1st clinic visit

[nebrhahe53]

FVC=69. Peg tube suggested.
I've been taking Neudexta for a week and it has really improved my swallowing-too bad its not FDA approved for that-insurance wont pay for it.
Bulbar and left arm involvement so far. Tongue a little weak.
Was told to stay away from milk because of phlegm production, but where do I get the calories from?
PT suggested a cane or walker as my balance is not so good anymore.
They could not suggest any supplements to take and did not want to do any blood work.
Was hoping they'd do all that Mg/Zn stuff, but they did not want to do it.

 

[AfraidButNotAlone]

I use smoothies with peanut butter and instant breakfast mixed in

 

[GregK]

Use almond or soy milk instead of the cow milk. If you're going to mix something in, try the unsweetened type as the sweetened type is reeealy sweet.
For a calorie hit (and breakfast) i drop in a blender: one Boost protein drink, one scoop of protein powder, 2 Tbs peanut butter, 1/2 banana and a few ice cubes. I also toss in l-serine and acetyl l-carnatine, but that's a different story.

Definitely go with the cane and graduate to the walker when needed.
Falling is truly to be avoided, and just walking will be exhausting. Take whatever 'mobility' help that you can.

 

[Nikki J]

So agree with Greg about falls. Please be careful!
Too bad about Nuedexta. It is too late for you but for others who might be reading this it is helpful to develop a little emotional lability before getting a prescription and make sure it is documented in your record. Neil I know it is expensive try goodrx dot com and see if you can find a deal

 

[nebrhahe53]

12 dollars a pill! 700 dollars for a 30 day supply no way I can afford that. Even more expensive in Canada thats very unusual.

 

[lgelb]

There is an Avanir pt assistance program for those with no/limited coverage and they can try to help w/ insurance. 1-855-468-3339

 

[bigmark1954]

12 dollars a pill! 700 dollars for a 30 day supply no way I can afford that. Even more expensive in Canada thats very unusual.

check out Rite Aid for the "N" word. My Blue Cross will only cover a very small part of it for me because it is a name brand, there is no generic for it.
I pay 231.00 a month from RA.

 

[affected]

I will just say it again - avoid falling! You won't heal, and you will speed up progression.

Crap about the price of the neudexta. We can't even get it in Australia, so never got to try it out

Do try to make your decision regarding the peg now as they are suggesting. It's very much a personal choice to have it or not, but if you are going to have it, get it in early even if you aren't ready to use it.