carolyn-barry
Forum Replies Created
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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.
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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, knowing I have ALS, which most people know very little about. Thankfully they do take it well, and I end up feeling so relieved and clearly better physically, since I haven’t put myself in a situation where I end up feeling exhausted and depleted of my energy. It’s hard to accept and realize that it’s not a matter of being selfish, but rather it is self-preservation for my health, and nothing more than that. I hope your times with friends and family can go smooth, especially as you are dealing with issues surrounding meals. Thank goodness we all have each other on these forums to share and understand. It is a lifesaver!
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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 understanding and quickly go with what the timeframe is that I tell them. It then is an enjoyable time together, since it is within what I can tolerate and not feel overstressed or overtired.
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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 and extended up to my knee. Though it took longer than I would’ve liked, I then was examined by an orthotics specialist, who determined I would be best fitted with a custom carbon fiber AFO. These are what I’ve been wearing since, and I’m happy with them. The fact they are extremely light, make all the difference in my ability to still be able to walk and lift my feet. My neurologist and PT feel that if I had a heavier AFO I would no longer be able to walk safely and tripping would be a constant risk. Dagmar I would’ve loved to purchase the same shoes that you sent the link to, but unfortunately the largest size they sell is a 10 and I wear an 11 🙁 I was so disappointed, as they look so nice! Sandra, good luck to you in getting your new AFO’s!
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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 covered 100% by Medicare and my Supplemental insurance, which then falls under my medical coverage. I quickly found out that the oral Radacava would be covered under my Medicare Part D insurance, which is my Rx coverage, as opposed to the medical coverage. I knew that it would be filled by a Specialty Pharmacy, and I then filled out the necessary 5 page form for JourneyMate. They are the company that investigates a person’s insurance coverage, in order to determine if it will be covered, and if so, what the out of pocket cost will be. My neurologist had to fill out their portion and submit the form. A decision was to be made in a few days, and it came back pretty quickly. I was told that this is not a Formulary Drug and it would not be covered at all. Again, this falls under Part D, which is completely different than being under the medical coverage. The fact that it must cost significantly less is not at all a factor, as it is two different policies that determine coverage. I was quite disappointed, but I’m actually not surprised. My neurologist said she would reach out to the drug manufacturer to see if there are any other options. I’ll stay with my infusions, which are incredibly time consuming and exhausting, since they aren’t done at home, due to insurance only covering the cost if it’s done at a clinic. The staff there are very kind and compassionate, so I am most grateful for their care.
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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 and by far, I like this one the best.
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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 I finally got the answer to all of my previous uncertain test results. I wish you the very best and that you are able to seek out a specialist you are comfortable with and whom you can trust.
Doug, your last post was incredible. I really appreciate all you said, and I do feel as you do, on all that you said. I also rely on my team at clinic. They are quite a stronghold for me and have been a wonderful support and a comfort. You have a gift of expression and your thoughts will help anyone who reads them. I even printed out your post so I’d have it to read again, when I most need a boost to my spirits 🙂 Thank you for taking the time to write this for all of us.
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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.
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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.
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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.
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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 thoughts on hospice care too, as well as your personal experience working with Palliative Care. I think your last comment really said it so well ~ “It’s not even quitting care. It is choosing different care.” My mom was in hospice and cared for with palliative care, I could see how each person tended to her needs in such a kind and empathetic way. They were angels ~ she truly felt comforted.
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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 possible I could be given an extension, but if I can’t, I could go through the screening process again and randomly be assigned to another regimen. Since I have remained slow progressing and stable in some areas, I would most definitely reapply to the platform.
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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?
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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 Riluzole and Radacava, there is no way of knowing which of these drugs, or all of them, are contributing to the fact that I’ve basically been stable for the past 6+ months. The time commitment for this trial hasn’t been too hard to manage. I have to go for an in-person visit either every month or ever 2 months. When I don’t have to go in, the Research coordinator calls me and asks a number of questions as to how I’m doing. It has been fine and I feel that if it can even help me a little bit, it’s worth the effort and time involved.
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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.
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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 walk without them at night, and I almost feel ‘wobbly’ which makes me feel much more vulnerable to falling. My AFO’s are made of carbon, so they are incredibly lightweight. I recently had custom orthotics made, upon the advice of my PT. That positions my foot in the best way possible, inside the brace. My AFO’s go from the bottom of my foot to right below my knee. I wouldn’t do without at this point.
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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 it much easier than the traditional type of walker that I had been using. I don’t actually mind the wintertime either, as I love the fact it brings Thanksgiving and Christmas…..my favorite days of the year!
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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 with. 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 experience with, would be much appreciated.
Thanks! Carolyn
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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 granddaughter, or how I can’t play baseball with my grandsons like I used to. But what I can do is watch them play, see the joy on their faces, and hear their laughter. This is what brings me great happiness. Sometimes I do feel sad for not having the ability to do the things I used to with them, but then I try my best to stop that way of thinking and focus on what I do have. I have a sister who sadly has had two of her children not survive an illness. She lives by what she has often said to me….”Just look for the good!” I’d say that certainly if she can, with her great heartache, I can certainly try to do the same. You said just what she says, “life is good, you just have to look for it!” You are an inspiring man, I will think of you as I face each day 🙂
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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.
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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 the ALS field take a look at me. Though I’d still be anxious about what they would say after evaluating me, I would feel better that I tried every option of figuring out what was wrong with me. Just go with your instinct and you’ll make your very best decision and it will be the right one.
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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 didn’t make any sense. I felt more tired than usual and overall I just didn’t feel as strong. I then noticed when I was driving and turning the wheel to pull into a place, I wasn’t turning the wheel as well and I started to hit a curb. It was like my arms weren’t as strong. Then I really had a scare, as I stepped on the brake, as I approached a red light, and almost couldn’t stop in time. I knew I was hitting the brake as hard as I could, but that “close call” never happened before. I knew something was really wrong. In total, I had 3 EMG’s. What is very strange is that my first two, done at the same hospital, only tested my legs and feet. My results showed neuropathy in both feet, plus weakness in both legs. My doctor didn’t think anything of these results and had no answers, as to what the cause of this was. I then was evaluated at Penn Hospital by the Movement Disorders Clinic. They looked at my EMG’s, plus MRI’s and said while I didn’t have a movement disorder, they thought what I needed was to see a Neuro-Muscular neurologist. They had no idea what my diagnosis was. I decided to go to Jefferson Hospital in Philly, as they are known to be excellent in neurology. That was definitely the best thing I could’ve done. The neuro-muscular specialist decided I needed another EMG, which she herself would do. That EMG tested all parts of my body, right up to my neck, and it lasted over 2 hours, much longer than the previous ones, which were less than 1/2 hour. She finished and said she was pretty sure she knew my diagnosis, but wanted to consult with her colleague first. She said she’d call me the very next morning, which she did. Even though it was a Saturday, she called and said she was positive that I had ALS. She was very compassionate and kind as she told me, which meant everything. I continue to have neuropathy, significant weakness in both my legs, trunk and upper body. I use a walker full time, and a wheelchair for distances. I wear leg braces and am waiting for custom orthotics to enable more stability and proper foot positioning, for when I walk. I am considered a high risk for falls, but I just try to think before I move and take everything slow, so as not to lose my balance. I also have weakness in my arms and trunk.
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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 now, being that I am dependent on someone doing them for me, it seems that often it’s done in the way that they would like, which is usually opposite of my way. Of course there’s no right or wrong here, it’s simply my feeling that I can’t lose another part of myself. And to be told it “has” to be done this way or that, when I disagree, causes me to feel like it’s just another loss, in light of incredible and increasing losses in my life. I am still me, the same person inside, and that will never change.