Seeing ALS Doctor 1st time After Diagnosis

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lifeisprecious

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Hello, friends. My 73 year old Dad was diagnosed with bulbar ALS in July. He's been slurring since December. His speech has gotten bad, but no signs anywhere else. He is seeing the ALS doctor for the first time since his diagnosis next week.

What questions do you recommend we ask or services should we request?

Thank you. Every time one of you presses send, you help me get through this.
 

BrianD

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Is this with an ALS clinic, or just a stand-alone neurologist?
 

lifeisprecious

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Thanks for the response. We have one with a multi-disciplinary clinic, and another with a neurologist who specializes in ALS. The neurologist I believe is going to perform another round of EMG testing, and the clinic will give us time with dieticians, psychologists, respiratory and physical therapist folks. It's the neurologist I am really wondering how to use best.
 

BrianD

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I'm very glad to hear you have access to a clinic. Isn't an ALS neurologist available with the clinic?

For the neurologist I would focus on a few things:
1) symptom relief - You mentioned bulbar, so salivation issues, etc. Anything you might need a prescription for.
2) PEG tube discussion - If, when, where, etc. Understand the referrals needed, and lead time required so you are not caught unprepared down the road.
3) clinical trials - What's available in your situation.

Hope this helps. Good luck with your additional testing!
 

lifeisprecious

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Thank you, Brian. This PEG issue is a very sensitive one, because I fear my Father will not act until he is compelled to do so. The fact he has not seen signs of the disease in other parts of his body in the 10 months since he started slurring has created, I fear, the idea that preparing for more difficult conditions is unnecessary. Thanks again.
 

bowser

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Thank you, Brian. This PEG issue is a very sensitive one, because I fear my Father will not act until he is compelled to do so. The fact he has not seen signs of the disease in other parts of his body in the 10 months since he started slurring has created, I fear, the idea that preparing for more difficult conditions is unnecessary. Thanks again.



(side note) Yes, a peg is a personal decision but just make sure .....if......your father may want a peg, by the time it is an absolute necessity is usually the time he is no longer a viable candidate for the procedure.

Waiting til the last minute is NOT an option in many cases.

Now before posters jump on me and say ......."it is HIS decision", notice I singled out the word...."if"
 

BrianD

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Understand about the false sense of security. That's why good to bring it up now, even if under the guise of "way down the road". And I agree with the big IF he wants one.
 

lifeisprecious

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Thank you. Tomorrow is the appointment. I will let you know how it goes.
 

lifeisprecious

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Thanks to everyone's response. We asked the questions suggested. Apparently, no signs of ALS anywhere but the throat still. We hope it stays that way for as long as possible. It's funny how resilient people are. When my Dad first start slurring, we thought losing his voice might be the end of the world. Now, just losing his voice would be a miracle. Human beings are amazingly strong.
 

affected

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My husband is very similar.

At first the slurring so disturbed him, it was the worst thing he could imagine happening, then finally the diagnosis.

Now only 6 months later with breathing issues, swallowing issues, arms and hands very weak and hard to use and his legs going he says 'just' losing his speech would have been fine.

I do hope that your dad's progression is slow
 

Barbie

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Pegs are usually necessary sooner for bulbar pals... It really is necessary for bulbar. I hope the clinic encouraged it--he really can't wait until it is absolutely necessary because it could be too late. most who get them, do not find them a hinderance at all--most are very glad they got them.

Watch his weight and choking...if you see signs that it is changing then you need ot bring that peg up to him.
 

lifeisprecious

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Thanks Barbie. Apparently, the clinic was not too emphatic in recommending it. And I am not sure when it's appropriate. I mean, he has lost a few pounds and coughs while eating. But not too much impact yet in either area. Do you (or anyone else) have an idea about when pegs become a necessity? Problem is, besides his speech, everything else seems to be normal, so getting him to take that step without pointing to some concrete justifications may be tough. Thanks to you all and everyone.
 

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Most health professionals recommend getting the peg sooner than later.

That doesn't mean it is needed right now, but fluids are often difficult to swallow as they progress and so dehydration and constipation can become issues. Also losing too much body weight is a concern (see the newly diagnosed thread here for an interesting post today about this).

Also breathing is a consideration. They kept saying to my husband, we want to get the peg in whilst you are still fairly healthy, reasonable weight and your breathing is good.

I believe the whole thing would have been smoother and easier for him if he had gone for the peg a good 2 months before he did (he got it in last month) as he was more mobile, his speech was better and his breathing was better.

They can put the peg in and you don't even really have to use it, just have it there ready for when it is needed.

It's a personal decision they need to make, so probably just getting him all the information you can as you feel it is appropriate so he can make an informed decision.
 

texastracy

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I was just diagnosed in September and attended my first multi-disciplinary clinic on Nov. 1. It was a good decision we made to go there. The clinic staff are so knowledgable and willing to listen. On the drive home (5 &1/2 hours) we discussed what we had learned, made a list of questions and called back on Monday. All questions answered and an informed consent was able to be made.

Keep going to the clinic. It is so much easier than trudging around to 7 or 8 different appointments and dealing with all the different expenses and people. The clinic has all those people together with a clear and strong line of communication.

Continue to be strong both in faith and love.

Tracy
 

cervus

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I agree with what Brian said. If your dad is coughing whilst eating and has lost weight, a PEG would be recommended, IF that's his choice. That's a true indication that he needs one. Even just for meds at the moment. Good job of looking out for your dad! Yasmin.
 
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