New here. Facing challenges

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didittomyself

Member
Joined
Jun 26, 2015
Messages
10
Reason
PALS
Diagnosis
06/2015
Country
US
State
AR
City
Little Rock
I think part of what is also bothering me is that as I've earlier this year I became single and am now living on my own. I wonder how others have coped in this way? Thanks in advance. good to be here on this board.
Bear

I am also in the same boat. I have zero family support. I am looking at going from my house to a state-funded facility. (I am not a veteran or financially well off.) I am currently on FML from my job. This is one of the many reasons, I am not coping well with this. I am new to this board but its seems most of the PALS that post here are 1: super human beings and 2. have great family support at home.

I can still walk a little and use my arms and hands and talk. (very grateful for that) but i can no longer clean my house or upkeep my yard. I also gave up driving. I have a friend who buys my groceries once a week and does a little house cleaning but she lives 3 hours away. I am basically living off of Ensure and whatever she cooks once a week for me. She as informed me that after this weekend she won't be able to help for a couple of weeks. (Another reality for me, life goes on the the rest no matter what you are going through. Don't get me wrong, she has been an Angel and I am so grateful for her.) Another friend mows my yard about every two weeks. Another friend bought me a month supply of the Deena Protocol supplements but I have not taken them yet. (Probably, a waste of her $390.) These are all wonderful friends, i am very thankful for them but they can only do so much. (what they have done has been awesome though.)

I had been in denial about whats going on with me but now I am depressed and fight anxiety all the time. I can't watch TV or listen to the radio anymore and its very hard for me to go outside in public. I read the bible a little and talk to people on the phone. But now i am becoming a broken record. I am looking for a magical answer and there is not one for me.

On Monday, I go for my second opinion. After this appointment, I am going to have make to big-boy decisions. In all honesty, as much as I don't want to die, I wish I lived in Oregon so I could legally have an option how i wanted to end my life.

Well, I need to take a break from this. I hope one day, i can be more positive.
 
are you in touch with the ALSA or MDA? They will provide advice and assistance.

>On Monday, I go for my second opinion. After this appointment, I am going to have make to big-boy decisions.


like all the others, sorry to meet you here but welcome!

Try to go with the flow, expect fear, anger, bitterness, and a new awareness of life. I have

found that being active here on

everyone progresses differently, so don't plan for 'stage' -- take it as it comes.

get a referral

to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease)

experienced!



Anxiety can be a real problem that can endanger your physical health. Make sure you tell your

medical practitioner what you are feeling as well as how you are feeling.




Max - Thursday, July 02, 2015 10:15:51 AM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


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I moved this from another thread as I feel it deserves its own thread
I am sorry for your challenges. You are certainly not the only single PALS. For example Dalvin who does not post here any more certainly managed ( manages) at home without family support. This has been topic on the PALS face book group as well
I understand about not being able to do all the households tasks. They can be pretty exhausting and not driving is a huge problem. Why can you not do simple meal prep if you have your hands still? Living on ensure while you can still eat regular food is not good for you.

I hope you are getting help for your depression. Maybe I am wrong but it sounds as if it is taking away things from you prematurely
Have you tried to get any homemaker services? That might help?
Good luck with the second opinion
 
I'm so sorry you are in the current situation and are feeling the way you are. Here's some thoughts that hopefully will help you.

As far as the house have you considered getting a roommate to assist your around the house in exchange for free rent? I have a friend who has been disabled since his teens and he has used this for 30 years to help out.

I would suggest very strongly getting on Ativan or something similar. I find in addition to helping with the anxiety it also seems to help with my tremors.

Please do not waste your ability to eat normally, there are many on here who would give their left (fill in body part of choice) to do so. There's a LOT you can do to facilitate good easy to cook meals. My wife and I regularly cook a steak and the take the leftovers and dice them up and pre-make Quesadillas that we can simple throw in a pan and heat up. In addition to being much better for you it also saves a lot of money. I'll be happy to post more recipes and tips if you want.

Make it a point to get some sort of exercise. In addition to keeping you mobile and healthy it will also help with the depression. Likewise establish some social connections with those in the ALS arena. I've found that a lot of folks who don't have a direct connection to the disease tend to go into overload mode after a while because ALS is not at the center of their world, it is however at the center of yours.

Which brings me to the next point, The more you expand your world the less ALS is the center of it. Barring a cure in the near future, you're going to die from it, I'm going to die from and everyone on this forum who has it is going to die from it, we may as well all live as much as we can until the inevitable happens - which it will regardless if you have ALS or not.

My Mother after her stroke went through a period where she was constantly saying "I wish I was dead" and I'd tell her "Mom, that's going to happen anyway and a lot quicker than you think so you may as well try to enjoy what you can while you can".

It's a tough disease no doubt but I'd still take it over a 6 months to live with painful chemo/radiation treatments or any other similarly painful ways to die.
 
Have you looked at long term care in your area? Currently, they are sending me an aide 5 days a week who can 1. Do light housekeeping, 2. Cook for me, 3. Send me prepackaged meals that are easy to make in the microwave, 4 help me bathe, dress, ect. 4. They are also in the process of getting protein shakes approved for home delivery for me. They also provided such things as a raised toilet seat, and a shower chair, which are things insurance does not help with.
 
DIDITTOMYSELF: Even your screen name is depressing! (I'd change that.) :)

But all is not lost.

I think the key to living with this disease is to try to enjoy each day as it comes. Of course, you've got a bigger challenge than most. I would definitely see a doctor about anti-depressants or an anti-anxiety treatment.

Call the Independent Living Program in your city. They help you do exactly what their name says.

If your income is severely limited, inquire into Medicaid.

As an ALS patient, you're probably eligible for Social Security Disability Insurance. This includes Medicare. ALS gets expedited service under the TERI program.

Keep your weight up. This is a good time to eat well. There are food taxi services and even Meals on Wheels.

If you decide to take the Oregon option, it's not too difficult. Contact CompassionAndChoices dot org and ask them how it works. They can refer you to a doctor, and the doctor is the one who needs to be satisfied with your residency status. So you could possibly move to OR and take care of that business if you wish.
 
Thanks for everyone's responses. My best friend of 35yrs just mowed my yard and another friend just bought me food. I am so thankful for them being in my life.
 
We needn't get ahead of ourselves, but no one needs to travel to Oregon or Washington to "die with dignity," if you're defining "dignity" as the hour of your choosing.

Ditto, you've gotten lots of thoughts, and it sounds like you have some great friends. Use the support you have now --and can obtain -- to its fullest, and the disease will not have the hold on you that it does now, for some time to come. Try to make some lists of the things you'd still like to do and see, and what it would take for them to happen. If you're not living, you're dying, and biologically, you're a ways off.

And keep posting -- we are here for you.

--Laurie
 
Laurie...you're a blessing to this forum. You're very informative and compassionate...not always an easy combination to find. I appreciate you very much!
 
That's very kind, Jeanau -- thank you!
 
hey did it, this forum works so work it! we are here for each other and that my friend includes you! when i get down i am my worst enemy and crap between my ears seems to make sense but in reality it's never how i perceive it . we are all terminal everyone on the planet no reason to rush it. more will be reveled, BREATH! (while you can) and EAT. 1love chally
 
Hi Didittomyself, Sorry to welcome you here, but welcome.

I am in a similar situation. Alone without a permanent home and no family so-to-speak. Seems grim. Yes. Has it been grim. Yes. But during the last two weeks, I have found such solace in this forum. When I feel scared or alone, I log on here and read the stories, experiences and advice of other PALS. I have been blessed with such support here and I am learning to put one foot in front of the other. I even genuinely laughed the other day. It felt amazing. I am reminded here that while my body might be failing my soul is very much alive and capable. There is a community here that is comforting and unlike no other. When all seemed to be lost, I am again finding hope -- and joy.

Please stick around here. You are not alone. And challenges that you face will be much easier to overcome with the help and advice of others on this forum. Their experiences and generousity in sharing their experiences is so valuable.

I'm glad you friends came through the other day. Remember you are not alone.
 
...genuinely laughed the other day. ...
I am reminded here that while my body might be failing my soul is very much alive and capable.

That made my day. Thanks.
 
LifeEnthusiast, you speak from the personal experience of one who is going it mostly alone, too. Thank you for your uplifting words. You made my day, too. How you expressed the meaningfulness of this forum for you is very touching.
Charlene
 
You are ALL so wonderful. Atsugi you made me laugh out loud. Didittomyself there is light at the end of the tunnel. My husband has an amazing support system and yet he felt just as you did. He was very angry, depressed and had debilitating anxiety. I thought we would never smile again and that laughter was a very distant memory. The first step was anxiety medication and then anti-depressants. They took the edge off his emotional suffering and enabled him to see the wood for the trees. With time he was able to learn to smile and laugh again. I wish that for you. Everyone here has given valuable, practical advice. Please keep in touch and let us know how you are getting on.
 
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