Old 10-17-2012, 09:32 PM #1 (permalink)
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Default If you could improve one thing about ALS...

Hi all, I am brand new to this forum. Happy this forum exists, not to happy to need it : / My mother in law (MIL from here on out) was just diagnosed with bulbar onset (probably familial) ALS about a week and a half ago although they have been suspecting it for awhile. My husband and I are her primary caregivers (mostly me as of right now). Man, it has been a whirlwind trying to figure everything out on top of coming to grips with this diagnosis and realizing my husband has a 50% chance of getting this disease as well if it is indeed familial (working on trying to get insurance to cover the genetic testing, which I know only accounts for 20-40% of familial cases...).

I work in healthcare field and I am currently earning my Master in Science Nursing (hence part of the reason I will not be able to provide full-care to my MIL). I am about to start a project and I want it to focus on ALS. So, long introduction, but my question is, if you could improve an aspect of being a PALS or a caregiver for a PALS, what would you like to see happen? While there seems to be immense information and resources for PALS a bunch of different places, I am coming to feel like there are definite gaps. For example, paying for long-term caregiving services? Healthcare workers knowledge of ALS? Coverage gaps? End-of-life and hospice coverage?

I appreciate any and all suggestions, and I hope to eventually help improve at least some avenue of this horrible disease as my masters will be focused in Program Development and Implementation.
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Old 10-17-2012, 09:58 PM #2 (permalink)
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Default Re: If you could improve one thing about ALS...

One of my biggest gripes is that they exclude PALS from trials after they have had it for 2 or 3 yrs.
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Old 10-18-2012, 05:20 AM #3 (permalink)
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Default Re: If you could improve one thing about ALS...

Long term care and healthcare workers knowledge of ALS are big ones for us.
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Old 10-18-2012, 06:41 AM #4 (permalink)
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Default Re: If you could improve one thing about ALS...

This may seem minor in the big picture...but...before there was two people doing everything around the house. Now there is one. The effect on cals is enormous. Some of us cant afford help so we do it all...when I'm shoveling and taking out the garbage and doing the shopping and fixing dinner and going to work and doing the laundry (you get the picture) and running to get what he needs..when do I relax. Never. Help for cals would be nice.
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Old 10-18-2012, 07:58 AM #5 (permalink)
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Default Re: If you could improve one thing about ALS...

vzandt. I couldn't agree more.
If some of the new drugs are able to really slow the progression down, it becomes even more important. The longer you act as a CALS the more toll it takes on the body and mind, making us ever less effective as caregivers. Just turns into a vicious spiral. I know that what with being primary caregiver to my wife, and still trying to work enough to keep uo the house, my parenting is effected to a huge degree. Caregivers should get paid, or there should be some means of helping families pay for outside help.
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Old 10-18-2012, 09:06 AM #6 (permalink)
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Default Re: If you could improve one thing about ALS...

More help in the house for CALS. Couldn't agree more.
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Old 10-18-2012, 10:57 AM #7 (permalink)
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Default Re: If you could improve one thing about ALS...

Thank you all for your input! I truly appreciate it. I personally feel that there is a huge gap in providing care for the CALS, and although it saddens me that I am not the only one who feels this way, I am happy to know that I am not alone. Now, what to do about it!?

From what I can tell, aside from hospice and limited home nursing visits, no caregiving services are usually covered by insurance? Is it still the case that getting hospice for a PALS is pretty tough? From what I've read online it seems that, especially with Medicare, the guidelines are stringent and there is a cap on the number of hospice days allowed?


(sadiemae, I also totally agree with you. It seems like every study I look at is "diagnosed within the last 9 months, last year, etc." Having a background in research, it is a huge issue when you are only looking at certain snapshots in time of a given population. It makes it hard to generalize to the whole ALS population, although with the unpredictable nature of this disease I guess I am going to have to get used to that! Great point! And if I ever get the chance to work on an ALS study, I will definitely bring this issue up!)
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Old 10-18-2012, 07:51 PM #8 (permalink)
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Default Re: If you could improve one thing about ALS...

What I would change:
1. A Cure... that is my number one!
2. And, if no cure... That the end would come sooner before becoming totally paralyzed! I don't want to see my husband suffer! Maybe that is wrong, but I can't imagine him living like that. He is afraid! I am afraid for him!
3. So, if I can't have the wish to not see him suffer so, I would want others to have knowledge for support. The VA benefits are priceless and for lack of a better word to express: helpful! But, I would change the mountain of paperwork, the fact that papers get lost, the very slow snails pace it all happens! I would hope, want caregivers to gain more knowledge... One Story: We had a nurse tell my husband about a patient she has that has been in the worst last stage for five years unable to do anything for himself...giving all the sorted details...Why was that something she needed to tell my husband? Really? We have a beautiful handicapped room addition but it took forever to pay the contractor. He has a business to run and two small children and a wife at home to support. I felt so upset that our hands were tied to get him paid! On and on with issues...It was stressful ....and the disease is stressful in and of itself!
By no means to I want to sound ungrateful. We are forever grateful to the VA!
I hate ALS!
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Old 10-21-2012, 03:53 PM #9 (permalink)
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Default Re: If you could improve one thing about ALS...

The medical community is very uneducated at large about ALS, as are the people that work in govt. offices. X will have to call us oe x will have to tell us that himself, or x will have to provide a hand written letter explaining why...

Too bad X can't speak, or X can no longer write, or X has FTD and is no longer able to understand your questions, let alone answer them.

My insurance will pay lor nursing home care...after I pay the first $275 per day.

Seriously, lack of knowledge by medical professionals at large would seem like a huge issue. I can't count the posts I've read that have mentioned doctors say there is no pain. Or docs say there are no mental issues. Themlistmof mis-information goes on.

Hospice seems great on one hand, but you better not need any durable equipment once you're on it. VA is mountains of paperwork. There is no help for caregivers. 2 or 3 hours a week doesn't provide respite, it barely gives time to buy groceries.

All PALS should have the option of having live-in 24/7 care if they so choose without their spouse or families exhausting themselves to care for them.

It saddens me to wonder how many PALS gave up the fight moremformtheir families than for themselves.

And trials? Most have had symptoms for longer than allowed to even be considered for trials before they are even diagnosed. The drug companies aren't getting it. Docs are taking forever to make the diagnosis, so PALS windows of opportunity for possible trials are closing fast. Some wait years. Why? Often because the doctor doesn't want to make the diagnosis and sends them off to another for yet another test.

It would be an interesting poll to see how many here only needed one doctor and one complete round of rule out tests before diagnosis.

We have a person here now who has a doctor struggling between MMN and ALS. We all hope it's MMN. But it's been two years now. His window for trials is closed if it turns out not to be MMN.

Off my soap box now. But, as a nurse, you could certainly advocate for overall change in the general knowledge on ALS being taught to new nurses and caregivers. Those areas are lacking.

.very sorry about your MIL. Are there others in her family with ALS?

Last edited by notme : 10-21-2012 at 03:55 PM Reason: Typos as usual..wow, no moderation!
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Old 10-21-2012, 09:19 PM #10 (permalink)
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Default Re: If you could improve one thing about ALS...

Notme, I feel like we have echoed EVERYTHING I have experienced. I was unable to take my MIL to her first PT appointment and come to find out, they had NO idea was ALS was and likely had her do many PT exercises that were detrimental to her! She had bulbar onset and her speech is almost completely gone so she can't even get through to them except to try to get them to read her print outs on ALS. I want to be able to take her to every appointment but my school schedule and commute just do NOT allow it.

There is definitely a lack of education in the healthcare field and I really would like to try and get some education going. I feel like the problem with rare diseases is that it's hard to get to funding to educate healthcare professionals. Sad, but true. I have also heard that if a PALS falls and their caregiver cannot get them up, you can call the fire dept, tell them it's a non-emergency, and they will come and help your PALS up but sometimes, if the firefighters are new, they aren't aware of all precautions needed to move a PALS. I am thinking of starting small and maybe trying to get a little education plan going to do a little talk to firefighters in the nearby areas just so that everyone has the same info and what not. I applaud them for their service, and it's not their fault they don't necessarily get trained, just hoping maybe I can help close this small gap and work from there.

We are near the Seattle area and I am pretty excited to hopefully be getting my MIL referred to an ALSA-approved ALS Specialty Clinic. It sounds amazing. They have your PALS come into one hospital, check into one room, on one day, and all the providers (All educated and trained to work with PALS) cycle through the rooms of 6 or 7 ALS patients. Neurologist, speech therapy, PT, social work, respiratory, whatever. Then at the end of the day the whole team conferences on the patients and figure out what needs to be improved. Sounds so great in theory, I hope it's as good as it sounds. We have been dealing with the VA and all the paperwork and approval stuff is a headache, although it looks like in the long run they will be very helpful!

I also echo the lack of caregiver services. The negative health effects on caregivers are undeniable and I find it atrocious that we do not give PALS and CALS more support. ACK! I am seeing so many areas that need help the more I look into it. It's quite discouraging :/

and yes, they are pretty sure that her mother and her maternal grandfather had ALS as well My question is, it's so hard to diagnose now, how certain can they be of it "back then?" (<--perhaps I am in the "bargaining stage" of denial....)
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Old 10-21-2012, 09:20 PM #11 (permalink)
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Default Re: If you could improve one thing about ALS...

Whoops, meant to say I feel like YOU** have echoed..."
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Old 11-05-2012, 10:48 AM #12 (permalink)
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Default Re: If you could improve one thing about ALS...

A cure but all I ask for at this point for my father is for him to be comfortable which never seems to be the case.
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Old 11-05-2012, 11:43 PM #13 (permalink)
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Default Re: If you could improve one thing about ALS...

Or how about a little compassion? Steve Gleason was taken from the MNF football game "unresponsive" in an ambulance tonight. Is ANYTHING even mentioned on the Post Game? NO
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Old 11-06-2012, 06:24 AM #14 (permalink)
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Default Re: If you could improve one thing about ALS...

At 0140 AM Michele reported that Steve was alert and "doing well"
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Old 11-06-2012, 02:01 PM #15 (permalink)
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Default Re: If you could improve one thing about ALS...

Kaylseyum; my husband (bulbar onset ALS) and I go to an ALS clinic and it IS everything you outlined. Studies show that PALS who attend these clinics are more likely to have a longer life. Every need is met as they arise. We attend quarterly. Everyone is so helpful, uplifting and matter-of-fact. They even advise on financial matters. Hope you get into one soon!
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