Lisa

I tend to extend a lot of grace to MOST people with their questions/comments and do not get offended easily, especially with close family and friends, IF we are having a face to face conversation.  Let’s face it, it can cause some major discomfort for some when they are staring at a person with a terminal illness and we’ve all pt our foot in our…[Read more]

Hi Sandra!  I had  Thuasne carbon fiber AFO, and if you’re still pretty active I think you would really like it.  It is incredibly light, only weighing a few ounces, and when you walk it spring loads which adds little “launch” to your step that simulates a more normal stride that you had before the foot drop. Mine also helped stabilize my ankle so…[Read more]

I have been doing the infusion at home for about 18 months, I can’t wait for the oral form!!  I have no idea if the medication is doing anything for me but I don’t seem to have any side effects and most of the cost is covered by my insurance so I figure why not do it.   I currently administer the infusion to myself but have a nurse visit just to a…[Read more]

Dagmar,

I initially took a leave of absence when I was diagnosed in 2020 with the thought of going back to work.  I was a nurse case manager over the phone and I worked from home.  While on leave, my husband and I made the decision that we would be financially OK if I took the option of Long Term Disability that my company offered.  I was so fo…[Read more]

Mike, I will second what Trevor has said.  Keep looking.  Do not settle for seeing a neurologist that has admitted to never seeing an ALS patient.  I really question a neurologist who says that, because while rare, ALS is not THAT rare!

You must be your own advocate right now and do some research in finding a qualified doctor.  The ALS Ass…[Read more]

I take a generic Riluzole and fortunately have “only” a $75-100 monthly copay.

I also get Radicava infusions at home, which are not covered by my primary insurance which is Medicare, but my secondary insurance through my husband’s employer covers at 100% after my $1500 annual deductible.

I do realize how fortunate I am to have such great…[Read more]

Gunnar, the carbon fiber AFOs weigh literally ounces! Even someone as sensitive to weight as an ALS patient can barely notice the addition.

Kathy, my ALS started to affect my balance before anything else. My PT suggested trying a walking stick/trekking pole instead of a cane to start. It helped tremendously with my balance and I liked that it wasn’t a “cane”! I just ordered a set from Amazon. Also, be sure your neurologist has evaluated you for foot drop, that is usually what…[Read more]

Sorry That I am just getting back to you Sonsu.  I think Dustin probably answered your questions, but I’ll throw in my 2 cents.  Just as Dustin said, if your husbands LTD policy pays states that they pay 60%, The carrier will pay the full 60% until his SS is approved. At that point, he will receive whatever his SS payment is, then the LTD will m…[Read more]

Sonsa, I had the option of Long Term Disability through my employer as well and took it. The insurance carrier for my LTD plan actually hires a company to assist their disability members with applying for SS Disability, maybe your husbands LTD insurance carrier will do the same. When I say assist, they walked me through the whole process, even…[Read more]

My husband and I just completed a large remodel of our home that now allows me to have single level living.  The ALS Association was a tremendous resource prior to the renovation. The local chapter was able to send an occupational therapist for a home visit, free of charge,  in order to advise us before we started. (I was also approved for a $…[Read more]

I have been very “lucky” up to this point that I do not have any bulbar symptoms and my swallowing has not been affected….yet. I have not suffered any weight loss and have in fact gained weight since my diagnosis just over a year ago.  So I eat whatever I want…whenever I want.  It’s my way of sticking it to this dreadful disease before it c…[Read more]

I have the same as Susan….the newer Apple Watches have fall detection.  I have the one that has to stay within bluetooth range of my cell phone.  There is a more expensive model that is basically it’s own cell phone.  It’s given my husband peace of mind since I can still walk short distances and am home alone throughout the day.