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chrisroski

Active member
Joined
Apr 12, 2012
Messages
93
Reason
PALS
Diagnosis
01/2012
Country
US
State
Pa
City
Philadelphia
I was diagnosed in Jan. with PLS which I think is probably ALS, the reason I think that is because when I had the peg tube put in the diagnosis on the paper said Bulbar ALS. I can no longer talk, I do have an IPad which helps, but it takes so long to type things out, I just find it very frustrating. I can't eat at all now except for this formula. Everybody says be glad your alive, WHY? What the hell is there to look forward too, wheelchair, paraylsis, I don't want that. I am having a very hard time dealing with not being the person I use to be. Working everyday, running here and there, talking, eating, and that is all gone. I know I sound like a cry baby and I guess I am, but I can't help it. I do not know how people with this keep their spirits up, I truly don't, and to make matters worse, my husband and I have been separated for 14 yrs and I live with someone, who does nothing but listen to his talk shows on the radio, watch tv, smoke cigarettes, drink coffee and eat. He barely even knows I am here. The only time we go anywhere is when his check comes in a he wants to go the casino. Now I like to go too, but he always spends too much money and then there is no money left to do anything else. He won't walk a mall or a store, go just for a ride, anything. I don't know how much time I have & neither does he, he is 67 & has prostrate cancer, but is doing well with treatment, I'm 64 & they can't do anything for me. He wants me to take my 401k out (for gambling) and I wont' do it. I don't have all that much, I might need it. I think his mad goes it goes to my 2 girls & grandkids, well that's the way it is. When I worked I paid for everything, vacations of all kinds and when I moved in I re-did his whole house. I have my youngest daughter here, she had a drug problem and now lives with us, but I am considering moving out and living with my oldest daughter and 3 kids, but not sure I could take it all day. I can't afford my own place, so I am really stuck, but I am so bored, I want to do things b/4 I can't anymore. Sorry for all the negativity, but that is the way I feel.
 
Sounds like you have reason to be down. It's a normal response to being diagnosed with diseases!

Are you getting SSI/SSDI? If not--apply yesterday! Would you get enough on that to be able to afford a place perhaps with just you and the one daughter at home?

Don't let anyone browbeat you into spending your savings! Why did they diagnose PLS if there are LMN issues? I'm a bit confused by that?

There is always reason to go on, hon. There are a great many folks here that are more than happy to listen and be there for you when you're low. It's hard when you feel like you're alone in the world.

I'm guessing you're mobile? If so, take some of your hard earned money and have some fun for YOU. Travel if you want. Do things you want to do. Life's too short to be unhappy.

Wishing you the best.
 
It's very important that your d x be correct in order to get disability. Your situation is very sad. I think perhaps moving in with the eldest daughter temporarily, til you could sort things out, would be a good plan.
 
I agree with everything that has been said by notme and CJ. So sorry you're going through this. It's a must to take care of your emotional well being too. Do as much traveling or other things that you're still able to do and have some fun! And proper diag nos is is important too. Let the docs know they cannot have it both ways. It's either one or the other. With pls disability takes longer to get. With ALS its faster. Praying for you Chris.
 
Chris, I am so sorry for how you are feeling right now, I can truely relate, for me sitting and doing nothing is so dang hard, I ask why all the time, the days just go by and I grab at every joyful moment I can by proxy through what family are doing, and also so many hard decisions to make. My thoughts and prayers go out to you. {{HUGS}}
 
chris i agree with notme.........put yourself first,there are times when you have to be selfish and think of no1.
leave the leech,write a bucket list and go enjoy yourself with your hard earned savings.
we all have got down by our situations and coping with disability so we can so relate to how your feeling.
cliche i know but i always think that i am so much better off than thousands,millions of others......this world is a cruel place to live and we have to count what blessings we have and be thankful.
(((hugs))) from accross the pond.
 
As someone who comes off as universally upbeat and cheerful, let me assure you, we all have these very bleak times. I find myself that I simply don't post when I'm in them, for me writing about it in too much depth actually deepens the feelings of depression. Whether you end up with PLS or ALS as a more accurate diagnosis, it sucks! The bulbar/pseudobulbar part of it sucks more than the limb bits, too.

I've been where you are, struggling to communicate with a speech device, frustrated, lonely. I went to a family wedding in which during the whole reception, only one person was patient enough to talk to me. I've been hung up on many times by even doctor's offices when trying to schedule an appointment using a speech device. The eating problems are socially isolating and sap your morale to boot! The wierdest part, for me, is that I become a much more sarcastic person when I use a speech device.. not just in what I "say" to people, but even in my thinking.

My advice for people who say nice-sounding platitudes but don't deal with your day-to-day life with you: ignore them. They may be well intentioned, but they are too ignorant to be helpful on their best day. They don't, can't understand. Ignore the people who dig on you, too. The only people who can really speak to you are the ones in the trenches with you, and it doesn't sound like you have anyone like that. Years ago my future husband would get mad at me for not taking care of myself well, of messing up my health by pushing too hard, etc and I rightly told him that he got no input on that level of my life until he bought into it. When it went from "you should, blah blah blah" to "we should, blah blah blah", then he could have a vote. Sitting around and gambling with your money does not a vote buy.

This life is hard, and there's no way around that. I think the ways people keep their spirits up have a lot to do with their religions and philosophies, and I can't presume to guess yours. I think the only universal there is that it is possible to live with this hard, hard thing, to even find meaning in this life. I don't know if that helps you, but seeing it was possible for other people gave me hope.

And please, please always feel free to rant here. If you can't do it here, where are you going to?
 
*LIKE* What Beky said!
 
So hard the situations we find ourselves in, especially after working hard our whole lives, and doing the right thing.

A couple of things I'd like to add: if you were married for more than 10 years to your spouse, then you may qualify for SS under his benefits, which may be more than yours; not sure how it works with disability.

In my state, even though you're separated, you're still considered legally married, and if you don't have a will, guess who gets everything, including your medical debts (may not be true for that depending on the paperwork). Make sure you have your papers in order.

Now onto the selfish man who isn't there for you... he isn't there for you now, what will you do when things get worse? Get out and do something for yourself; If you're still mobile, go to the senior center and play cards, go to the mall, go on their trips. Move with your daughter if bf doesn't shape up! Who pays the bills where you are and keeps everything running where you are? I bet it's you. DON'T enable him any longer, shape him up or you'll ship out. Go on strike...

Good luck... I'm in a similar rock and hard place, and get down as well... that's normal. Then look for the little things that will help you through your day, go OUT and do stuff for yourself. Bring a card to hand to people to let them know that though you can't speak, your brain is perfectly fine.
 
Sounds like you need to surround yourself with people who will appreciate you and love you and not use you. I vote for living with the grandkids. They make you feel so good, love unconditionally and they make you take a second look at life. They see the important things and appreciate everything. Don't give your money to someone to gamble...it will be gone in an instant. How selfish. You need less stress, more love and happiness...and life is worth fighting for, even if right now you don't realize that. I don't know you but I am sure you are a wonderful person, someone your family needs and loves. A disease can't take that away from you:)
 
I'm so so sorry. That all sounds so very hard, and at such a time when what you need is support. My only advice (and this from an introvert) is to take help where you can get it. I have never been a person who asks for help, but every time I take the risk and do so, I'm pleasantly surprised by what people are prepared to do. See if you can find the energy to put yourself first, and work out a way to get some help - from family certainly, but from others too. You may be suprised.

All the best.
 
1st I want to thank you for all your responses, I do appreciate it. To answer some of the questions, I do get diability from SS, my doctor put on the letter that I probably have ALS, this is not a final diagnosis. I saw neuro on tuesday, see my legs & arms are very strong they tell me, so I am still mobile, mine is all in the mouth area She called it Bulbar Palsy, but that it takes 2 or more years to rule out ALS completely. So I use an Ipad for speaking & have the feeding tube. I don't miss the food so much, but I do miss the talking, cause you do feel left out sometimes, depends who you are with. I don't get enough money to move out, I have medical bills from the peg surgery, cause medicare only pays 80% and a 2 credit cards, cell phone, life insurance, etc. My boyfriend pays the bills, I used to pay half when I worked, but not anymore. For some reason that does not bother him, what bothers him is that I won't take that money out,see my oldest daughter & him do not get along, and she is my power of attorney, and he is so afraid that he will keep all the money and not give 1/2 to her sister (my younest, who he does like), well it is clear stated in my will want I want and don't want. Everyone get a copy, and if she don't do what I ask I won't be here to do anything about it, that's the way it is. I even pre-arranged my funeral so my girls wouldn't have to do it. I have all my papers and instructions in order, but he has this obsession about this money, Honestly, it is not that much, I didn't work when my kids were growing up, my husband worked two jobs to put them thru catholic school. I started working after we broke up, so 14 years is not much of a nest. It would have been a little longer, but company went bankrupt. I do not want to leave my kids with medical bills, or any other bills if I don't have do. One has 3 kids and the other is just getting on her feet after a severe drug problem, they may need that money to pay bills, or I might need it for something more important than a casino. He asked me again today, I told him in no uncertain terms, don't ask me again, the answer is NO, and if you don't stop bothering me with this, I will move in with my daughter, his choice, balls in his court. My doctor has her own foundation for ALS her in Phila, so I told them I want to volunteer, and I am going to start going places by myself, I'm tired of sitting here, I don't know how long I will be walking and I don't want to waste a minute & the next time my daughter ask me to her trailer down the shore with the kids, I'm going, back up the formula, pills and hit the road. I have had it. I think all of you gave me the courage to say to him what I had to say, even if it was on the ipad. Thanks again God Bless Us All
 
First, see if you qualify for more social security, based on income, not what you worked (medicaid vs medicare?) If you qualify based on your diagnosis, it may pay retroactively for some of the medical bills, though that's probably a long shot.

If your husband worked and you were married for more than 10 years, then you may qualify for his retirement amount... not sure how that works with disability but its worth checking out.

If you die with medical bills, your kids shouldn't be getting the bills, but they will come out of your estate, which means out of their inheritence. You may be able to set up some of your money right now to go "in trust for the benefit of..." to protect some of it. I'm dealing with that right now. You should see a lawyer to see if you can protect some of your assets.

And by the way, congrats on deciding to LIVE again, why wait around to lose more function, go for it now! :)
 
definitely check into medicaid! You may qualify for help with those bills. They can TRY to get money from your kids--but it won't work. They are in no way legally responsible for your debts.

I taught school for a while and was a cop--but I spent many of my working years volunteering on fire departments as an EMT-I. My SSDI is minimal, so I do get medicaid, which helps, as they pay my medicare premium at least.

Glad you decided to do for you. Like an idiot, I cashed in my $ from beinga cop. Wish I'd left it right where it was. Did the same with my teaching $.
 
As long as your kids don't sign papers saying they will be responsible, they have to be very careful about what they sign.That is the only way they could be held liable for any of your bills. Check on getting you a Dynavox computer it will also talk for you
 
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