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SorrowfulJones

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Hi, gang. I was just wondering if I could get a rundown of some of the things I have to look forward to. My mom was diagnosed with ALS on 5 April, of this year. From what I've read online, she's bulbar onset, the primary, most highly visible symptom being her increasing difficulty with speech. Between that, the increase in falls and her growing fatigue and "awkwardness" over the last year and a half or so...

Anyhow, talking to the doctor (out of her earshot), I asked how long we had her for, and he said, barring a miraculous remission or amazing developments in treatment or a cure, give the general progression, we're looking at 3 years, maybe 4. She has a great deal of weakness in her right arm and leg, no stamina, no energy, the least thing seems to wear her out. She can't lift her right hand above her shoulder or lift her elbow very far. We've been giving her goji juice, and she seems to have been more active, but that might be more psychological than actual physical benefit.

So I need the 101 course, ALS Caregiving for Dummies. I applied with her for SSI to supplement the widows' pension she gets, but they've already turned her down; I know, reapply. But what else is available? How do I swing getting her on MediCare/MedicAid? Are there any other resources for paying her medical bills? When do I get her a wheelchair, how much is reasonable and should I get a motorized/electric wheelchair? She has asthma and mislaid her nebulizer - how important is it to replace that (I intend to, but there are seemingly a parade of other things that take precedence)? She wants to stay in her house for as long as she can, so I'll be dividing my time between here and L.A. for a while - where do I even start looking for someone to stay with her when I can't be here?

And what do I do when I can't maintain anymore? There are times when it feels like, any minute, every atom of water in my body is going to suddenly start pouring out through my tear ducts; days when I just get so god damned angry, and I can't think of anyone to be angry at or what good it would do - what do I do then? I have enough trouble dealing with my own depression... What do I need to do to assure her comfort and dignity during the time she has left, and how do I do it without losing what's left of my mind? Oh - and can anyone recommend any good chat rooms for this sort of thing?

Knowing there are others out there helps a bit - I look forward to hearing from you folks. Thanks.

Yours,
Sorrowful:cry:
 

brooksea

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Hello Sorrowful,

I'm sorry you have such a difficult situation to deal with. My husband has ALS, and it has been kinda "learn as you go" type thing. First of all if you/mom haven't been to an ALS clinic, that would be a great place to start. They can provide you with helpful information regarding the progression of the disease. Also, a social worker at the clinic could help you with advice on social security and at home care.

Another great source would be the ALS Association. They have detailed information provided in booklets that are free. These booklets explain just about everything you would need to know about ALS. In my state a nurse from the ALS Assoc came out to our house to evaluate my husband and to see what modifications might need to be made to the house. They have equipment that can be loaned out to patients when necessary. Support groups thru the association can give you insight into "real world" issues faced by PALS. Just register with association and they will send you what you need.

Did you apply for SSI or SSDI? ALS is an automatic approval for SSDI, but you still have to wait 6 months to start receiving payments.
Hope this helps a bit.

cj
 

nsmith555

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Sorrowful,
I am sorry you're in this boat, too! My mother was also diagnosed with bulbar-onset back in March. It has been an arduous road. I think what you're feeling is totally normal. And, unfortunately, we can't fix normal. I have questioned my feelings through this - I've had the depression, the worry, the fear and frustration and anger - sometimes even toward my mom. I feel guilty when I feel that way, but I wish she was more of a fighter. I try not to show it - I guess it comes off as more like desperation.

As your mother's child, I'm certain you will do the right thing concerning her comfort and dignity. Find out her wishes and help her to have as much information as possible to make her decisions. As far as your sanity - you will keep it. It is amazing how we seem to be able to rise to the occasion when we're forced to. I am amazed at how well I've handled this - I'd have never thought I could. I am a person of faith and I have found strength in God's grace.

This is a good place to vent and discuss. You'll find so many people who know exactly what you're going through.

Hang in there. You WILL be able to handle this!
Nicki
 

MarciaA

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SorrowfulJones said:
And what do I do when I can't maintain anymore? There are times when it feels like, any minute, every atom of water in my body is going to suddenly start pouring out through my tear ducts; days when I just get so god damned angry, and I can't think of anyone to be angry at or what good it would do - what do I do then? I have enough trouble dealing with my own depression... What do I need to do to assure her comfort and dignity during the time she has left, and how do I do it without losing what's left of my mind? Oh - and can anyone recommend any good chat rooms for this sort of thing?
:cry:

Sorrowful,

My sister was diagnosed in Feb of 2006. I can completely understand everything you're going through! I found a LOT of comfort here at this site. I know it's not exactly a "chat room"...but it gave me the information, feedback, support, and validation that I needed during those first few months! I would also suggest finding an ALS support group in your area. If you go to www.alsa.org, you can find the support group nearest you. I have gone several times with my sister and it has really helped!

Hang in there and please know that there are incredible people here at this site who are willing and able to give you advice or simply be a sounding board for you!

Marcia
 

CindyM

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Hi Sorrowful. I don't have much to add at this point accept welcome. I am sorry this is happening to your family. Cindy
 

SorrowfulJones

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Thanks, all, for the encouragement and advice - there are some handy tips I think I'll find useful.

The widows' pension my mom gets is from her late husband's Social Security (SSA), and we were trying to get her on Supplemental Security Income, not so much for the measly $32 a month as for the MediCare/MedicAid. Her bills just for the testing to diagnose this are considerable, even from such a fine teaching hospital as OU Med Center.

As for keeping it together, I frankly has me doubts. If I could get a break once in a while, that would help, but the folks who've sworn that they're there for any and all our needs suddenly become busy when I need them to look in on Mom during any brief absences on my part.

It's hard not to be bitter, and it's even harder to "have faith". God and I are not on the best of terms at the moment. A lot of the world's troubles lately boil down to the free will issue, but where does that apply to ALS?

I'm getting ranty. I'll be around and I'll keep you all posted. Thanks again. You all seem like such nice people - I'm sorry to hear that you're all going through it too. Why is it this never happens to the shit-heels out there?

Yours,
Sorrowful
 

saska

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Hi Sorrowful,

Perhaps there are local organizations that can provide you with respite care, so you can take some much needed breaks. For example, I think that in the Denver area there is a visiting nurses association that provides respite services free of charge. If you get hooked up with the local ALS Association, maybe they can point you in that direction.

I think shit-heels probably also get hit with ALS; you just won't find them on a forum like this :). And from what I've seen, there is no rule against ranting here...this is a good place to vent.

I am so sorry you and your mom have to go through this.

Best wishes,
Sharon
 

MarciaA

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Sorrowful,

If you are needing more people to be able to help your mom, try forming a "Share the Care" group. We are in the process of doing that for my sister. There's even a "how-to" book called "Share the Care" by by Cappy Capossela and Sheila Warnock. It may give you some ideas of how to organize peoples talents and schedules so that no one person feels overly burdened and all involved feel useful.

Marcia
 

sunnydays

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Sorrowful,

I also am so sorry for the heartbreak and stress loaded upon you. My husband was recently diagnosed. He and I are raising a teenage daughter with type 1 diabetes.
There seems to be no rhyme or reason.

I also understand about not being on good terms with God right now. Believe me, though, God will always be there. Mercy and grace will help get you through each day.

I won't preach. All the folks on this forum have been kicked in the gut with this beast one way or another, too. They have great wisdom and resources. Keep pluggin!
 

sunnydays

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Hey, Sorrowful~

Isn't there a big ALS Support group in the Dallas area? I know there isn't one in Oklahoma at all but the one in Kansas is huge, as well. I just know Borger is much closer to Dallas than Kansas.

The manual we received from the Kansas group was huge and full of lots of information. If you can't find info on a group, holler and I'll see what I can do.
 

SorrowfulJones

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Thanks, Sunny - believe it or not, Kansas might actually be closer than Dallas, depending on where in Kansas. Amarillo is smack in the middle of the North Texas Panhandle, and Borger is around 45 northeast of that. A quick skip across the Oklahoma panhandle (all these panhandles - no wonder so many people around here go into food service...), and boom, it's Kansas. Dallas is a 6+ hour drive, and Wichita, KS, is about 5 and a half! Whee!

As for god's mercy and grace, I think (being God and all), He could shed a little more on my mom and everyone else suffering this boil on the *ss disease (to say nothing of several other equally nasty diseases). Grrr [shakes fist at sky)...

Marcia - That "Share the Care" thing sounds like a terrific idea. I'll look around for the book, but as to how to find others in this area to "share" with, I'm stumped. Eventually, the time will come when we have to give up the house here and move to Oklahoma City, where there's better care in general, and we have most of our family. More family alone should help a lot. But Mom loves her house here, owns it outright, and wants to stick it out for as long as she can get away with it. We got her one of those medical emergency pendant thingummies, so if she has a fall when I'm not here, she can still notify me, a couple other folks, and the local 911.

Sharon - Yeah, shit-heels get it too. I guess they aren't as successful reaching out as wonderful folks like us. Anyhow, there are darned few shit-heels I can think of that I'd wish something like this on...

Thanks again, everyone - things will get taken care of, I'm sure, but it seems like a vertical climb, some days...

Yours,
Sorrowful
 

nsmith555

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Sorrowful,
Do I understand you correctly - you will eventually be moving to OKC? I live in a suburb of OKC. There is a wonderful ALS/MDA clinic in OKC - it does have a support group - I haven't been to the group yet, but the services at the clinic are very, very good and all the staff are extremely compassionate.

Take care, and I do hope that you see some of God's blessings while you're going thru this. I know I have.

Nicki
 

esrich

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11/2007
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Nicki,
I know this is in response to an older post, but we are going to the clinic in OKC on 11/5 and I wondered what you think about it. You said it is wonderful. Is it the one with Dr. Beson? We were originally scheduled to go to Dallas but insurance won't pay as much since we live in OK (Ardmore) so now we are going to OKC. Any info on your experience there would be helpful. Thanks.

Shelly
 

SorrowfulJones

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Shelly, it sounds as though you're going to the MDA's ALS clinic. I don't know about that one, since the doctor we were to see (Dr Cheema, who initially diagnosed Mom) had left to accept an offer from the neurology folks at St Anthony's. We ended up going there, and they were very sweet. I haven't heard much of anything about any ALS clinics - though I can't feature any of them getting bad "reviews". Good luck with them and let us know what you think. I'm sure we'll get around to calling on them for some services, eventually...

Cheers,
Sorrowful
 

esrich

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Thanks. I think the one we are going to this week is at Integris. I didn't know they had one at St. Anthony. I'll let you know after we go what happens. I know we didn't like the neuros at the VA center and they never would give a firm diagnosis. Just "come back in six months and let's see how you are." At this point we just want a definite yes it is or no it isn't. We can deal with whatever comes next. Again, thanks.

Shelly
 
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