Thank you for sharing your story. It must take a lot to make these videos and post them for the world to see. You’re helping a lot of people feel less alone in this. Please take care of yourself and I hope you feel alright ♥️
So very sorry to learn of your ALS diagnosis. My sister was diagnosed with limb onset ALS 5 1/2 years ago and we lost her 3 years ago. 😢 I wish you only the best on your ALS journey and I definitely recommend looking for any local ALS support groups.
Thanks for having the courage to share your story.I am currently going through a process trying to get diagnosed with whatever is going on with me.I am being referred to an ALS clinic which alone terrifies me but I need to know good or bad.I appreciate you sharing such a vulnerable experience.Sending lots of positive vibes to you
It was a relief to know wat it is. Just a shitty news. But mistake that I made is telling myself that I was not giving up by doing certain things. But I e recently realized I was playing the victim. Once I got over that I’m doing anything my body will let me. I focused too much on being an advocate for ALS. Rather than living. That was my excuse for laying around most days. I hope they find something cureable for u. But whatever they find, don’t let it get you down and keep living. Every day is hard but don’t let that take over ur mindset
Thankyou so much for your kind words ❤I try and just tell myself one day at a time.The frustration of the all the different Dr’s is something else.It takes a lot of bouncing around to get answers.At first they thought it was my back though my lower back MRI was clear.My physiotherapist was the first one to realize something was really wrong and after doing anything with me I was so burnt out I couldn’t walk.She started the process of getting me proper help.I’m glad I found your channel even though I don’t know this is what is I feel you understand.You have a positive outlook and that helps so much
So sorry... Getting an ALS diagnosis is worse than getting a cancer diagnosis. Even worse is that there is absolutely no way to prevent it. I just read that some drug has finally been approved for use to possibly slow down the progression of ALS. I hope it'll soon lead to medical advances that would at least HALT the advancement of the disease and possibly reverse it.
My right hip is bad, I have atrophy in the thigh gluteus area. However I have thigh pain and swelling which isn't indicative of ALS. I get my third EMG in two weeks.
I asked because we saw the video you posted about being frustrated with insurance. My father was just diagnosed last month and as a veteran he is 100% covered by the VA. This is not something that any doctor ever asked my parents about and it wasn't until my sister and my husband ( who is also a vet ) looked into it that we discovered all the help available to veterans. We wish you all the best ❤️
@@rachaelcullen1462 thanks. I appreciate the questions and very valid question. Thankfully insurance finally approved the chair. Which I’m planning to do an update soon on. Thanks again for the thoughts
Thank you for sharing your story. It must take a lot to make these videos and post them for the world to see. You’re helping a lot of people feel less alone in this. Please take care of yourself and I hope you feel alright ♥️
Praying for you! I know what you're going through.
So very sorry to learn of your ALS diagnosis. My sister was diagnosed with limb onset ALS 5 1/2 years ago and we lost her 3 years ago. 😢 I wish you only the best on your ALS journey and I definitely recommend looking for any local ALS support groups.
Rick
Thanks for the kind words and I’m so terribly sorry about ur sister. I do use the support from ALSA they r wonderful.
Thanks for having the courage to share your story.I am currently going through a process trying to get diagnosed with whatever is going on with me.I am being referred to an ALS clinic which alone terrifies me but I need to know good or bad.I appreciate you sharing such a vulnerable experience.Sending lots of positive vibes to you
It was a relief to know wat it is. Just a shitty news. But mistake that I made is telling myself that I was not giving up by doing certain things. But I e recently realized I was playing the victim. Once I got over that I’m doing anything my body will let me. I focused too much on being an advocate for ALS. Rather than living. That was my excuse for laying around most days.
I hope they find something cureable for u. But whatever they find, don’t let it get you down and keep living. Every day is hard but don’t let that take over ur mindset
Thankyou so much for your kind words ❤I try and just tell myself one day at a time.The frustration of the all the different Dr’s is something else.It takes a lot of bouncing around to get answers.At first they thought it was my back though my lower back MRI was clear.My physiotherapist was the first one to realize something was really wrong and after doing anything with me I was so burnt out I couldn’t walk.She started the process of getting me proper help.I’m glad I found your channel even though I don’t know this is what is I feel you understand.You have a positive outlook and that helps so much
Praying for you
Thank you for sharing brother
So sorry... Getting an ALS diagnosis is worse than getting a cancer diagnosis. Even worse is that there is absolutely no way to prevent it. I just read that some drug has finally been approved for use to possibly slow down the progression of ALS. I hope it'll soon lead to medical advances that would at least HALT the advancement of the disease and possibly reverse it.
I also have ALS,is a very bad situation to live with
How are you now
My right hip is bad, I have atrophy in the thigh gluteus area. However I have thigh pain and swelling which isn't indicative of ALS. I get my third EMG in two weeks.
Hi, how it was?
@joelalejandroguerrerovela8571 only right forearm showed psw/fasc/and fibs...
@@RAINYDAYS00505 Do you have a diagnosis?
What is psw?
@@joelalejandroguerrerovela8571 positive sharp waves
Are you a veteran?
I am not
I asked because we saw the video you posted about being frustrated with insurance. My father was just diagnosed last month and as a veteran he is 100% covered by the VA. This is not something that any doctor ever asked my parents about and it wasn't until my sister and my husband ( who is also a vet ) looked into it that we discovered all the help available to veterans. We wish you all the best ❤️
@@rachaelcullen1462 thanks. I appreciate the questions and very valid question. Thankfully insurance finally approved the chair. Which I’m planning to do an update soon on. Thanks again for the thoughts