I would try it if it were affordable. I highly doubt that it would be, just like how oral Radacava turned out, once it was approved.  It is so wrong for these drug companies to not help ALS patients with the super high cost of their drugs.

Hi Doug, I appreciate your thoughts and it helps me to feel not so alone in these types of situations with friends and family.  I have always been the kind of person who likes to fully explain to others when I can’t do what they would like me to do, but I find that it’s best if I keep it to a few simple words.  Then it seems they do understand,… Read more

Though I enjoy visits from friends, I do get very tired simply by talking and sitting.  I find myself committing to visits when I know I have a specific reason to cut it short, such as days with doctors’ appointments, or my infusions.  I am totally unable to comfortably have a visit with open ended timing.  I do find that friends are very… Read more

I was originally fitted with standard carbon fiber AFO’s, ‘right off the shelf’ as they were described to me. Since I hadn’t even been diagnosed yet, and didn’t have a clue as to what I needed or wanted, I agreed. Within a few months I had significant sores on the sides of my feet from the part that was on the outer portion of my foot… Read more

Guy, I can relate to what you said, in that I too, have struggled with now needing to depend on someone who thinks differently than I do, and doesn’t see things in the way that I do. I admit I am a particular person, and have always had the “luxury” of doing things around the house, as well as things for me, in the way that I want to. But… Read more

I too have been on Radacava infusions for about 18 months.  I have had no side effects whatsoever, and had a port placed back in September.  I was very happy that the oral formulation of Radacava was approved by the FDA, though my anticipation of actually being able to switch to this was short lived.  I am very fortunate that my infusions are… Read more

I bought a rollator on Amazon and it makes my walking so much easier and safer. It is the Momentum Rollator, made by Medline. What I like most about it is that it is narrower than most other rollators, so it’s great going through doorways. It is lightweight, easy to fold, and rolls very easily over any type of surface. I’ve used 2 other ones… Read more

Will, I truly hope that you can soon find someone to help you with a diagnosis. For me, it took 3 hospitals, a 2 month inpatient stay, several neurologists and many tests and specialists. Finally, a neuromuscular specialist, while doing my 3rd EMG, and just a few minutes into the test, said she had a definite diagnosis for me. That was when… Read more

Amanda, my heart goes out to you with another great loss…..your cousin sounds like a very special person. You will be in my prayers.

I have not seen this movie, and I purposely avoid any movie which is about someone who has ALS.  I find it too difficult as it would give me a greater worry about my future, and what I might be like, as the disease progresses.

I’ve been on both for about a year. Fortunately I am not rapidly progressing and have been fairly stable. I was diagnosed a year ago and began both treatments pretty quickly.

I’ve been on Riluzole for a year now and I have had no side effects at any point. I hope you can begin to feel better soon.
Carolyn

Marianne, I really do appreciate you telling us about your care with hospice, as I had no idea that a person with ALS could receive that form of care.  This sounds very good, and just the kind of care that would be needed.  I really feel for you with all you are facing each day, and I will continue to pray for you.  Mark, it helps to hear your… Read more

Tom,

Possibly my regimen A drug, the Zilucoplan allows for a longer open label extension.  I actually asked about this at my recent research appointment and I was told I could be on it for 1 year, for the open label.  I wanted to know if after the year is over, whether or not I could extend that time.  The coordinator told me that it’s… Read more

Trevor,

Could you possibly explain what it is that your tests showed, to give you the diagnosis of an alternate form of ALS?  I’ve never heard of this and I’m interested as to how your doctor came to that conclusion.  How did you feel when you were given this diagnosis, which sounds quite different from ALS as we all know it?

I am soon to complete the 6 month Healey Platform Trial, and I’ll begin open label, the actual drug, in September.  I’ve been on Zilucoplan, which is an injection I give myself each morning.  My doctor thinks I might be on the drug itself and not a placebo, since my ALS has not been rapidly progressing. She did say that since I am also taking… Read more

I will also add that even though my legs and feet feel much stronger, when my AFO’s are on, I still am dependent on my rollator to walk safely.  I too have foot drop in both of my feet.

I was fitted with AFO’s last June, before I was diagnosed.  I’ve been wearing them since, and I will say that without them I would not nearly be as stable.  As my legs have gotten weaker, I find that having the AFO’s on makes me feel like my legs are as strong as ever.  Walking is much easier, and I feel much more capable all-around.  I do… Read more

I think having the windows open and feeling the warm air come in from outside definitely lightens my spirits.  I can’t manage walking outside by myself, so it helps me feel as if I am sort of outside!  Walking in the ice and snow with my AFO’s and my walker is certainly a bit of a challenge.  Once I got a rollator for leaving the house, I found… Read more

Has anyone  had experience with having a company install a stair glide in their home?   We have several turns and landings, as we live in a 3 level townhouse.  As a result it requires a custom stair glide, so we know it will be very expensive.  Any thoughts or experience, especially regarding the names of any companies that anyone has… Read more

Hi Amanda ~ I was wondering if I could post a topic asking if anyone has had experience with having a company install a stair glide in their home.  I have no idea what company is good, yet not overly expensive.  I’m not in need of it yet, but I know I should start getting estimates from several companies, before making a decision as to who to go… Read more

Len, I really like your outlook and wonderful perspective!  You have clearly shown how we all have the ability to deal with our ALS and all the limitations it brings to our lives, and turn it into a positive.  Your thoughts and how you feel joy with your grandchildren despite your speech difficulties reminds me of how I can no longer pick up my… Read more

I was told the same thing, so home infusion was not a possibility for me.  Though I also was approved for a grant, it did not nearly cover the costs.  Medicare pays a large portion of my costs at an Infusion clinic.

Thanks for your prayers Russell, they mean everything.  I don’t have twitches anywhere yet.  I have mostly felt weakness and imbalance in several areas.  Honestly, if it were me in your shoes, I would go to the ALS clinic if they agreed to see me.  I think I’d see it as it can’t hurt, and it would be a way of having those who are experts in… Read more

I started with a fall, where my legs just buckled.  It wasn’t like I lost my balance or tripped.  My legs just gave out.  I then noticed my gait wasn’t quite right, and as I was walking into a store, I just felt I wasn’t walking as I usually did.  I was always a very active person, rarely sitting down, always up and doing something, so this… Read more

Russell, I think what’s most important here is that only you, the person feeling all of these things, can truly know that something is off.  I know that others have our best interest at heart, and are only trying to help, but what you feel is real.  I think it’s possible to have all of these issues going on at once.  We all know our bodies so… Read more

Russell, my heart goes out to you with what you are feeling and going through.  The time of waiting, seeing the changes in our body, going for tests and exams, hoping and praying for answers, answering everyone’s questions, just takes an enormous toll.  We share a birthday month, as I turned 66 on May 2nd.  I don’t even like thinking back to my… Read more

Thank you Amanda for sharing all you did.  My heart goes out to you, and I am so grateful for you.  You have given endlessly of yourself for all of us members on these forums.  You’ll continue to be in my prayers.

I’ve been on the Healey Platform Trial for close to a month, randomized to Regimen A, Zilucoplan. It’s a daily injection, which I find challenging, but I’m getting used to it. I’m grateful for being accepted, and haven’t had any change in my function, plus no side effects.  I did opt to have the first of two spinal taps. For no obvious reason,… Read more

John, I liked what you do, wearing the dog tag with medical information on it. So I decided to take a look on Amazon, and ordered one. I was surprised at how many details I could have engraved in it, and I know it’ll be great to wear. Thanks for telling us what works for you, as I hadn’t thought of this before.

I started Radacava infusions at a clinic, at the end of December 2020.  My difficulty walking and with balance, which has existed since February 2020, has worsened some, but not a great amount.  I still feel extremely tired everyday, no matter how much sleep I get at night.  This does seem to be worse as time has passed.  It’s impossible to… Read more

I also meant to add that my balance and weakness in my legs seems to be a bit worse, though it could be due to problems with my left foot.  I don’t know where the cause of this is, as again, there are several factors involved.

Peter, this sounds somewhat similar to what I have been experiencing with my Radacava infusions.  I started them in December, and I’m feeling much more tired than ever before.  I can’t say that it is only during the 10 days of my treatment, as it’s how I feel all the time now.  I talked to the doctor at the clinic I go to for my infusions, and… Read more

I was talking to my nurse at the Infusion Clinic yesterday, as I was getting my Radacava, and she had a very interesting thing to say.  We were talking about ALS and how it affects a person’s life.  We were talking about taking things one day at a time and how a positive attitude can only help, it would never hurt to have the best focus we… Read more

I’ve been taking 400mg of Gabapentin since October.  My neurologist prescribed it specifically for the pain in my feet, which is not only caused by my ALS but the peripheral neuropathy in my feet is also a factor.  The pains had gotten severe enough to wake me up several times during the night.  I haven’t had any side effects whatsoever from… Read more

I received my vaccine in February, under the 1A group, as I am 65 and my neurologist wrote a letter stating my ALS diagnosis and being someone at high risk for Covid.  I live in Warrington, PA and I decided to call the health department for my county, to explain my husband as being my caregiver, and hoping he could be vaccinated under 1A also. … Read more

I just saw my dermatologist and when she looked at my feet, with purple areas and ongoing coldness, she said I have Raynaud’s syndrome in my feet, as I do in my hands.  She said it is all due to the poor circulation in my feet, in addition to the neuropathy.  Thanks Kristine for mentioning the fact that compression boots help you, as I actually… Read more

Thanks for sharing what works for you.  My feet are very cold most of the time, and are purplish in color often too.  I don’t have swelling very much luckily.  I also try to move them when I can, but I tried compression socks and had to give up wearing them.  I had too much trouble getting them on my feet, due to my poor leg and arm… Read more

Thanks David, your words are very kind 🙂

Thanks Amanda, that would be great!

I do agree with you Nancy.  I am so grateful to have found this community to share with.  It has helped me a great deal, and in ways that I haven’t found elsewhere.  Your post was so inspiring, and absolutely wonderful to read!

Carolyn

Nancy, my heart goes out to you, being a caregiver for so many years for your husband.  You are a caring, dedicated person, and I can’t imagine how difficult it must be to continue taking care of what he needs, while you have your own difficulties now.  My life as a caregiver hasn’t nearly been as challenging as yours.  For over 30+ years, I… Read more

I tend to look for articles that deal with day to day practical needs that are due to having ALS. Reading about what others find helps them, keeps me focusing on a positive mindset.

I got a call from my primary doctor yesterday, that they scheduled my 1st and 2nd vaccine for me. Our local hospital here in PA had all if their physicians schedule their patients’ vaccines, as they are given a supply each week. I go February 4th and March 4th.

Thanks for asking Kathy.  I’m really hoping I’ll be able to get it in February, but I have no idea where things are really at with the supply coming in.  My local hospital, who I registered with, is now turning over the appointment – giving, to the Primary Care doctors, who are connected to their hospital.  I talked to my doctor’s office and… Read more

Yesterday, in just a few hours time, my home state of Pennsylvania, put those with high risk health conditions from Group 1C, to 1B and then to 1A.  Though I was happy to hear this, unfortunately the quantity of available vaccines doesn’t even come close to meeting the number of people who are now in 1A.  I expect to continue to wait a good bit… Read more