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It makes sense that people with diseases like ALS would be on the priority list for the vaccination. On The ALS Association is advocating for each state to make that happen. Have you heard what is going on in your state in regards to pALS and caregivers having access to the vaccination?
https://www.als.org/navigating-als/living-with-als/covid-vaccines for more information about The ALS Association’s role.
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I haven’t heard anything about what is going on in my state in regards to this. I already got the first vaccine three days ago but it wasn’t because I have ALS. It was because I was a volunteer at a hospital.
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im living with ALS and dealing with it myself i have no one to really help me as the symptoms become more severe in time I’ll have to get help i would like to get the vaccine but feel other’s who are worse off should have it since i am not 100% on the same page as the disease I’ve been struggling with options life or death neither one is appealing to me I’m alone 95% of the time and managed to avoid the virus so with all honesty passing it on to those who truly need it would be the best way for me
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We’re in Washington state and it sounds like, as of today, Steve will be eligible for the next group. He’s over 65, so that puts him in two high risk groups. We’re hoping by the end of February but will certainly accept it asap if the process picks up the pace. I haven’t heard anything about how at-home caregivers fit into the vaccination picture in our state. It would make sense that we would get them at the same time. I guess we’ll see.
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Hi Amanda i was a nurse before my ALS diagnoses. Now i had to stop working it was not possible anymore for me. In the Netherlands the first persons to get the vaccine are all the medical workers and by some mistake they send me an invitation too. I will not accept this vaccine because it is ment to be for a medical worker and i no langer are. But if all went to plan all the people with diseases wil get the shot in februari so i have to wait a few weeks.
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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.
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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’m in Georgia. I contacted my GP (I’m her first and only ALS patient) and asked if my husband (my caregiver) and I could get the vaccine. Her office replied right away and we’ll be getting the vaccine on Friday. I believe Georgia is making the vaccine available to those who are 65+ and at high risk.
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Hi, I live in the UK, so our National Health Service (NHS) is free to all at the point of delivery. And, although we talk of a postcode (zip code) lottery, generally it’s the same high quality of service throughout the land. I’m waiting for my letter inviting me for a vaccine, guaranteed by 15 February – I’m 63. All over-70s and those who are clinically extremely vulnerable qualify. My 93 year old Dad had his first jab last week. As of today, 4,266,577 people in the UK have received first jab.
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Hi Folks,
I live in Mass. and have ALS. I am 70 years old and cannot get vaccinated. I have contacted MGH, my primary care provider, and the state Dept of Public Health. It seems that ALS is not a priority here. By the way, I have a friend who works in billing in a hospital who is a healthy 30 year old. He works remotely and has not been in the hospital since March. He got his vaccine two weeks ago. Really!
Tom
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Hi Amanda. From what I have read about Riluzole (a medicine frequently taken by people with ALS), to me it would make sense to COVID-19 vaccinate pALS sooner rather than later. https://www.wikidoc.org/index.php/Riluzole_(patient_information)
Under the section ” What other information should I know“, the following is stated:“Riluzole can affect your body’s ability to fight infection. If you have any illness, especially one with a fever, call your doctor.”
Rich
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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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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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I’m in Florida and over 65 so I qualify even without ALS. I’ve heard nothing yet on when extending to pALS. Like Amanda says our distribution in Fl is a mess. Here in our county even though 65 and older are eligible, there are 250,000 of us competing to get on website or call lines. We can not register and wait. Latest mess is people having to stand in line at Publix or calling in at 6am for a chance to get an appt. There is talk of a state system but who knows.
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We’re in Ga and no special handling of pALS (my wife). We got our 1st shot (Moderna) 3 weeks ago by getting lucky on the sign-up. Emory is our ALS clinic and said they are using what they have for staff. Our primary care doctors don’t have any vaccine and basically sent an email saying ‘don’t call us, we’ll call you’. We live in Fulton County they refued to schedule us for the 2nd shot when we got the 1st. Told us we had to try to get an appointment on our own. Apparently there was an uproar over that approach. I got a recent email scheduling the 2nd Pfizer shots but not the Moderna. We are hoping that they will contact us for the 2nd shot before our window opens on the 10th.
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If I properly read the CDC website, ALS is considered an underlying condition which means people with ALS should get the vaccine at a higher priority.
If you go to the following CDC website and scroll down to the “Neurologic conditions such as dementia” section, you will see that ALS is mentioned.
Additionally, as stated in a previous comment, from what I have read about Riluzole (a medicine frequently taken by people with ALS), to me it would make sense to COVID-19 vaccinate pALS sooner rather than later. If you go to the following website;
https://www.wikidoc.org/index.php/Riluzole_(patient_information)
Under the section ” What other information should I know“, the following is stated:
“Riluzole can affect your body’s ability to fight infection. If you have any illness, especially one with a fever, call your doctor.”
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Thanks Kathy 🙂
For those who want to read my column, here is the link:
My COVID-19 Vaccine Included a Shot of Positive Attitude
I’m looking forward to the 2nd one…the world moving forward…and our new, new normal!
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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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