My advice as a daughter and caregiver is this: make sure you plan everything in advance, and yes, take advantage of any equipment that helps you facilitate your daily life before you really need them, I mean in every way, because when the time comes for very difficult decisions, it is a great baggage for caregivers to make those decisions for you without feeling horribly guilty... Also, don't hesitate to ask for help whenever you need it, as you will need a lot of help, you should trust more than 1 person to do nonsense like cleaning your mouth, sounds silly, but you will remember me...we (caregivers) do it with love and never bother us to help... However, my main advice, from a daughter who fought in this fight incessantly is to tell you how important it is to enjoy every little moment with your loved ones, and to do whatever makes you feel happy. I pray to the Lord Jesus Almighty for you and your family... with love💕
I was just diagnosed with ALS and, I'm worrying about the future. I don't want to die in pain and, I'm looking for something related to 'euthanasia' if possible. I pray that I can when that time comes.
I am so sorry that you are going through this. My dad was diagnosed back in 2023. I am praying for you and fighting for you. Don't lose hope please. Your life matters, you matter.
@@kyle4684 Hello. I'm doing ok as far as having ALS. (Just have some Slurred speech and muscle weakness). I'm really sorry about your dad being diagnosed. I hope he's still doing good. Thanks for the kind words and tell your dad to stay strong.
I have AlS I have slurred spec h which comes and goes sometimes swallowing problem sometimes muscle weakness but my problem is breathing problem do you have breathing problem I have had this issue for like 5 years but not yet diagnosed
Hi, i’m sorry for you difficulty in breathing :( . How were you diagnosed ? What were your first symptoms ? My girlfriend started to have muscle twitches one month ago, and now she has then all over the body and muscle cramps. And also she feels weakness in one hand and leg. She’s going through a lot of anxiety now because she knows about ALS, she’s gonna see a neurologist next week
@@jorjocadan5808 this is my story. I copied it from my notes. I haven’t sugar coated it. Stay positive because it could be 100 different things other than ALS. Those “twitches “ you talk about are called fasciculations if they are part of ALS. If you click on my avatar, I have a few short videos of what my “twitches” (fasciculations) look like for comparison to hers. There have been some questions about my symptoms and onset. I am typing this in my notes on my iPad and hopefully it will copy/ paste over. Here is part of my story I want to point out that there is NO test to determine ALS. ALS is diagnosed by ruling everything else out so time is crucial. Only 10% of ALS patients are in a clinical trial. First noticeable symptoms …. The slight grade on the shower floor was throwing me off balance so I would wash my hair with one hand on the wall. Fatigue - I used to spend 6 hours in my yard and I started to last only 3. My gait was off and I slapped my feet when I walked … hindsight, known as Left Foot Drop My legs always felt full of blood. Like they we going to explode after a long day in the gym. Hindsight- my body was incorporating muscles not intended for the heavy lifting of walking which resulted in them being over exerted and full of blood. My wife is a Nurse Practitioner and connected all the dots. She got me in to see a neurologist ASAP. They did an EMG which is a test where they stick passive listening devices into your muscles at various points and listen to the sound of your muscles communicating. EMG has been around a long time. Yes, it hurts like hell…especially when they rammed the probe through the soft tissue under my chin in order to listen to my tongue. They also do a nerve conduction test where they shoot low voltage pulses into your muscles to test the communication between your nerves and muscles… yes, it hurts like hell too. After I was diagnosed locally, me, my wife and my sister drove from Alabama to the Mayo Clinic in Rochester, MN for a confirmation diagnosis. Great facility. Once confirmed we shifted into Clinical Trial mode. I got into a trial at Mass General Hospital in Boston. In my opinion, Mass General has the best neurology department in the world. My wife and I flew from Alabama and stayed in Boston for 5 days a month for 2 years. I received over 35 spinal taps with an experimental drug that has recently been FDA approved. UNFORTUNATELY, I developed severe side effects that were killing me faster than my disease so I had to pull out… after 2 years. It sucked but that’s what clinical trials are for. I am currently on a regimen of newer versions of older drugs until I can get into another trial which is a long shot because my lung function is declining due to my ALS. You must have a certain lung function to qualify for many trials. As of today, Friday, June 28, 2024 I am trying to get into a Phase 1 clinical trial. This one will be gene therapy and not pharmaceutical. I did a Slow Vital Capacity at my local pulmonary clinic just to self check and see if I could pass a test. The Clinical trials I have been involved with and have researched usually require a SVC of 65%…. I blew a 75% so I’m good. Now, it’s a waiting game for the company to start enrollment. I hope the trial starts before my SVC declines below 65% because that will exclude me from participating in the trial
For one thing, we need an attention getter (eg: the 'ice gimmick') which attracted World-wide attention. I met many people who had never heard of ALS until then. It was a great idea! Also, having a commemorative day in MLB besides the fact that Lou Gehrig had ALS many years ago. People need to realize how many suffer TODAY with that disease. People need to know how they can HELP make an impact in doing something NOW!
Thanks so much Dr Alaho Olu on RUclips first of all for who you are as a person thank you for the wonderful work that you do for people in general no matter where you are I will always listen to your podcast and refer people to you because you care about people and the human body I listen to other people but you talk about the true disturbances disorders that means things that are out of order in the human system thanks 🙏 for curing my Amyotrophic lateral Sclerosis disease (ALS)…..
Indeed Als is worst disease we need urgent cure but pls even don't forget ppl suffering worst pain like trigeminal neuralgia it has some surgery n different antidepressants to lower it but it's temp most of time so we need permanent cure for trigeminal neuralgia and even pls don't forget 50 million only in USA suffering with worst cursed sound call ringing ear they too need urgent cure n other ppl who got paralysed, all this other disease are still small infrony of Als but they r making life hell n many chooses death as escape, so please cure for all its important, instead of wstting trillions on weapons n nasa space exploration use that all resources to find cure
THIS IS A ABSOLUTELY HORRIBLE DISEASE. IT SHOULD NOT EXIST. NO ONE SHOULD SUFFER THIS
My advice as a daughter and caregiver is this: make sure you plan everything in advance, and yes, take advantage of any equipment that helps you facilitate your daily life before you really need them, I mean in every way, because when the time comes for very difficult decisions, it is a great baggage for caregivers to make those decisions for you without feeling horribly guilty...
Also, don't hesitate to ask for help whenever you need it, as you will need a lot of help, you should trust more than 1 person to do nonsense like cleaning your mouth, sounds silly, but you will remember me...we (caregivers) do it with love and never bother us to help...
However, my main advice, from a daughter who fought in this fight incessantly is to tell you how important it is to enjoy every little moment with your loved ones, and to do whatever makes you feel happy.
I pray to the Lord Jesus Almighty for you and your family...
with love💕
I was just diagnosed with ALS and, I'm worrying about the future. I don't want to die in pain and, I'm looking for something related to 'euthanasia' if possible. I pray that I can when that time comes.
I hope ur still alive
I am so sorry that you are going through this. My dad was diagnosed back in 2023. I am praying for you and fighting for you. Don't lose hope please. Your life matters, you matter.
@@kyle4684 Hello. I'm doing ok as far as having ALS. (Just have some Slurred speech and muscle weakness). I'm really sorry about your dad being diagnosed. I hope he's still doing good. Thanks for the kind words and tell your dad to stay strong.
I have AlS I have slurred spec h which comes and goes sometimes swallowing problem sometimes muscle weakness but my problem is breathing problem do you have breathing problem I have had this issue for like 5 years but not yet diagnosed
Diagnosed 7-14-20. I am having difficulty breathing now.
Hi, i’m sorry for you difficulty in breathing :( .
How were you diagnosed ?
What were your first symptoms ?
My girlfriend started to have muscle twitches one month ago, and now she has then all over the body and muscle cramps. And also she feels weakness in one hand and leg. She’s going through a lot of anxiety now because she knows about ALS, she’s gonna see a neurologist next week
@@jorjocadan5808 this is my story. I copied it from my notes. I haven’t sugar coated it. Stay positive because it could be 100 different things other than ALS. Those “twitches “ you talk about are called fasciculations if they are part of ALS. If you click on my avatar, I have a few short videos of what my “twitches” (fasciculations) look like for comparison to hers.
There have been some questions about my symptoms and onset. I am typing this in my notes on my iPad and hopefully it will copy/ paste over. Here is part of my story
I want to point out that there is NO test to determine ALS. ALS is diagnosed by ruling everything else out so time is crucial. Only 10% of ALS patients are in a clinical trial.
First noticeable symptoms ….
The slight grade on the shower floor was throwing me off balance so I would wash my hair with one hand on the wall.
Fatigue - I used to spend 6 hours in my yard and I started to last only 3.
My gait was off and I slapped my feet when I walked … hindsight, known as Left Foot Drop
My legs always felt full of blood. Like they we going to explode after a long day in the gym. Hindsight- my body was incorporating muscles not intended for the heavy lifting of walking which resulted in them being over exerted and full of blood.
My wife is a Nurse Practitioner and connected all the dots. She got me in to see a neurologist ASAP. They did an EMG which is a test where they stick passive listening devices into your muscles at various points and listen to the sound of your muscles communicating. EMG has been around a long time. Yes, it hurts like hell…especially when they rammed the probe through the soft tissue under my chin in order to listen to my tongue. They also do a nerve conduction test where they shoot low voltage pulses into your muscles to test the communication between your nerves and muscles… yes, it hurts like hell too.
After I was diagnosed locally, me, my wife and my sister drove from Alabama to the Mayo Clinic in Rochester, MN for a confirmation diagnosis. Great facility. Once confirmed we shifted into Clinical Trial mode. I got into a trial at Mass General Hospital in Boston. In my opinion, Mass General has the best neurology department in the world. My wife and I flew from Alabama and stayed in Boston for 5 days a month for 2 years. I received over 35 spinal taps with an experimental drug that has recently been FDA approved. UNFORTUNATELY, I developed severe side effects that were killing me faster than my disease so I had to pull out… after 2 years. It sucked but that’s what clinical trials are for.
I am currently on a regimen of newer versions of older drugs until I can get into another trial which is a long shot because my lung function is declining due to my ALS. You must have a certain lung function to qualify for many trials.
As of today, Friday, June 28, 2024 I am trying to get into a Phase 1 clinical trial. This one will be gene therapy and not pharmaceutical. I did a Slow Vital Capacity at my local pulmonary clinic just to self check and see if I could pass a test. The Clinical trials I have been involved with and have researched usually require a SVC of 65%…. I blew a 75% so I’m good. Now, it’s a waiting game for the company to start enrollment. I hope the trial starts before my SVC declines below 65% because that will exclude me from participating in the trial
You got to be active to fight this
For one thing, we need an attention getter (eg: the 'ice gimmick') which attracted World-wide attention. I met many people who had never heard of ALS until then. It was a great idea! Also, having a commemorative day in MLB besides the fact that Lou Gehrig had ALS many years ago. People need to realize how many suffer TODAY with that disease. People need to know how they can HELP make an impact in doing something NOW!
The ALS foundation gives you something to put on your front door to let them know an emergency that there is an ALS patient in the house
is the straw that he's using for the mechanical breathing???
What you think..????
@@RobdeKlerk-qg6lc true just thought I'd ask.
@nathanjoerndt5021 scary my friend...you are sick if I may ask ?
@RobdeKlerk-qg6lc sick??? if I was sick I wouldn't be feeling well. but guess what I am not sick.
Thanks so much Dr Alaho Olu on RUclips first of all for who you are as a person thank you for the wonderful work that you do for people in general no matter where you are I will always listen to your podcast and refer people to you because you care about people and the human body I listen to other people but you talk about the true disturbances disorders that means things that are out of order in the human system thanks 🙏 for curing my Amyotrophic lateral Sclerosis disease (ALS)…..
Indeed Als is worst disease we need urgent cure but pls even don't forget ppl suffering worst pain like trigeminal neuralgia it has some surgery n different antidepressants to lower it but it's temp most of time so we need permanent cure for trigeminal neuralgia and even pls don't forget 50 million only in USA suffering with worst cursed sound call ringing ear they too need urgent cure n other ppl who got paralysed, all this other disease are still small infrony of Als but they r making life hell n many chooses death as escape, so please cure for all its important, instead of wstting trillions on weapons n nasa space exploration use that all resources to find cure
Is he still alive today my husband had ALS for 3 years and he passed in the 3 years he had it
What a horrible disease. How sad.