Help for me and my family

Ok…this might be long. It’s also very personal and emotional.
What i need help with is getting my family (myself, my husband and 2 sons) more united. We are all supportive and understanding and we all have open communication. It’s somewhat limited with my sons, as they are teenagers, but they are more open than most.
So, in essence, the last 7 years have been really tough. I was injured at work which has prevented me from working full-time since then. Then 3 years ago my husband was injured at work and now can’t work. (There’s a lawsuit still pending, which we will get money, but who knows how much.) So we haven’t had a steady income since my husband got hurt. Then last year i fell 4 times in 4 months causing injuries to both knees and i haven’t been able to work since November of last year when i had my knee replaced for the 3rd time. I had noticed muscle wasting in my calf and January is started in my hand. Fast forward to April. I was diagnosed with ALS. Needless to say being faced with a fatal illness has rocked our world. The day i was diagnosed my husband was phsychatrically hospitalized. So shortly after i started my journey into spirituality and witchcraft. I figured something had to help with all the negativity and heaviness that has accumulated over 7 years.
It has helped me significantly mentally and physically. So im actually doing better mentally than the rest of my family, yet i still feel the heaviness. My husband is still struggling mentally and has permanent physical and neurological disabilities from his injury.
Since i have ALS, i have mobility issues. I care take care of myself, but i do need help with getting food and whatnot. My husband is good with helping me with that and the boys will if i ask. Im unable to do household chores now and my husband can only do light cleaning. My kids have chores and have to cut the grass, which is like pulling teeth and they can be very disrespectful when i remind or nag them to do it. My husband doesn’t ask them. Not that he doesn’t want to, but he doesn’t because he’s their step-father. My husband has been with us since my boys were 1 and 4 years old, so he really is their father.
Anyway, i lost my train of thought…
Oh, so what i need is the boys to be more respectful when i ask them to do stuff. They also need to step up and do more. I’ve spoken to them about how they have to help more numerous times. my husband has to do better with asking them to do stuff and talking to them about emotions. No one has spoken to me about how they’re coping with ALS. It just seems we can’t find a balance emotionally or as far as our family functions. As I’ve said, my husband and are supportive and understanding with each other and our boys. I have pretty good communication with my kids. Im closer with them than my husband. I just don’t know how to get us working as a team and be balanced individually and as a whole.
Im feeling lost and feel like im changing in positive ways, but the rest of my family is stagnant or resistant to change. I really dont know what to. I don’t want to feel helpless or hopeless towards my family. I don’t want to feel the heaviness of the energies and emotions in the house. I know i cant control anyone is but is there anything else i can do to change it or change my thinking to make it better? Is there something i can do for them to help them?
I appreciate you all listening to my rambling. I feel this is a safe space and you all are kind and supportive. :purple_heart::heart::kissing_heart::cry::frowning::face_with_spiral_eyes::weary::sob::purple_heart::orange_heart::blue_heart::black_heart::slight_smile::sun_with_face::new_moon_with_face::rainbow::heart::kissing_heart::blush:


Oh wow! That’s a tough situation! I can imagine how frustrating this must be for everyone!

I think just asking about mental health can be helpful. It can be a little awkward at first and teens are, well… teens… but I think being able to ask about mental health makes it easier to share about it.

My teen came out last year and now I frequently just say “mental health check?” To them… it’s our code for - I’m checking in on you, let’s chat…. We’ve talked about how important honestly is for these conversations, etc.

I imagine your teens are probably distressed with your I’ll ess and might also be mourning their idea of a “normal teenage life”. They may feel like having to do more is unfair or even that it isn’t their responsibility. I imagine you and your husband feel the same!

At any rate, I’m rambling now too… just ask!! Ask often and also share your own thoughts. I think you have to normalize it!


I will. Sometimes I forget to ask how they’re feeling instead of just how are you :heart:


I get it! It’s super hard, but so important. I think you’re off to a great start and I wish you the very best.


I don’t have much to offer but hugs. Is there any self care that you could do? Wash your face and put on lip gloss? Put on the necklace you only wear out? That used to help me. Get/ask for coffee or a comfort drink and get yourself somewhere quiet and think of nothing except the drink?

I was thinking before when you mentioned ALS that you probably need to hear a flood of sympathy as much as you need to hear “You just need to find a way to function” but I will say that you seem like one tough b*tch and I think you need to take time to breathe each day. Hang on before you’re sick of hearing that too. Literally when you sit to pee, take a minute, or 30 seconds and pretend you’re comfy and take a good full body deep breath.

As far as family all I got is what I’ve said to my son “Look I’m sorry that you have 2 parents that are both physically disabled. It sucks and it’s not fair but that’s what you got. I’m sorry that you are responsible for more than you should be but we need your help. I’m sorry for that too. Oh and I love you” That last part fits with his personality and sense of humor
:heart: :white_candle: :people_hugging:


@Sivonnah Firstly. Big hug and kisses, it’s tough and it’s tough on your kids too to see their family suffer. Teens process emotions differently, but they will get more intune with helping as they grow. I think for them, are they in school? Is there a school councillor that you can arrange that can talk to them. Sometimes kids take advice from an outsider better, and they may open up to them, as to how they feel. I have an ASD son (18), and he’s done well with college support teams. I don’t know how it works in America, is that where Pennsylvania is? I work in Care here in England, and when a family has multiple disabilities to cope with, they can apply to the local authority for financial assistance to pay for a carer, that carer can help with household chores, shopping tasks etc aswell as health issues (though here that would be a district nurse). Here you would ask your GP (general practitioner doctor) to be referred. You may have already done that, I don’t know, just thought I’d mention these.
Know you’re all in my prayers.
Blessed be :sparkling_heart:


I don’t have much advice on wrangling teens, but i do want to send you love. It must be so terrifying to go through this.

I agree with @tracyS in that you need a worker. I got Sally through the DHHR here and she cooks, does laundry, light cleaning, and errands for me.

I don’t know what I would do without her. Yesterday she got my groceries and lunch and we painted our nails. She’s become s very good friend.

Good luck and I’m sending your family good vibes.


They are in high school. 10th and 12th grade. I just talked to their guidance counselor the other day. My older son talks to her regularly and shes good at checking in on both of them. I only talked to her about school though. It would be a good idea to talk her about what’s going on at home.
Pennsylvania is in the US. We do not have carers like you do. We do, it’s through the government and you have to meet physical and financial need. They want 5 years of our bank statements. Our deed to the house. Papers for our cars. Then they told us we have too much in assets to qualify! Grrrrr :rage:
Thank you for your suggestions! Im definitely gonna reach out to their guidance counselor. Shes a very lovely lady.
:heart: :people_hugging:


We’re not eligible for those services because we have too many assets. Which is a joke. We have a house and 2 cars. Mortgage on the house and loan on 1 car. And $5 in our bank account! Lol. But we have too much to qualify financially. The only income we have is my social security disability for a family of 4.
Thank you for the kind words and hugs! :heart::blush: :people_hugging:


@Nixi I’ve heard from a few people that I’m pretty tough for handling all this with a positive attitude!
I really like your suggestion of what to say to my kids. Im definitely going to use that! Im working on mindfulness and meditation. I actually spent a lot of money to get my hair cut and colored last week. I felt sooo pretty! I forgot how good that feels. I’m working on being kinder to myself and my family. Ive had to learn acceptance too. When the boys do their chores it’s not as clean as I get it, but i realized they at least did it and it’s cleaner than it was. They’re not going to do it as well as me and that’s ok.
Thank you! :heart: :people_hugging:


Well, that’s awful @Sivonnah! I wish i had another idea.


@Sivonnah That’s so unfair. I’m so sorry :disappointed:


First, I’m so sorry you’re having to go through all of this. I can’t imagine what that’s like for one person, let alone how a family deals with everything!

I just want to second what everyone else is saying. Having someone for your kids to talk to about everything is a great idea. It may even be beneficial to have everyone go to family therapy. There, everyone can say how they feel in a controlled environment, with someone to help move the conversation along or identify emotions.

I’m sorry to hear that the state isn’t covering help for you at home. I think you may have more luck with that going through your doctor. They have more options available to them, and they might even know how to help you get around the government’s requirements!

In any case, you’ve got my thoughts and good vibes! :smiling_face_with_three_hearts:


Your personal strength is OUTSTANDING! :heart_eyes:

From a mundane perspective, I would say to consider contacting your provider or pharmacist about the Shingrix vaccine as numerous neurological and neuromotor diseases also have herpes connections. About 90% of humanity has latent herpes.
Also, please consider contacting your state’s social services programs. Maybe you can get some outside help which will alleviate some of the obligation stress.

You MUST allot some time for yourself! You are an amazingly strong and resilient person. That feeling of positive change proves how powerful you are :purple_heart:
Sometimes difficulties like this test bonds temporarily, then later on, maybe years from now, one of your sons tells you how you kept the family together during the most difficult time in their lives. How that shaped them and made them realize what personal strength really is!

Wishing you much love :two_hearts:


I did some research because well that’s what I do. I remembered seeing a few things overlap when I was researching concussions and treatments for brain injuries and just plain symptom relief.

I am not a medical professional, I am not telling you to do any of these things. At most I am saying that one could ask a Dr if any of this would help or if it would do any damage to try.

I was given a stack of research by a co-worker many years ago about Vitamin C. Massive amounts of Vitamin C has been shown to do some amazing things and could probably be found in alternative treatments articles. Passing through a nasty cold very quickly, Fibromyalgia - I just remembered that one but I don’t remember what it is said to do or why. At the time there were European countries testing Vitamin C through IV for cancer treatment. The great thing about Vitamin C is that most bodies are able to pass extra with no issues.
Vitamin A, I don’t remember why but it was mentioned in ALS research.
Coconut oil - my understanding is that is it mostly theoretical with a small unofficial trial. The general idea is creating ketones and it’s kind of like “here attack this instead”

Lastly is THC and CBD. Different strains do different things, alleviating symptoms like digestion, muscle spasms…

That one I came across for rebuilding and brain cells from concussion. It’s a little more than theoretical for brain injury and I believe mostly for managing ALS symptoms with some theory that if may at some point be found useful for slowing progression. If you were to go that route and if where you live has legalized medical use, dispensaries usually know a thing or two. If not they’re are a few of us here that could probably tell you what we use for what. Purely for a tidbit story about our lives of course

Again ask a medical professional before doing anything.
When I find some odd supplement type treatment I usually just ask the Dr if the odd thing I just read about would do any harm. I usually get a go ahead along with a friendly laugh. My primary who recently changed to a practice too far away for me would laugh and then suggest his own. At one point he told me to go learn an instrument to help with recovering from brain injuries

Ignore me as crazy if you’d like
Admin I’ll understand if this is taken down, no explanation needed


I do not think you’re crazy! I found the info very helpful. I do use medical marijuana but i dont think they know what works for ALS. But I’ve found one that helps somewhat. There’s a strain called Steven hawking that’s great for ALS. He had ALS.
I believe any form of treatment is worth looking into! Thank you for your support :pray: :heart: :people_hugging:


I do have a lot of resources that have helped. The ALS association and the social worker at my ALS clinic helped me through the application process. We are doing some research on this problem. Just takes some time.
My husband and I are trying to get everyone to see his counselor for a family session. Trying to get our schedules coordinated. Boys don’t want to go lol.
Thanks for your support! :heart: :people_hugging:


Thank you! :heart:


Ehh I’m not surprised the boys don’t want to go :laughing: I am not opposed to the occasional bribe for getting children to do things that need to be done, even if they don’t want to :joy: I hope they come around to it, even if it’s just to get some ice cream or a nice dinner or something :rofl: