Wife diagnosed with bulbar ALS - some questions

[gigem]

Hello all.

My 52 year old wife was recently diagnosed with bulbar onset ALS. Initial diagnosis was by a neurologist Dr. Greg McLauchlin at Baylor, who then referred us to Dr. Harati at Baylor who confirmed the diagnosis a few weeks ago.

Obviously it's been a very rough few months for us. That goes without saying...

We haven't been too thrilled with the customer service at Baylor. Dr. Harati's "right hand woman" has been very slow to respond to phone calls and emails. They mostly just made the diagnosis and pushed us out the door. They seem overworked and understaffed at the new facility at Baylor.

We are small business owners and are insured with BCBS via Obamacare.

So here are some questions:

1. We investigated Methodist and Dr. Appel, since we are unhappy with Dr. Harati. We were told that they don't accept any insurance from the exchange. $14,000 out of pocket for first visits, plus we need a referral from someone. Seems like it will take months and mega dollars. Does anyone have an ALS doctor that they are happy with in Houston that takes Obamacare insurance? Or does it really not matter, and just stay with Harati?

2. My wife is very functional at this point. Just some slurred speech. We are wanting to take a "last vacation" soon with our kids, but it will interfere with our first scheduled clinic next month. Are these clinics really worth the effort, early on? I can see them making sense when she is further progressed, and needs to consider feeding and breathing assistance. But we are nowhere near that point yet. Should we just postpone the clinic?

Thanks in advance.

 

[Nikki J]

Sorry to welcome you.
I can't speak to your first question. Except to say if she has work credits after the 5 month wait she should get ssdi and medicare.

In general most find the clinics more helpful initially through getting equipment then not so much sometimes. Your current issues as bulbar onset are probably voice banking - if desired urgent start right away ( clinic not needed to do). Starting nuedexta if not already on it and then communication methods ,swallowing / feeding tube and breathing assessment. If her swallowing is good and her breathing too I personally would reschedule clinic and take the vacation

 

[lgelb]

Very sorry to welcome you here. I grew up in Houston and worked at the Med Center. Is your plan a PPO, HMO, what? It is not whether you bought on the Exchange as much as the plan design. But as Nikki points out, if she has work credits, you can file for SSDI/Medicare and that may bring Methodist back into the picture.

Much of what you need can be obtained from a good internist or outside neurologist. The major value of the clinic, though opinions here will vary, is writing orders for equipment but those can be written elsewhere. Many of us stopped going to clinic at some point, often after the power wheelchair order (though that, too, can be obtained outside an ALS clinic).

I would not spend mega dollars to go to Methodist, but would instead spend that precious time finding a great internist, who can refer to a great neurologist (and in Houston, you should be able to find both). But I wouldn't worry about that now. Plan/take the vacation and postpone the clinic till you need it (while being aware that the lead time is considerable, so you could hedge your bets with a Fall appointment against finding other resources when you get back).

The local ALSA and/or MDA chapter may also be a resource for you, and there are frequently support group meetings in large cities, and virtual chat/meetings as well.

Best,
Laurie

 

[swalker]

Sorry to welcome you here.

I agree with Nikki. Start voice banking immediately if you want to have her voice produced by an electronic device in the future. Check out ModelTalker. You can do this on your own at virtually no cost (I spent about $50 on a Sennheiser PC8 headset so the voice recording quality would be sufficient). Do a search and you will find more about ModelTalker.

There is no way I would put priority on going to clinic over going on a vacation. Do everything you can while you still can. Build memories. Enjoy life together. There will be opportunity for going to clinic later.

I don't go to a clinic. One is available to me. Instead, I have a carefully selected team of doctors and medical specialists that support me as needed.

I see a wonderful neurologist with whom I am quite pleased. But, really, what can he do for me. He simply tracks my progression.

It is the other medical professionals that really make a difference in my daily life. The wheelchair folks, the pulmonology clinic, the swallowing therapist, etc.

If your wife has stopped working, she will likely be covered by medicare pretty soon. That can open up many provider options for her.

Steve

 

[Jrzygrl]

I don't have any advice on the first, but definitely - take the vacation!!!! My husband has limb onset, and it is complicated to travel. Lots of equipment is needed for us at this point. He is in a power chair and we have a wheelchair van, but all "accessible" rooms are not equal. The same goes for handicapped restrooms. Nothing is done without LOTS of planning. Clinic will be there when you get back.

 

[soonerwife]

Sorry to hear about your wife's dx. My husband was also dx'd with Bulbar Onset ALS in Oct. '15. He started with slurred speech as well that started in July '14.

I would definitely take the vacation. The clinic will be there when you come back. We went to Hawaii last June for an early 20th Anniversary trip.

I wish I had some advice for you on the insurance but I don't. Sorry!

 

[gigem]

Thank you all for the responses so far. We are very excited about the ModelTalker thing. I now remember reading about this at some point in the past. I have signed her up, and I'm going to donate my voice too. I ordered the Sennheiser headset from Amazon, should be here Thursday. That will be a good project for us both. My wife is all about preserving the past, and having her voice captured like this is just too perfect for us. Thank you!!

 

[ntd19]

There are a number of apps that will use model talker once you get it completed. One recommendation an app called Predictable, it runs on iphone and ipad. My wife has been using it for 2 years now and it has worked well for us. She uses it on an ipad mini, easy for us to carry but better keyboard than iphone. We are now working on an eye gaze machine to get her up to speed before she completely loses her ability to move her hands.

Sorry I do not have any insurance info, I have been fortunate in that regard, mine is covering most things.

 

[ntd19]

On the Clinic issue, the PT and OT folks have been the most help and they need to have experience dealing with ALS patients. They have been the ones I have worked with to get powerchair, suction machine, cough assist machine and other items. A sleep doctor obtained the Trilogy for us. The doctors have been good to write necessary scripts. You will have to be persistent. I do agree that a good internist early on is key. Ours has reacted to sinus infections quickly and I am sure saved my wife's life a few times.

Take the vacation!!!!!!!!!!!!!!!!!

 

[Lkaibel]

Yes do take the vacation!

Assuming your wife goes on Medicare after the 5 month wait, let me say I am tickled with the many things Medicare does cover. Medicare with part A and B and the Medica supplemental ( anyone on Medicare can buy a supplemental from various sources) has been so great. Add that to the various do-dads we have received from the ALS society and it's been good.

I would not get super hung up on prestige clinics. We go to a Prestige clinic. The University of Minnesota and while we love Dr Walk, too many people around him have been too interesting... Dr Walk can't cure ALS anymore than any other Neuro, much as I like him.

Sorry to welcome you to our unfortunate group but you will find much support here.

 

[DaChief]

Sorry to welcome you here but glad you found us. Many good answers already on the clinic need so I won't rehash. What I will sound off on is the vacation. Go early, go often!!

 

[gigem]

Thanks again all! We just booked a vacation for early August.

 

[Angiegal]

Glad to hear that.
I would love to hear about your trip!

Angie

 

[Jocalyn8]

Sorry to welcome you here. This is a good place with good people. I am a 51 woman DX 10/15 with Bulbar onset. My words of advice, voice bank NOW, record videos for your kids/friends/spouse. TI have completely lost my voice this January and waited to long. Take that vacation NOW! Clinic can wait. Just to give you an idea of progression: I cant talk,take all meals by tube, I cannot drink even water,and am getting my power chair this month.. So seize the day!! We went to Napa tot the redwoods, a French river cruise,Christmas' in Punta Cana and St. Martin. Last month I went to Turks and Caicos, It was very difficult and I am sure I am done traveling.. Cheers, jocalyn

 

[pm2017]

Sorry to welcome you here.
My mom was recently diagnosed with Bulbar ALS as well.
We saw Dr Sheetal Shroff at the Methodist Hospital in Houston and I highly recommend her. It took us about 2-3 weeks to get an appointment with her.
My parents don't live in the United States so my mom does not have health insurance here. The hospital offers a 40% discount to patients paying out of pocket.
She also went through a ALS clinic appointment that included Pulmonologist Dr Vanessa Holland, who is amazing! My mom's main symptom right now is slurred speech as well due to weak chest/breathing muscles, so seeing a pulmonologist regularly is very important.
Hope this helps.
Best wishes to you and your wife. Hope you have a great vacation!