[Lisa]

I have a recliner/lift chair, the manufacturer is Golden, I believe it’s the Maxicomfort model.  It has really helped me as I can still transfer myself to my wheelchair when the recliner is lifted just a few inches.  My lift chair has infinite positioning (which I highly suggest!) so it also allows me to get into comfortable positions and get the pressure off of any areas that maybe sore from sitting all of the time as well as getting my feet up when they are swollen.  I do wish the chair was a little more comfortable as far as cushioning goes but for the most part its my favorite place in the house!  I went to the local dealer and made sure the chair fit me before we purchased it so that it would be as comfortable as possible.

From a caregiver perspective it would be a back saver to be able to raise the person up before transferring to a chair.

[Lisa]

 

My husband who is pretty tech savvy has set me up with the apple Home app and a module on the garage door opener to allow me to open the garage door just using the app…not sure if it can be voice activated.  He also installed an electronic lock, I believe the brand is “August” on the front door deadbolt that I can unlock/lock using an app on my phone.  Those 2 things along with cameras allow me to see who is coming and unlock the front door or open the garage door without leaving my recliner or wheelchair.

[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 mouths at some point!  I have been an open book with people in my circle from the very beginning and have encouraged questions because it seems to cut the tension a little when they see that I am open about my diagnosis/prognosis, but thats just my way  of coping.  I do get a little offended when people I haven’t seen for years, who were never close friends, reach out on social media asking how I am. I don’t mind if they reach out to say they heard about my diagnosis and are thinking about/praying for me, but I feel like they are just fishing for info for gossip when they ask how I am.  Maybe I’m wrong for feeling that way??!!

[Lisa]

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 access my port twice during the cycle.  I am able to de-access myself.  The infusion is not covered under a prescription plan but under the medical side of someone’s insurance and the oral form will fall under one’s prescription drug plan, whether or not it will be covered is another story.  I am thinking it will not be a “formulary” drug which means it will at least be at a higher cost to us and I would think that it will be as available as Riluzole is from pharmacies.

A few of the benefits that I can see:

– the convenience of not having a nurse come twice a month will be great, although anyone with a port will still need accessed once/month to have their port flushed.

-not having a needle in my chest for 30% of my life is also great

-not being tethered to an IV pole for over an hour with each infusion

I am sure there are more reasons to switch!

 

[Lisa]

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 fortunate to be able to do that!  While my progression is slower than most, I would not have been able to keep up with the pace of the job for much longer anyway and my fatigue at the end of the day would have been terrible if I had to work all day.  I was 50 the year I was diagnosed and just called it “early retirement” when I resigned!

[Lisa]

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 Association has a list of ALS clinics, even if it’s hours away the trip would be worth it.  If it’s not feasible to visit an actual clinic, you can try to find a larger hospital system, even one possibly associated with a university.  They tend to have larger groups of neurologists with ones that specialize in specific areas, you want one who specializes in neuromuscular diseases (NMD).

When you visit, do exactly what you did in you note above.  Have your symptoms written down in sequence, and don’t leave ANYTHING out, whether you think it’s related or not.  Even the smallest detail can make a difference.   They also need to see the progression, that is very important with helping to diagnose or rule out ALS.  As you are probably aware, there is no specific test to diagnose, it’s a matter of looking at progression of symptoms and ruling everything else out.

Good luck!

[Lisa]

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 insurance coverage and that not all pALS have that option.  There must be some who decide not to take the meds solely because of the cost.

[Lisa]

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 causes the loss of balance. a light weight AFO may be in order. I resisted getting one, but when I finally gave in it made a big difference in my balance and energy consumption when walking/standing.

I was able to use a walking stick with my AFO for 18 months before I just recently moved on to a collator (wheeled walker). Again, I resisted moving to the collator longer than I should have and now I am glad I did!

I also have a power wheelchair on loan from the ALS Association’s Loan Closet. I have used that since I was first diagnosed for any trip when I know I will have a lot of walking. As Dustin stated, it helps with conserving those “energy dollars” and actually gives you more freedom than you realize!

[Lisa]

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 filling out and mailing forms for me. It works to their benefit to get you onto SS as soon as possible because it’s less money that the insurance company has to pay out to your husband. SS will fast track your husband’s case through because of his diagnosis and once he’s approved he will automatically be put onto medicare. His medicare effective start date will be back dated to the same date as the start date of his total disability. (I am only 51 yr old)

Another option for assisting with the process….most ALS clinics have contacts with a company that can also assist with the process.

If you have any other questions, I can try to answer, but I am not an expert by any means!

[Lisa]

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 $2,000 grant from the ALSA for certain modifications) The OT did an eval of our home and then sent an email with all of her recommendations.

One piece of advice I can give is to be realistic with yourself if given the opportunity to make modifications!  I have limb onset ALS, and while I can still ambulate short distances, I do know what the future holds, and I kept the future in mind with all of the changes: roll in shower, flooring that will hold up to a heavy wheelchair, wider doors and hallways, raised toilets, room for Hoyer lift…..

[Lisa]

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 can take that enjoyment away from me!  Honestly it’s still a fairly balanced diet but with all of the potato chips and ice cream that I want in between meals. That being said, I have noticed that my body does better if I make sure I get plenty of protein and also my body does poorly if I wait too long to eat.  My muscles feel completely drained if it’s been too long since a meal or snack and it takes a while (hours) to recover from that.

[Lisa]

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.

[Lisa]

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 that my foot wouldn’t pronate (turn in). My AFO was ordered for me after being evaluated by an orthotics specialist as Dagmar mentioned.

If you can afford the out of pocket expense for the AFO without turning it into your insurance, it may be worth it to do it since it may allow you to continue to do the things that you love. The carbon fiber AFO’s are much less restrictive than the plastic ones but do offer less support.

[Lisa]

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

[Lisa]

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 make up the rest to get him to that 60% mark.

I was on short term disability while I applied for Long term, short term kicked in after 1 week of vacation pay and lasted up to 6 months where I worked.  Hopefully your husband has that option.  The process for the LTD took longer, probably 4-6 weeks for me, but I was collecting short term disability while it was being processed. And just as Dustin said, my LTD benefit is taxed because my employer paid the premiums.