What should we ask the neuro?

[Starfish]

My mother was diagnosed with ALS last month. We have a "family meeting" scheduled for Thursday with a neurologist who specializes in ALS - she has not seen him before, but he will have her records. I gather they will give us an overview and then we will be able to ask questions. Her current neurologist seems to think she is not really progressed enough at this time that this new one will really take her on as a patient. Any tips for what we should ask would be appreciated. I am overwhelmed, but want to do a good job.

Thanks,

Starfish

 

[andyvaughn]

Hi Starfish,
I am sorry to hear about your mother. This is really scary, I know... my husband was diagnosed 2/20/08. It feels like that was 80 lifetimes ago, hard to believe it is just over 90 days...
I don't know your specific circumstances, but I can't imagine an ALS neuro turning you down because your mother isn't "progressed" enough. The ALS centers focus on early intervention, in what they can intervene in, that is. If you are going to an ALS center, be prepared for an overwhelming amount of information and people seeing your mother. Generally, when we go, we see the doctor, a physical therapist, speech therapist, respiratory therapist, occupational therapist, social worker and the nurse.
You didn't mention if your mother is on rilutek and/or lithium, but those are two prescription meds being used in ALS right now.
The ALS centers are great about giving tons of information, almost too much. Take notes, make sure they are easily accessible to you, either by phone or email. Lots of things come up that I want answers to right away, it was important to me to know who to contact with questions, and how soon I could expect them to respond.
Also, I write my questions down as they come up, and ask the doctor about things, For instance, I didn't know what fasciulations meant, I had her explain what is happening in the body with that. I didn't know why my husband has excessive saliva and what to do about that. As questions arise, I either call the center if it is urgent, or jot it down for our next visit.
I hope your visit is a good one. I am wishing your mother and your family the best...
Andrea - wife of Pals Jim

 

[jrienecker]

There are usually Universities eager to do studies on the disease! When my father was diagnosed he went to Columbia Presbyterian Medical Center once a month for the first year or so of his diagnosis. A team of doctors would perform tests on him for about 4 hours, but imagine the impact on the big picture.... being able to help to find out what makes ALS occur!

When the disease progresses you want a team of doctors and caregivers that are going to really invest themselves in your mother. See if the doctor can recommend someone who will give home visits when your mother is homebound - start to plan ahead! Ask about when she can start some physical therapy.

Planning ahead means accepting that your mother is ill, but it will help TREMENDOUSLY for the future. Make plans for her living will, and other decisions she will have to make later on - feeding tube, etc. My father put it off until he could barely speak, and trying to discuss something as important as that is no good.

 

[fiddleplayer51]

Hello Starfish,
I'm so sorry about your mother's diagnosis. Just beginning to enter the world of ALS certainly turns our world upside down!
Is your consultation with the ALS neurologist for a second opinion? Will NCV and EMG be repeated? Try to get help interpreting the findings of NCV/EMG studies and ask whether the ALS is limb- or bulbar-onset. Ask where the deficits are being seen, on which side, etc.
After a preliminary diagnosis of bulbar-onset ALS in my husband by a neurologist here in Harrisonburg on March 28th, we went to UVA Neurology for a second opinion on April 14th. This was very helpful to us (if not also traumatic in having the preliminary diagnosis confirmed). We now are going to the Richard R. Dart ALS Clinic in Charlottesville where they are so very helpful. Join the local ALS Support Group. You will learn alot there. Here is how to get in touch with the one in Richmond:

Richmond ALS Resource Support Group
When: Second Tuesday of each month, 7:00PM to 9:00PM
Where: Trinity United Methodist Church, Mastin Room
903 Forest Avenue, Richmond, VA 23229
Contact: Sarah Stein, BSW, Patient Services Coordinator
1-866-348-3257 or [email protected]

Ask the ALS neurologist on Thursday what you should be asking. You're entering a whole new strange world with a vocabulary all its own. It's hard to know what to ask since each PALS manifestation is different.
I wish you well on Thursday. We too go back to Charlottesville Thursday for consultation with an ALS pulmonologist, modified barium swallow, and PEG tube assessment. Like I said, it's a whole new world.
Take care. I'll be thinking of you and your family. Make sure to write down any questions that come to mind between now and Thursday's appointment. There's nothing worse than getting home and thinking "Oh darn it! I forgot to ask about...."
Good luck and keep us posted,
Jane