@frankiereedsr
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Frankie a reex replied to the topic Has your State made the COVID-19 Vaccine available to pALS and caregivers? in the forum Coronavirus (COVID-19) and ALS 10 months, 2 weeks ago
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…
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Frankie a reex posted a new activity comment 1 year ago
My cramps are so bad I’m getting them now in my neck and its killer pain then my neck want’s to stay sideways hard to get it back straight again sucks really it does my arms are pretty much dead can’t use them my whole body is cramping up damn wow
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Frankie a reex posted a new activity comment 1 year ago
I’ve started having pain in my thighs after only being in my wheelchair for 20 to 30 mintues I believe I’m getting this pain is because I’ve been losing a lot of muscle in turn leaves me with less cousin around my joints witch causes pain I started using the egg crate style cushion its working for me maybe it’ll help your husband good luck
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Frankie a reex posted an update 1 year ago
@amanda-sifford well things are looking favorably would really love to change that word but at this point I can only say favorable because my diagnoses isn’t 100% complete the doctors that did test on me while in the hospital for not being able to move arms 4 or 5 th time in hospital same symptoms no diagnosis yet they would just do what ever it…[Read more]
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Frankie a reex posted a new activity comment 1 year, 2 months ago
Things are looking better than yesterday at least someone is going to contact me and help me get into a trial need all the help I can get thanks for all the help
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That is good news!! How did it work out?
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Frankie a reex posted an update 1 year, 2 months ago
Wow good news I am finally getting something done with a clinic trial will find out after 330 pm today thank God my spirits are lifted up for a change right on
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Good news for sure, Frankie! Let us know what you find out… and, which trial are you wanting to join?
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Frankie a reex posted an update 1 year, 2 months ago
Hello everyone well I just don’t like going to sleep because I know that when I wake up a little bit more of me will have died I’m having so much trouble breathing everyone wants me to allow my doctor’s to put a breathing tube in I just want allow that no mechanical help to prolong life….this is on my DNR order I don’t know of any other options…[Read more]
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Frankie – – has the local ALS Association (ALSA) been in touch with you at all? The ALSA Care Coordinator can offer help and ideas for when living alone with ALS. Let us here in the forum know if we can offer suggestions to help you as well.
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Frankie a reex posted a new activity comment 1 year, 2 months ago
Well another day with out finding out anything about ALS cincel trials I really need to start getting test done so I can tell my children that they just might get this nasty ass disease it’s going to kill me knowing this
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Frankie a reex posted an update 1 year, 2 months ago
Woke up this morning and my arm’s are almost completely gone say 97% my neck is losing muscle its getting harder and harder to hold it up and I can’t seem to find anyone who is willing to help me with this disease its like they are afraid of catching it from me its getting old trying to manage this disease myself this is when I start wishing that…[Read more]
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Dagmar Munn and
Frankie a reex are now friends 1 year, 2 months ago
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Amanda and
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Well another day with out finding out anything about ALS cincel trials I really need to start getting test done so I can tell my children that they just might get this nasty ass disease it’s going to kill me knowing this
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Frankie a reex posted an update 1 year, 2 months ago
Wow I am having so much trouble using my arm’s I am not doing to good texting right now today has been hell on me. Thought that I would be able to handle it but not doing so good right now maybe tomorrow will be a better day
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Frankie a reex posted an update 1 year, 2 months ago
Well my job was a roofer did 5that for 27 years while also working in the casinos as a blackjack dealer delt cards for 13 years I had to take a medical retirement do to my illness I really haven’t been able to come to reality yet about not being able to work I really don’t know why because I have come to to grips about dying I am good with that.…[Read more]
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Frankie a reex replied to the topic To voice bank or not voice bank in the forum Mobility Aides, Assistive Technology and Medical Equipment 1 year, 2 months ago
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How are you doing
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Frankie a reex posted an update 1 year, 2 months ago
Nothing just thought I would write a little bit about myself I am 62 years old I. Was first diagnosed back in 2019 but I was miss diagnosed for almost 2 years really put a strain on my mind didnt have long to cry about being misdiagnosed and it really hurts because I don’t have much time to get ready to die mother fuckers
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Frankie a reex posted a new activity comment 1 year, 2 months ago
It’s a death sentence ALS I don’t want to live like this its not a life it’s killing me a little bit at a time I just don’t want to be like this anymore I know they’ll find a cure but not in my life time
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Frankie a reex posted an update 1 year, 2 months ago
Well I haven’t came 100% to grips yet with this disease ALS, everything that I do is a challenge just to get dressed is mine blowing all I really do is figure out ways to die..man I was always full of life now I’m full of thoughts of death…sad truth
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Hi Frankie – – yes, it’s a new learning experience to teach ourselves how to live our lives while living with ALS. I too was surprised at the slowness of my movements, getting dressed was in itself a “workout” and, the dips in energy were new too. But you/we still have our brains – – and can figure out creative ways to keep our lives moving…[Read more]
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Frankie a reex posted a new activity comment 1 year, 2 months ago
Amanda I am interested in any trials that promote treatment new medications just any thing that will.help
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I sent you the ALS Association’s number for your local chapter. They should be able to help you research and reach out for help. Also, sometimes our community members may have some suggestions on what to look into. I’ll post a discussion topic.
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Frankie – – have you seen this online compilation of current clinical trials? It is up to date and very helpful.
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Frankie a reex posted an update 1 year, 2 months ago
Well the last few days I’ve been planning my death what I am going to do and when right now I am avoiding food. Eating very little for the past 3 weeks.im going to die my way not the way that this nasty ass disease is telling me how I’ll die my way at my time and place I’m not afraid of dying I am afraid of living. I’ve made peace with those who I…[Read more]
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Frankie,
I’m so sorry that you are losing your strength and mobility. It makes sense to me that you are focusing on having some control over your choices when ALS has taken so many away. Planning for your departure is understandable if you are nearing the end. Have you discussed your wishes with your loved ones? Have you or your caregiver…[Read more]-
Does Hospice have counselors or social workers to speak with?
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Frankie, i hear you and i to am at peace with leaving my body and this disease. You are brave and a good soul! I know this is hard to reach this point but I don’t want my family watching this slow death . Good luck and my thoughts are with you ❤
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It’s a death sentence ALS I don’t want to live like this its not a life it’s killing me a little bit at a time I just don’t want to be like this anymore I know they’ll find a cure but not in my life time
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Frankie a reex posted a new activity comment 1 year, 2 months ago
I am almost 3years now I was misdiagnosed for almost 2 year’s but I only have been diagnosed for 18 months ago 3 years 6 months, 2to5 life span average person only living for 3years guess I’ll owe ALS at least 6 months
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Thank you for that suggestion. I will certainly pass it on to my friend. These forums provide much needed support to everyone affected by ALS – thank you.