catch-22. But you are in a town with several academic programs, and I do believe you could find moonlighters (nurses, students, PTs, OTs, RTs, all of whom often work multiple gigs) for respite care, whom you could pay with income from part-time work. When my son and I took care of my husband, it was always more important for my son (who was 29 when he started his co-caregiving) to get out on occasion than for me. Then again, my husband had a genetic disorder so I was used to caregiving pre-ALS.

Anyway, if you think your son's at a breaking point, he probably is, and there's no point in comparing or second-guessing that. We all come into caregiving different people, and we all leave it differently as well. So I'd just encourage you to keep being his mom and don't let him foreclose any options out of guilt (his or yours).

Best,
Laurie

 

[Vincent]

People we love are never a burden. Having said that, I totally get where you are. I went through a really ugly time when my dad was dying of cancer. My guess talking to researchers, the whole push is to slow or, if the research fairy is smiling on us stopping progression. I don't at this point see complete reversal as being a thing. If it were possible, imagine the number of people lined up for reversal, car accidents, swimmers, people with other neurological diseases, and the organ donors who ride motorcycles. I'd be all over that. I just don't see it soon enough for me.
Vincent

 

[NinaP]

Awww i feel all Cals are at thst point at some stage. Its been 7 months now 4 of which we didnt know what mum had. She was completely functional in November, now her right hand that was left moving is slowly dying. What to say? My sister who is helping me for a week now called me hero, she is already exuasted. Mum just wont sleep. We get up every hour. I send you my support and wish u the best. As for your question about cure i pray and hope there is cure asap so those who are just getting sick to be saved. Keep strong. Like my sister said, we are in a stop now. We await mums green light in order to move ahead.