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TypingTerror

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My father-in-law was diagnosed with bulbar ALS almost 2 weeks ago. We have an appointment Monday afternoon that is basically a conference with the family to go over any questions we may have. Truthfully, we have no idea what to ask. After his EMG the day of his diagnosis, the neurologist told him and myself to expect a significant decline in 6-12 months based on his current condition. He already has a feeding tube, so that's covered. About the only thing we have come up with so far is about continuing his medication for cholesterol with the current timeframe we have. He is already getting started on disability and will have Medicare once that becomes official. Any suggestions for other questions? Thanks :)

Marisa
 

nspoc

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Hi Marisa -

Are you seeing a neurologist, or is your appointment with a full scale ALS clinic?

If it is the entire clinic, and you are expecting as rapid a decline as you have indicated - I would ask for a pulmonology referral to get ready for bipap.

I would also ask for referrals for Occupational Therapy for help in transfering and other Activities of Daily Living (ADLs). Also ask for a home evaluation so that you can get good advice on how to adapt his home, now and for the future.

It is never too early to get measured for your wheelchair - get a referral to a qualified wheelchair outfitter - do not just pick a chair. Getting started is important because it takes MANY months for delivery. More about that later if you are interested - just ask.

Also - ask about a social worker to help you with getting a Power of Attorney for Health Care and an Advanced Directive in place. It is never to early for the Power of Attorney - it will be there just in case you need it. A social worker should be VERY familiar with both of these and able to help you.

If he has bulbar onset - get a referral for a speech pathologist and get started on finding equipment to help with communication -everything from charts you point to, to sophisticated eye-gaze recognition software that generates speech. There is a baffling array of stuff out there and you will likely want help to sort through what is best for you.

You do not need to do this all in the same week - but you do need to get the referral process started.

If you are not at an ALS clinic - get a referral to one in your area at the meeting on Monday - do not go away without that referral. An ALS center is your single best place for help.

You also want to sign up right away for the MDA (Muscular Dystrophy Association) as they will then automatically send you 2 EXTREMELY informative publications which contain all kinds of helpful resources. The MDA also has equipment pools for lending you things for free, grants to be used toward wheelchairs, and separate speech equipment grants. This can often be done at the appointment you are talking about.

Hope this has helped. I am sure our fellow forum members have much better info than I do. I happen to be fairly concrete - and this is the stuff we needed to know, and which proved most helpful.

Best of luck - Beth
 

TypingTerror

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Thank you so much Beth. This is his regular neurologist, and mainly he is just doing this as a way to ask any questions we may have. This is definitely the type of information I was looking for. We live outside Tampa, and I think the closest ALS clinic is in St. Petersburg, so we will definitely look into that.

Marisa
 

nspoc

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Hi again, Marisa -

Glad that was somewhat helpful. Please post again and let us know how the appointment went. I also forgot to tell you that ALSA is a good resource. Check that out on the Web.

Good luck - Beth
 

liz

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Hi Marisa -

You may also want to inquire about a referral to the MDA. They have an ALS division and it is my understanding that they can provide assistance with some of the more expensive medical equipment. I've received a lot of useful literature from them. If your neurologist doesn't know how to do this, ask about it when you get to the ALS clinic. Or maybe you can call the MDA directly for more information.

Liz
 

TypingTerror

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We had the visit with my father-in-law's neurologist yesterday, and he showed us some of what led him to the ALS diagnosed. Mainly, his tongue has severe fascs and is very weak. He also has less noticeable but still present fascs in his arms, legs, and upper shoulder/chest areas and general muscle loss in his arms and legs. The neuro said his EMG/NCS went crazy when he put the needle on FIL's tongue. Lyme and other blood work all came back negative.

As far as the MDA, I asked about it, but he didn't know about giving me a referral or even a referral to the ALS clinic. He evidently has had several patients with ALS, though I didn't ask how many, and he said he would be available throughout his continued care, involving respiratory when needed.
 

liz

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Hi Marisa -

Wow, that's too bad that your neuro won't make referrals for specialized care. Has your FIL even been referred out for a second opinion? Looks like it will be up to your family to access care and resources. You can google the ALSA to find the ALS center nearest to you. Good luck.

Liz
 

TypingTerror

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Liz, right now we are waiting on his Medicare coverage to do any more appointments, at least routine ones. Today is his last day of FMLA, and the final day of his employment is also the final day of his insurance coverage. The social security disability process has been going on for a couple of months now, and when I spoke to them last, they were just waiting on info from the neurologist to make it official. I did get signed up with the MDA through their website, and they have enrolled FIL and are mailing us some information. The closest ALS center is in St. Petersburg, about an hour or so away from here. I have them on my to-do list, which is unsurprisingly getting longer and longer lol :) Between FIL's care, my son's broken arm (one more week in the cast!) and my daughter's ADHD issues, I've got a full plate right now.
 

liz

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Marisa -

I hope your in-laws appreciate all you're doing for them but they might not realize 'til later how the steps your taking now will help them down the road. I know what you mean about kids and the "to-do" list. No matter how much you do, that list never seems to get shorter. :) Take care.

Liz
 
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