Carolyn Barry
Forum Replies Created
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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 well. I had most of the symptoms that you have, as I waited for answers, but I was fortunate to not have the bulbar struggles. I expect that is coming at some point, and I actually am constantly thinking it will start at any moment. How could we not be stressed as all this is happening? I think it’s pretty impossible for you not to be stressed, as it’s been going on for a long time and you are really doing all that you can to get it figured out. I even dream about myself as I am now. I think it shows that even our unconscious self feels the reality that we experience when we are awake. Very often I realize that my only option is to pray that I will be able to handle each moment in the best way possible. I know it sounds strange but I believe this is all meant to happen at this point in my life. I accept it but I wish it weren’t this way. It would be more concerning if you dealt with your worries by not talking about it. You need to say just how you feel, to those who are willing to listen and of course those who truly understand, because they are in your shoes. You are in my prayers and will continue to be.
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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 birthday one year ago, as it was only a few days before I was taken to the hospital for another fall. I spent 2 months in the hospital and rehab, all with no diagnosis. What I was told, leading up to my diagnosis of ALS, from several in the medical field was this….”Don’t worry, you don’t have ALS. That would be the worst thing you could be told you have.” So when I was finally diagnosed at the end of October, I was shocked, yet I was relieved to finally know what was causing all of my difficulties for over 10 months. When I read how anxious and afraid you are, I really feel for you. I went through many ups and downs, and I found it really challenging to stay optimistic and not let my worries take over. Give yourself a break and don’t feel bad about how saying how overwhelming and scary this time is. I think it’s normal and to be expected. You are doing the very best that you can, to handle a very tough and incredibly long period of wondering and waiting for an answer. We know our bodies aren’t “right” but no one can pin it down to exactly why. I spent months saying that my walking didn’t feel right and even though others would tell me I was walking fine, I knew I wasn’t. That led to a few falls and increasing weakness. I too have spinal stenosis and in the past had a spinal fusion. Though everyone thought my back was the real issue, somehow I knew it was more than that. I’d say just take it one moment at a time and continue to do what you are doing, which is the very best that you can. It’s so good that you are honest with how you feel and reach out to all of us on this forum. This site is the very best and it is the only one that I read daily and give input. I think it is wonderful that we can express our feelings, both the good and the bad, and say how we really feel without being criticized or told we shouldn’t feel as we do. I am comforted by what everyone writes and it truly keeps me going. Thank you for telling us how you are and please keep it up. We are all in this together 🙂
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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.
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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, I developed a complication afterwards. I had a leak of spinal fluid, through a hole that occurred, and it was resolved by a procedure in the hospital, called an epidural blood patch. The severe headache then completely went away and I was fine. I’m not sure if I’ll be having the second spinal tap, but I’ll be talking to my neurologist about it next week, to see what she thinks.
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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.
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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 know if these changes would be worse if I wasn’t on Radacava, so at least at this point, I’m still wanting to stay on it, hoping it is slowing the progression.
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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.
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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 he said that there are several factors that are causing my tiredness, in addition to the Radacava. He said having ALS alone could be a reason, as well as the Neuropathy in my feet and legs. So I’m not sure which of these things is causing the tiredness the most. Having my infusions 20 days each month has been incredibly draining in many ways, which has caused me to realize that I may reach a point where it’s time to stop these treatments. While I’m glad I’m not experiencing pain from my infusions, I find that exhaustion each day is very difficult to live with.
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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 can.
She then told me about a study that was done and the purpose was to determine what a person’s mindset and focus could do, and if it could possibly make a difference. She said they gave one group of people a squeeze ball, and they were told to squeeze it often during each day. The other group was not given a ball, and instead they were told to close their eyes and pretend they were squeezing a ball, and imagining their hand was getting stronger as a result. After a set period of time they brought back the participants in both groups. They tested each person’s hand strength. Amazingly, both groups had significant increased strength in their hands!! The determination as a result, was that your mind and your thoughts CAN make a difference! It was a simple study, but certainly gives reason for hopefulness that our attitude and our minds can only help our body, and why not try to be positive, as it certainly can only help us!
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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 the drug, and while it has stopped the waking at night, it hasn’t completely eliminated the daytime pain. It has not caused any increased weakness in my walking. I had previously tried Duloxetine and then Nortryptilene, but had to discontinue both because I they each caused a negative effect on my bladder function. I plan on continuing the Gabapentin, because overall my pain has lessened.
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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. I was told that he should be entitled, though it doesn’t specifically state his role under that group, other than being an “unpaid healthcare worker.” This person at the health department suggested I go with my husband and see if he will be questioned by the staff giving out the vaccines. I also brought my letter from my neurologist. As it turns out my husband was not questioned at all and received his vaccine without an issue, in the beginning of March. I was also told that restrictions have relaxed a bit so there was a good chance that he would get the vaccine and we decided it was well worth the attempt to just go. Good luck to all those on the forum as well as their caregivers.
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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 have never heard of these. I looked on Amazon and I am considering ordering them for myself. I noticed that most don’t have a heating element, to then provide the warmth I so desperately need. I found a pair that has the heat and I probably will order them, in hopes that they help.
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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 strength. One thing that does help is putting a heated throw on my legs and feet, during the day, when I don’t have my shoes and leg braces on. I find that helps me quite a bit, plus it feels great. I’ve even tried using a large heating pad on low, in bed at night, at least for a few hours.
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Thanks David, your words are very kind 🙂
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Thanks Amanda, that would be great!
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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
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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 was the primary caregiver for our 3 children who are mentally and physically disabled. My husband was the only one working, as my “job” was full time in itself. Our children are now 32, 32, and 30, and just 3 years ago they were placed in a medical home. It was such a great blessing, as I had begun to struggle physically to care for their significant and increasing needs. Thankfully, my health was generally good, and no sign of ALS back then. I am so very grateful every single day, that they are taken care of, and are safe. Being that I am now dependent completely on a walker or a wheelchair, and can no longer drive, I simply would not have been able to care for them, if my symptoms began back then. A very big part of me feels sad for my husband now, as he finally could feel life was a bit “normal”, not having to help with the caregiving, and now he is my caregiver. He has taken it so well, which I am incredibly grateful for. What is so helpful is that we are very used to having modifications in our home and limitations in every aspect of our daily life. I believe that our years of being caregivers to our children has helped us tremendously in our relationship now, as my abilities lessen. My husband just takes what I need in stride, and I know it isn’t easy for him as he still works full time. We both are thankful for what we went through during those years past, and since we are both so used to facing uncertainty, that it helps us stay close, despite this devastating diagnosis.
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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.
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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.
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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 the nurse said that they are going through each person’s file to determine what group they belong in. She said I’m in the high risk, plus I’m 65, so I would be with those being first called. She said no one, even the doctors, knows when they’ll get their supply. I’m just happy I’m on someone’s list, so time will tell!
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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 of time, but I am grateful to be in the top group now.
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I don’t know yet when I will be able to get the vaccine, but I look forward to seeing my family again. I have siblings who live out of state and have been wanting to come visit, but they have held off due to Covid. Family to me is everything, and I am so grateful for their love and support.
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Thanks Kathy, I do hope my husband can also get the vaccine when I do. I asked my primary doctor and she said she agrees of the importance, but didn’t yet know if he’ll be able to get it then. Thankfully he is healthy but not being 65 yet, puts him at the lowest level. My state, PA, puts those with an underlying medical condition at the 1c level, which means it’ll be a good amount of time of waiting still.
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I live in Pennsylvania and haven’t heard yet about getting the vaccine. I spoke to my primary care doctor and was told that they went through each of their patients’ files to determine their level of risk. Thankfully they put me in the high risk group, so as soon as they either get a supply for administering, or notice of where we need to go, they will call. I’m hoping it can be within the month, but that’s just my wish! I hope everyone with ALS can receive theirs as soon as possible! And Amanda, I greatly appreciate your mention of our caregivers also getting theirs, as somehow I hadn’t thought of their role being a determination. My husband is not yet 65 and he is healthy so I worried that he’d be in the last grouping. Now I’m not as concerned.