I'm back - About My Son Johnny

[Valya]

Those of you who've been on this forum for a few years, will (I hope) remember me and my son, Johnny. He was diagnosed at age 18 with ALS, in mid-2008. He's now 22. I posted here at that time.

I haven't been regular here because I was uncomfortable posting someone else's medical information and honestly, I still feel that way but I'm at a loss and hoping someone will have some advice or tell me if I'm on the right track.

My son's progression has been steady. He should be using a walker but refuses. His walk is very 'wavery', like his feet go where they want to, not where he choses but he does arrive at his destination. He's lost most of the strength/coordination in his hands, can't raise his arms. He accomplishes his daily needs labouriously. His speech is hard to understand. I'm very careful with his food, to avoid choking.

He fell last week, was unable to get up for about 2 hours until his cousin arrived for a prearranged visit. He was unhurt.

He refuses to talk about ALS. He refuses A N Y help of A N Y kind-he makes NO concession due to ALS. He didn't speak to us for 2 days, when we replaced door knobs with levers. The last couple months, he refuses to go out of the house (except with his cousin), not even for a drive thru McFlurry then home, although part of that is he's very shy and doesn't like appearing different from other people. Also, he refuses to ask / accept help with a seat belt. His appetite is good, but he's lost interest in food, no longer cares what he eats. His weight has dropped to 135 pounds-I get as much hi calorie food down him as possible.

I got him to agree to physical therapy last year, he refuses to go back. He was a patient at Forbes Norris for a clinical trial but that ended and he refuses to go back. We have a neuro in town, but there's not much he can do when Johnny' isn't open to any assistive aides or occu therapy.

After a convo with his cousin today, I find out he's given up, sees his condition detoriating and has no hope. My younger son says leave him alone, he needs to deal with this his own way but I can't accept that, not yet. If it was last stage, refusing equipment, I get that but not now, he still has living to do.

We haven't pressured him to talk about the ALS because he would shut us out and we didn't want to upset him. But it's time, he needs to talk. My thoughts are try to get him to talk with me, give him a loving, kind 'tough love' talk (essentially- oh soooo hard :-() 'ya ALS sucks and you got a bad card, but there's more living for you, more areas where you can be part of life and you can't give up.'

I just can't let him sit in that chair with out trying to get him to see he still has life to live.. or am I wrong? I don't know what to do and am crying as I type. This h orrible disease is taking him one piece at a time but I'm losing him before he's even gone.

He's never complained about ALS or any aspect of the disease, not ONCE. He is silent about it, just turns away. He's such a dear, so funny, smart, kind. He is my hero. How can a 22 year old deal with such an huge burden, and how can I help him see he can't give up?

Any help is appreciated. Thank you so much.

Valya

 

[brooksea]

Yes, Valya, I remember you. I'm so very sorry it has come to this with your son. So not fair!

Do you think if your son were able to be around others that had the same d x that he would have a different attitude? I don't know if this is a viable solution, as it is on the east coast and I don't know what is available, but check this out:

http://www.leonardflorencecenter.org/Our Communities/lfclsite/alsmshouses.html

He is very young and his ideas about life are not yet fully formed, but he is an adult and can make his own decisions. I know that makes it very hard for your family.

 

[vzandt]

I wish I could help. Would he consider meds for his depression. I don't know how my 55yr old husband deals with it. I cant imagine a 22year old. Sometimes tough love works and using equitment would keep him safer. I pretty much forced my husband to use the cane..then the walker. Now I'm working on the wheelchair. Told him I cant bear it when he falls. But with a kid..when they cant bear being different. My heart goes out to you. I hope someone here can help you.

 

[Valya]

@ brooksea
Thanks for the response, I remember you also. So sorry to see your husband passed in January. I’m glad he’s free from this horrible disease. I hope you’re doing ok.

As far as Johnny being with other ALS patients, there are a few in town, not many as it's a small town. They are all in their 50's and he wants nothing to do with them. And now that his speech is worsening, he rarely speaks in full sentences and he’s very self-conscience about it, so he’s very uncomfortable in gatherings that aren’t family.

We are on the west coast and if he won’t go to mcds, he won’t go there, but I will check out the link and thanks.

@ vzandt

Thanks for your response. His local neuro suggested meds for depression and he looked him in the eye and said ‘No, I don’t need them.’ Anything that will help him, he won’t use. He also told his cousin that he won’t use a wheel chair. She’s awesome, so honest with him and she asked him ‘what will you do? Lay in bed all day?’ He didn’t answer.

When he fell last week, I got out the walker, told him I wasn’t ‘telling him’ to use it but it was just ‘there’, hoping he wouldn’t feel pressured to use it. He put it in my bedroom, out of sight.

That’s my fear, I’ll come home and he’ll be on the floor with his head cracked open on the tiles. If he keeps his cell with him, he can call but when he fell last time, he couldn’t reach his cell. He almost can’t use his cell, due to loss of hand/finger coordination, but he refuses to get one that would be easier. He wont’ use a call button, I tried that too.

It’s so frustrating, wanting to keep him safe and respect his dignity and his wishes to handle the disease his way, while watching him slip further in depression. I can’t let that happen with out trying to pull him out, even if he gets mad.

Valya

 

[brooksea]

Valya, I should have mentioned that there are younger people at the Florence Center. Please check it out. Everything is automated! The pALS control their own environments.

We met the guy that initiated this and he was 36 or 38 at the time. A very cool dude.

Ultimately, it is his decision to do what he wishes with his body. I know this must be heartbreaking for you and your family.

thinking of you.

 

[Danijela]

Hi Valya,

I too remember your posts, and certainly remember Johnny. He used to have a profile on PLM, which I have not seen for a while, I guess he deleted it. I also recall him playing an instrument, something I assume he had to give up.

What can I add to the above? Ultimately, I am glad he is still around : ). As CJ points out there are some younger people dealing with ALS, and gently guiding him in the direction of perhaps learning about their experiences may be a start. I know of a UK based young woman who was diagnosed at 21. She is in her late 30s now, very feisty, and living her life to the full.

On the other hand I recall Johnny having the kind of attitude you describe from the start (ignoring ALS, not speaking about it or engaging with it). He is young, and this may not be the best and the most helpful way to 'do' ALS, but it is his way. I guess choosing how to deal with it is one final thing he has a complete control over (considering how dis-empowered people feel with the illness).

Wishing you strength. Dani

 

[johnnyliverpool1]

theres a lot to admire about your sons attitude.....me, i would let him do it his way....but what do i know.....god bless..

 

[skipper66]

I am so sorry to hear about your son battling ALS at such a young age. I truly wish I could do something to help you and your son. I will keep you both in my prayers. Kim

 

[HelenL]

So young to be dealing with this... While I sort of admire his stubborness, he does need to move forward... And since he's living with you, you could set up some ground rules. For instance, tell him that if he refuses to use the walker and fall, you'll call 911 and get the firemen in to pick him up. Hard situation, but it's still your home.

What about taking online courses? Many colleges will let you audit them for free. His mind must feel like its atrophying along with his legs.

And is he able to use a scooter still? Maybe you could get a loaner scooter or pwc and say, let's go for a walk... maybe if he had a dog for a companion (I know, you'll be taking care of it as well), he'd be more likely to get out of the house.

Any social worker/counslor coming to the house? Even if he thinks it won't help him, it may help you deal with it. And btw, not talking to you for 2 days is just being a brat... he needs to get over himself about stuff like that.

Good luck to both of you!

 

[CGARS]

I'm sorry you son has been stolen by ALS.
And sorry it is affecting you so much too.

ALS robs us of our body, but not our mind and soul. With technology the way it is, there are many gadgets that can help your son enjoy life.

He needs to find some sort of purpose. Easier said than done, I know but once he finds that, then technology will help him cope with that purpose.

I wish you both the best of luck, and I hope he realizes that there is life after diagnosis.

Cheers,
Casey

 

[vzandt]

His cousin sounds special. Keep her around.

 

[sadiemae]

Hi Valya, We are still around. Pidge isn't on here much, but her son Devan is young too, and living his life. Maybe send her a message? I sent her a FB message on this! HUGS Lori

https://www.alsforums.com/forum/members/pidge.html

 

[Valya]

@ Daniiela I remember you also. And yes, you remember correctly, he's never wanted to discuss the ALS, always wanted to feel like he was living normally. Not talking has kept him feeling 'normal' for a few years but it's time for him to open up about it. He's so shy, always has been, when we have brought him together with other younger ALS patients, he's poliet and friendly but not willing to meet again. Thanks for your kind response.

@ johnnyliverpooll I love your name, not just because it contains 'johnny' but it reminds me of the Beatles and I'm a HUGE fan. :-D Thanks also for your kind words. I agree, I'm frequently humbled by my son's attitude towards this illness. He's never complained once, or tried for pity from anyone, or tried to short cuts due to ALS. If he really insists on doing it his way, we need to respect that but I just hate to see him missing out on the living he still has.

@skipper66 Thanks Kim, I appreciate your response and prayers. I'm sorry to see your Dad has ALS. I'll pray for you and your family also.

@HelenL I'm confused about some of your comments, such as 'What about taking on line courses?.... His mind must feel like its atrophying along with his legs' and 'not talking to you for 2 days is just being a brat..he needs to get over himself'.

1) What makes you presume he isn't in or hasn't attended college? I find your presumption and example that his mind is atrophying 'along with his legs' extremely insensitive and thoughtless, to be honest.

2)'being a brat'? Advocating tough love is one thing, but plain flat out rudeness is another. If you have nothing even remotely constructive to say, then please, don't bother.

@CGARS Thanks for your kind and thoughtful words. Yes, that's what we intend to help with, the life he has still to come. I have a plan, which I hope will work. I'm sorry to see you also have ALS/MND. I hope you are coping and living your life to its fullest. Good luck to you and you'll be in my prayers.

 

[Valya]

@vzandt Very observant, his cousin is the best. I love her so much! She brings joy to our entire family

@sadiemae I remember you, so glad you posted and thanks for sending the message to Pidge. :wink:

 

[rachelg]

Hi Valya

I am so sorry you are all going through this. As step mum to a 23year old I can understand how difficult it can be to discuss things that he doesnt want to. If our son doesnt want to talk about something - he just wont - and he isnt having to deal with this awful disease robbing his body.

I did wonder though, you mentioned that Johnnys speech is worsening. Our kids love technology - is there any chance you may be able to get him something gadget wise that might just open him up a bit. Like eye gaze or latest phone with speech tech - just thinking slowly slowly introducing assistive technology without it focusing so much on actual physical equipment (hope that makes sense) It may just be an avenue to introduce options into his life and open up eventually a chance to accept physical aids.

Would his cousin be able to mention things, sometimes things being said by mum or dad seem like pressure. Our daughter seems to be able to say it how it is and get away with it.

Thinking of you.