Carolyn Barry
Forum Replies Created
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Amanda, thank you and I thank Dagmar, for moderating these forums. They really have been a great help in so many ways!  Chuck, my heart goes out to you, reading all your daily struggles. I know I will be right where you are, and I often wonder where I’ll fall, as far as the pace of my progression. I’m quite limited physically already, though I was just diagnosed at the end of October.  I feel similarly to you Rita, in that I find it difficult to talk to family and friends who either ask me if I’m feeling better, or tell me they are praying for a miracle. I’m told if I just wake up with a good attitude and really try, things will go well. I want to once again, tell them what the reality of having ALS is all about, but it becomes just too difficult to go over the facts all over again. Though I hope I’ll have many years to live, I just don’t know, so I’ll try and take it one day at a time. I am so grateful for what each person posts on these wonderful forums!  You all play a part in keeping me going 🙂  Each of you are in my prayers.
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Kathy, I actually feel as you do. I would much rather attend an event or function in person. While most people I know, including my family, enjoy zoom, I’m just not comfortable participating. I was forced to have many of my doctors’ appointments done virtually and I just never liked them. I guess if I could just watch and listen to what other participants had to say, and not be on video myself, I’d eventually get used to it. This is all probably just due to my discomfort with it and my lack of expertise as far as technology goes. Plus I do like talking to people in person best
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Like you Kathy, I too have a significant memory of 2020 of being diagnosed with ALS, in October. I was quite relieved to get an answer for the symptoms I experienced beginning in February. Though ALS is not what I expected, I was very grateful to be home when I found this out. My 2 months being hospitalized and in rehab, gave me a wonderful appreciation of being back home and seeing my family again, as I wasn’t allowed even one visitor during that long period of time. I try to keep things in perspective, as best as I can, though I know I could always make better efforts towards looking for the good. I hope 2021 is a better year for everyone! I am thankful for each person on these forums, as we share a common bond. And thank you very much Dagmar and Amanda, for being such wonderful moderators! All you do is much appreciated and makes a huge difference in my life!
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I definitely plan on getting the vaccine. I just hope that us pALS and our caregivers can be given it relatively soon. I’m anxious to find out how and where we can get it, as I read that many different places will have it. I too feel it will be safe, because of what has been stated so far, from those having had the vaccine already.
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Kathy, I found the same thing for myself, when I told friends and family that I have ALS. What felt easier and more comfortable to do, was telling someone first I had ALS, then asking them if they knew much about the disease. I would say everyone said no, that they knew very little about it. As I then began to explain a bit, it was very obvious that they were quite grateful. At that point, most readily asked several questions, which I was more than happy to answer. Just being diagnosed in October, I’ve still had a few friends either ask me if I’m feeling better, or say they are praying for a miracle. While that is hard, as I certainly wish things were going to improve for me, I try to be appreciative of their caring and expression of thoughtfulness. Dagmar, it sounds like you’ve really gotten this all down pat, and what you explained was most helpful! For me, it’s definitely a work in progress!
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I want to thank everyone who has posted here, as I find it such a lifeline, to dealing with family and friends and their response, or lack of, to hearing I have ALS. Your words are such a comfort, like a big hug, and I know you all are helping me in a most special way. You walk in my shoes, and I feel that when I read what you experience with others. You “get it” because you all live it, as I do. My mom always had such a great way of dealing with those who said things that were a bit “off”, clearly showing their inability to understand. She would somehow be able to say, “They mean well.” And I know she didn’t just say the words, she meant it. She was always able to see the good, in everyone. I try to be like my mom, but I admit, it sure isn’t always easy!
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Kathy, I’m sorry to hear you have pain everyday. I too have pain everyday. It is mainly in my feet and my lower legs. Partially it is due to my AFO’s, which are made of carbon. It seems that the metal is really the cause of the increasing pain and swelling on the sides of my feet. I am seeing my podiatrist in a week, and I may have to consider the traditional type of AFO, that will be custom made. I have axonal sensorimotor polyneuropathy, and my neurologist said that my pain is due to that. She also said that ALS does not cause pain, but I have it because of the neuropathy. This sure doesn’t make sense, as I hear many pALS have pain everyday. I take Gabapentin for the pain, but it doesn’t seem to help at times.
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Thank you Dagmar for your posts about having a rollator. I was diagnosed in October, though my symptoms began last February. In April I bought a rollator and find it most helpful upstairs, where my bedroom and bathroom is. It’s a great help especially in the bathroom, when I am at the sink and need to sit down at times. I have a traditional metal walker for the main level where our kitchen and living area is and that’s worked fine. After reading what you said about your rollator and how much it helps you, I decided to order a second one, off of Amazon. What you wrote really made me think about the benefit of having one to keep in the car, for using outside of the house. It made sense what you described about how much easier it was to have it for the outdoors, as well as indoors, away from home. I had been taking my metal walker, and have found it increasingly more difficult to deal with uneven pavement, cracks in the sidewalk, or really any surface that isn’t smooth. It’s getting delivered tomorrow and I’m excited! My husband does all the lifting and packing things when we leave the house, as I can no longer drive, much less lift things, so having it always in the car will be a major help! And I only have you to thank!!
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John, I’m so sorry your journey to be diagnosed has been so difficult. Being that I just moved to PA from NJ, 2 years ago, I had initially thought I might be heading into NYC to one of the big hospitals there. My struggles began with a few falls starting last February, and gradual weakening in my legs, arms and feet. I had other symptoms, apparently unrelated to ALS, but I still was feeling worse, as time went on. I then was admitted to my local hospital in Doylestown, and even with 3 weeks there, and every possible test done, and evaluations by multiple specialists, no one had answers as to what was causing my symptoms. I was then transferred to Penn Hospital and spent 3 weeks there too……more neurologists, plus every specialist they could send to look at me, and no diagnosis. It was thought I might have Parkinsons, or another movement disorder, but that was ruled out. I was discharged to a Rehab in NJ, spent 3 weeks there, and was then sent home, still not knowing what was wrong. I had lots of therapy, and was 100% dependent on a walker, with a great deal of weakness mostly in my legs, and feet, peripheral neuropathy, and minor weakness in my arms. It was then suggested I see a Neuro-Muscular Neurologist. I knew Jefferson Hospital in Philly was known for their work in Neurology, so that was to be my 3rd hospital, in hopes of a diagnosis. Mayo Clinic was my next choice. I actually had a therapist, nurse, and a doctor say to me……”Don’t worry, you don’t have ALS, that would be the worst thing you could have!” Well, I was more than ready for figuring this out, and an excellent neurologist at Jefferson was the one who did my 3rd EMG, and said she was positive I had ALS. She spoke to her colleague, who is a Neurologist, specializing in ALS, and who heads up the Clinic there. I had my first appointment in November at the ALS clinic. This neurologist, as well as each person on the Team that I saw that day, felt certain that ALS was what had begun, last February. I can’t say enough good things about this Team, as when I left Jefferson that day, I felt I was in the best of hands. Sure, I’m not thrilled about what this all means, to have a disease with no cure, but at least I know what I have, and I can do all that is possible, to deal with my life struggles, each moment at a time. I’d recommend Jefferson to anyone. They are the most compassionate people I have ever seen. Good luck to you John, I sure hope you can find answers soon.
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Reading everyone’s thoughts here, and what you all feel and go through, is such a support to me, I can’t say thanks enough 🙂
I agree wholeheartedly with trying to have a positive outlook, maintaining a sense of humor, holding onto faith, as well as being grateful for those who love us and will be there for us, as time passes. I feel incredibly fortunate to have 10 siblings, all living in other states, yet each stays in closer touch by phone. They are my lifeline, as well as a few caring friends, and my ALS Team, who is wonderful. Of course I have days where the tears come, but it’s when I can’t hide the fact that I may not see my 3 grandchildren grow up, and I’ll not be a part of my children’s lives. My husband is strong, not one to worry, but he is already worn out. I feel so responsible for how he feels, and there is nothing I can do about that, other than let him know daily how appreciative I am. It helps me so much to read what each of you do, to stay positive and look for the bright side of things. I make it a point, to focus on the good, as there is so much good in my life. When I do that, keeping my thoughts on all that I have, I feel so happy and thankful. It’s not easy at times, but I’ll continue to try my best, and please know that each of you help me so very much! We truly are “all in this together”!
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I asked my neurologist at my clinic appointment last Friday, and she said while ALS patients are considered high risk, she had not yet heard as to when we’d be able to get the vaccine. I wonder too if each state will be able to determine their own process of distribution.
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While I was in Rehab in June, the physical therapist there fitted me with bilateral AFO’s, non-custom, made of carbon, for the peripheral neuropathy in both of my feet and legs. At first, they seemed to be comfortable, very lightweight, and gave me the stability I needed to be a bit safer, as I used my walker. I asked about taking them off to do my exercises, but was told by several of my doctors that I would be at great risk for falling. When I got home though, I tried walking without them, using the walker of course, and I then felt I was better able to use the muscles in my legs and feet. About 3 weeks ago, I started having pain on the outer edges of my feet, right where the metal from the brace make contact. Wearing them has become a challenge, even with trying to attach padding to the metal. I think I may need custom braces, yet I am not so sure insurance will pay for them. I’m hoping the PT at clinic tomorrow, who I will be seeing for the first time, will give me some advice! Has anyone else experienced anything similar? Thanks to everyone who has already posted about their orthoses.
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Curtis, it is interesting that you mentioned the ALS TDI, and their Precision Medicine Program. I was just given their information by my niece, who had found out about it. I’m guessing you’re happy with your participation in it, by what you said. It did sound worth checking into, and I had thought I’d ask my doctor what her knowledge of it is, when I go to clinic this Friday. Thanks for mentioning it!
Carolyn
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This is all such a great help Curtis, I really appreciate your details! Since I was just diagnosed in October, I am clueless on what to expect, and now I’m feeling a bit more prepared for Friday’s clinic. I too, don’t have swallowing or breathing problems yet,  but I did have one  choking episode. I’ve been okay since, so we’ll see what they say! One question ~ Is the injection done using an auto injector or is it a syringe that you’d see a nurse use? Thanks!
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Curtis, I really appreciate all you posted about participating in the Healey Trial. I wasn’t sure what to expect and my doctor had told me I was a good candidate for this trial,  when I asked her about a clinical trial I could take part in. All you described about the process of being eligible was so helpful and I have to admit, quite a bit more than I had expected. But saying that, it doesn’t change my mind at all, as to hoping to be accepted into the trial, after undergoing all of the tests. The clinical research coordinator contacted me, being that my first clinic appointment is this Friday, and she will meet with me to explain more. How long does the process take, for determining eligibility? Your firsthand account was incredibly helpful to me ~ thank you so much!
Carolyn
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I was diagnosed just in October, and started Riluzole a few days later. I take it an hour before I eat, twice and day, and haven’t as of yet, had any side effects. My exhaustion has been a constant in the past year, so I didn’t think it was related to the drug. Maybe it was due to the ALS, before they figured out a diagnosis for me. Thanks to everyone replying here, as it’s so helpful to hear what might happen, as I’m on it longer.  I also won’t feel I have to be as strict as to the timing of when I take it. Sometimes it’s way off, and I was thinking it might cause a problem. Guess I’ll just try, and see how I do.
Carolyn
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Dan, I’m sorry to hear you haven’t had any luck yet in getting onto a clinical trial. That must be so very frustrating for you. I read your reply to Amanda’s post and that was the reason I asked my neurologist, at my first appointment after being diagnosed. I was very fortunate in that she is heading a trial at Jefferson Hospital, which originates out of Mass General. She said I might be eligible, due to being newly diagnosed, and hopefully I find out whether I am or not, at my first clinic appointment next Friday. I really hope that somehow you are able to locate one that can take you on as a participant. Has your doctor done some research on this for you? I would hope so.
Carolyn
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Mary Ann,
I agree with what you said, that even with loving and supportive families and friends, being able to share with those who are going through the same thing, truly means everything. Being diagnosed in October, after 8 months of increasing symptoms, I still feel like this is beyond shocking, to be told I have it’s ALS. One of the hardest things I’ve been finding is that people, out of concern, and knowing my diagnosis, are often asking me if I’m getting better. I’ve also been told to just keep trying to do my best, and stay determined. While I’d like to think I have control over this disease, I know I don’t, and with no cure, I won’t be getting better. I am curious as to whether or not anyone else has encountered the same, with those who know little about ALS. I’m hearing others post the importance of keeping my spirits up, which is what’s in my control, and certainly makes good sense. It seems that others just assume, without asking me, that I’ll be back to my “usual”, like not needing my walker or AFO’s, in a matter of time. I appreciate others’ concern, and checking in on how I’m doing, but I find it challenging to be having to explain what having this disease really means, and why my symptoms will increase and not simply go away.  Thanks to everyone, who has shared what it’s like for you. You each play a part in helping me get through the tough moments especially. I will most likely be participating in a drug trial too, getting details next week.
Carolyn
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While in Rehab, 3 months ago, I was fitted with fixed metal orthotics. They go from the tip of my toes, up to my knees, for both legs. I was told they are the lightest, thinnest metal, possibly carbon. My doctor said they would be needed due to foot drop in both feet, as well as peripheral neuropathy. I also have muscle weakness, and was told that by wearing them I’d be less apt to fall again. Though I was told I should wear them all day, I decided to spend part of my day at home without them on. I think being able to move my ankles and feet has to be a good thing, plus it feels good. I just try to be extra careful when they’re off. I use a walker and still can only take a few steps on my own. I wanted to try using forearm crutches instead of the walker, but was told it wouldn’t be safe for me. I’d like to hear if others have had luck using these. Thanks to everyone for your posts, as they are so helpful!
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Thanks Kathy ~ All you said makes so much sense, and I think all of us who have this diagnosis, can get our strength from each other. I’ve always felt that sharing our burdens, and life struggles, is what can make the biggest difference. I think what’s hard for me now is not knowing what will happen next, as far as symptoms. I know that my life will continue to change, and not in the way I had thought, but with no cure, it’s going to happen. Reading what everyone posts lessens my anxiety over the unknown and how I’ll handle what’s to come. It’s so good to know we’re all in this together.
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Before I was diagnosed with ALS, I had a few times where my driving just wasn’t “right”. I would be making a right or left turn, thinking I was turning the steering wheel enough, to be fine. But then, I found myself making a wider turn than I should, or going a bit over the curb. I only thought it was one of those odd things, and not a big deal. I also noticed when I stepped on the brake, I’d end up closer to the car in front of me. I still thought I could still safely drive. Then, I had a day where I was driving to a doctor’s appointment, and had two near accidents on the way to the office. My less than ideal right turn, ended up with my car almost hitting the car sitting at the light. I wanted to pull over and stop right then, but thought I could drive the remaining 5 minutes to get there. As I approached a stop sign at a T intersection, I stepped on the brake, and even with my best effort, I couldn’t get my car to stop until I was in the middle of the highway, past the stop sign. I was in a panic and then pulled into the doctor’s parking lot, and that was my last time driving. I am so thankful that I didn’t hurt anyone. I should’ve “listened” to my increasing muscle weakness in my arms and legs. I will not drive again, due to leg braces, with no flexion at the ankles, peripheral neuropathy, foot drop in both feet, and significant muscle weakness in my arms and legs. My ALS diagnosis, came about a week ago. I really miss driving. I think everyone with ALS should drive as long as they feel they can. I am so happy for those that can!
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Thanks Kathy, for your thoughts. I really appreciate you sharing how it’s been for you. It’s so good to know I am not the only one who reacted the way I did, when I first was given this diagnosis. I can see already what a great comfort this forum is, and I just know it will be so good to read others’ posts. Certainly was a bright spot in my day, to find it!
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It’s less than a week, since I was diagnosed with ALS. I’ve had various symptoms for 5 months, and even after a lengthy hospitalization at 2 hospitals, as well as weeks in rehab, not one doctor had any clue as to what all of this was caused by. After a 3rd EMG by a neuro-muscular specialist at yet another hospital, I was told I had ALS. Maybe because I’m early on, as far as the some of the typical symptoms, I’m having this crazy thought that maybe it isn’t what they think. I wonder if anyone else has experienced that? While I am soon to begin my care with an entirely new neurologist, who heads an ALS team, I still have to fight off these feelings of denial, and not yet believing this is actually true. I know it sounds crazy, but I’m hoping others have felt like I do, at least initially, so I can hear how they coped. I do have significant muscle weakness all over, can’t walk more than a step or two without a walker, so I’m hoping I can soon see my situation as it really is. I know I sound like I am in total denial, but I can’t stop hoping they’ve got it wrong. I thought best to post it here, to find out if anyone else has reacted like I did, when first being given their ALS diagnosis. I’m so happy to have found this site, as I sure do need it!
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Thanks John, for sharing your thoughts. I have a regular walker, and actually didn’t even know what an upright walker was, till I did a search. It certainly is frustrating when an insurance denial is why we don’t have what we know we need. Interesting that you have your ALS appointment this week, as my first appointment with an ALS neurologist is tomorrow. I figure I might as well ask her thoughts on my ability to walk safely with forearm crutches, even though the neuromuscular physician thought it wouldn’t be safe for me. I’d welcome any suggestions that anyone has, for questions I should be asking at my appointment tomorrow! I hope yours this week goes well!