Amyotrophic Lateral Sclerosis (ALS) Lou Gehrig’s disease

Posted by allegro @allegro, Sat, Apr 27 9:54am

WE ARE DEALING WITH MY HUSBANDS ALS AND IT S DEVASTATING…I AM FIGHTING DEPRESSION AND PANIC ATTACKS,,,CAN ANYONE OFFER SOME HOPE????? JAN

@jenniferhunter

@allegro Thanks, Jan. I am doing OK now. It was the hardest 2 years of my life, but I had more time to spend with my dad at the end of his life which meant a lot to me. My parents never had to take care of their parents in old age and really just saw their own side of the issues. Loosing control of things made them a bit demanding, but my dad did see how much physical pain I was in and worried about me. In my negotiating with him about getting a feeding tube placed, I promised I would get my spine fixed. The problem with that is no local surgeon would help me, and after the 2 years with my parents and 5 refusals, I sent a request to Mayo. After my dad passed, I came to Mayo and had the spine surgery I needed. Even as I was recovering after my spine surgery, I was getting complaints from family members because I couldn't drive to go help my mom and take her to appointments, and I said that I needed to be cleared by my surgeon.

I wanted to make you aware about aspiration and you might want to discuss the choking during feedings with your husband's doctor. It might not just be phlegm. My dad also had a nebulizer he used with asthma medication to get his lungs clear. That is easy to use and it helped. My dad reached the stage where he was unable to swallow anything correctly and had aspiration pneumonia a few times. It even happened from swallowing his saliva into his lungs. He had a feeding tube through his stomach wall and wasn't allowed any food by mouth which of course frustrated him since he didn't believe it was a problem. When a patient stops eating solid food the stomach shrinks, and then has less ability to accept a liquid feeding, so feedings become a slow drip with an IV bag. If my dad started coughing during a feeding, he could cough up his stomach contents, and there were some times when he started coughing and choking that I opened the stomach tube like a drain pipe to empty his stomach to keep it from going up into his throat and then to his lungs. He had to remain upright for an hour after a feeding before laying down to allow the stomach to empty. I understand your concerns and it might be a warning sign. Aspiration can cause a fatal heart attack.

Jump to this post

@allegro – It's very difficult to watch a person you love struggle with functions that have been automatic all their lives. I watched my mom struggle with this as she had Parkinson's Disease.
As you know ALS attacks muscles, making them weak and then progresses. This is most likely what is happening. Perhaps you could speak with your doctor to see if you can get some training to help both of you in the coming months. Here are a couple of sites you might want to read. Do you think that your doctor will help with this?

https://www.alstexas.org/navigating-als/for-patients/speech-swallowing/
https://www.homewatchcaregivers.com/resources-and-specialty-care/als/als-caregiver-tips/als-eating/

REPLY

,@allegro Hi Jan from reading @jenniferhunter ,s,post I just remembered there is something that we used on patients that had a swolloing problem I can't think of the name but the Dr will maybe @becsbuddy knows the name you would put it in the food or drink ,darn wish I could remember the name I will later ☺️

REPLY
@lioness

,@allegro Hi Jan from reading @jenniferhunter ,s,post I just remembered there is something that we used on patients that had a swolloing problem I can't think of the name but the Dr will maybe @becsbuddy knows the name you would put it in the food or drink ,darn wish I could remember the name I will later ☺️

Jump to this post

I remember using Thick-it which can thicken fluids to make them easier to swallow. While I was in rehab, the therapist used an electrical stimulation device on my throat. Not fun, but it helped! Get a referral to outpatient therapy and ask to see a speech therapist. Worked for me., good luck!

REPLY
@becsbuddy

I remember using Thick-it which can thicken fluids to make them easier to swallow. While I was in rehab, the therapist used an electrical stimulation device on my throat. Not fun, but it helped! Get a referral to outpatient therapy and ask to see a speech therapist. Worked for me., good luck!

Jump to this post

@allegro Hi Jan. A speech therapist can help with retraining swallowing. My dad did that and it may have helped a little. They do swallowing tests like a moving X-ray to watch how it works. We did use Thick-it (dry powder) when my dad could still swallow and another one called Simply Thick which worked better because it was a gel in a pump bottle. Here are some links.

http://thickit.com/
https://www.simplythick.com/Bottles-Pumps
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3660277/

REPLY
@becsbuddy

I remember using Thick-it which can thicken fluids to make them easier to swallow. While I was in rehab, the therapist used an electrical stimulation device on my throat. Not fun, but it helped! Get a referral to outpatient therapy and ask to see a speech therapist. Worked for me., good luck!

Jump to this post

@becsbuddy Thank you Mind just couldn't think of it That sounds like fun having that electric on your neck ,ouch

REPLY
@jenniferhunter

@allegro Hi Jan. A speech therapist can help with retraining swallowing. My dad did that and it may have helped a little. They do swallowing tests like a moving X-ray to watch how it works. We did use Thick-it (dry powder) when my dad could still swallow and another one called Simply Thick which worked better because it was a gel in a pump bottle. Here are some links.

http://thickit.com/
https://www.simplythick.com/Bottles-Pumps
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3660277/

Jump to this post

@jenniferhunter Thanks for remembering

REPLY
@jenniferhunter

@allegro Hi Jan. A speech therapist can help with retraining swallowing. My dad did that and it may have helped a little. They do swallowing tests like a moving X-ray to watch how it works. We did use Thick-it (dry powder) when my dad could still swallow and another one called Simply Thick which worked better because it was a gel in a pump bottle. Here are some links.

http://thickit.com/
https://www.simplythick.com/Bottles-Pumps
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3660277/

Jump to this post

I CAN'T THANK ALL OF YOU ENOUGH FOR YOUR INPUT AND I AM CALLING OUR DR ON MONDAY TO SEE WHAT CAN BE DONE ABOUT MY HUSBAND'S CHOKING…..HE SPENDS MOST OF HIS TIME IN THE BATHROOM TRYING TO GET THE PHLEGM OUT OF HIS THROAT…..THEY TOL D HIM IT WAS CAUSED BY THE NUTRITION HE IS TAKING SIX TIMES A DAY……

REPLY

ALS is a chronic illness and you living in fear is not going to help him. I live in fear daily until yesterday. I took a couple of punches to the face and it made me realize two things: I do not have a glass jaw and its good to be hard headed. Not to make lite of the situation; however, once you face your fears– you realize their is nothing to be really afraid of. My docs probably are going to be mad at me but I could not stand by and let two innocent kids be hurt by their own mom who admitted she was on a controlled substance and not in her right mind.

REPLY
@stonereject45

ALS is a chronic illness and you living in fear is not going to help him. I live in fear daily until yesterday. I took a couple of punches to the face and it made me realize two things: I do not have a glass jaw and its good to be hard headed. Not to make lite of the situation; however, once you face your fears– you realize their is nothing to be really afraid of. My docs probably are going to be mad at me but I could not stand by and let two innocent kids be hurt by their own mom who admitted she was on a controlled substance and not in her right mind.

Jump to this post

Hi @stonereject45, Living in fear can be debilitating. You're right. That's why many members find Connect to be so helpful. Here they can tell others openly about their fears and get support so that they can find strength to face them and the courage to move forward. Fear has a tendency to reappear unexpectedly too. And that's okay, we're here to listen and support.

Now to you. Are you facing a diagnosis of ALS or someone you care for? It sounds like you are dealing with someone who is having to face the reality of addiction.

REPLY
@allegro

I HAVE GOOD DAYS AND BAD DAYS….SOMETIMES I THINK I CAN'T DO THIS ANYMORE, AND THEN I REALIZE HOW MUCH HARDER IT IS FOR MY HUSBAND AND I SHOULDN'T FEEL THIS WAY……I WAKE UP EACH DAY WITH AN ANXIETY ATTACK BUT IT FINALLY PASSES WHEN I HAVE TO START THE CARETAKING…..HE DOES NOT WANT TO GO TO A FACILITY AND I THINK HE WOULD RESENT ME IF I FELT HE SHOULD….ALS STANDS FOR "A LIFE STOLEN" IN MY ESTIMATION……..

Jump to this post

Hello @allegro I am late to this conversation and not sure how I wasn't aware of it, but wanted to chime in. As they say 'better late than never'. It is great you have found the Mayo Connect community!

I am Scott and I was the caregiver for my wife during her 14+ year battle with brain cancer. The day to day grind of caregiving is intense and emotionally and physically draining for sure! One of the important things I learned as a caregiver is "Superheros only exist in the comics! Superman and Wonder Woman are not ever found in caregiving". We, as caregivers, can only do what we can and that varies by individual. Love is our fuel, which is better than any souped up, racing blend there is!

I also want to endorse what was mentioned by @debbraw and @colleenyoung about hospice. In my wife's case it was a very important added piece of her care. She had been ill for about 12 years when he prescribed hospice for her. She made the decision to opt for home hospice and in our situation it was a great decision. Hospice nurses were a tremendous help, they got her a hospital bed, meds got delivered, and she got great care. While the doctor said she might live for 6 weeks in hospice care, my wife fought for 14 months. The caregiving was still intense on my part, but it was manageable at a point where there was no way I could have done it alone any longer. In my wife's case home hospice was a great option for her late life care.

I also kept an old feather pillow on our sofa, which when times got extra tough used for a punching bag. I beat on that pillow and cried into it more times than I can count! It served a needed service — until late one night about 2 am, I laid into it, my watch caught the fabric, cut it, and suddenly I had feathers all over! At least while I cleaned them up I was laughing at myself 🙂

I will only add one more thing — another quote I like, which I think fits us caregivers. "Courage does not always roar. Sometimes it is a tiny whisper which says 'tomorrow I will try again."

Please feel free to ask me any questions you might have and I hope the sun is shining wherever you are today!

REPLY

@allegr I've been thinking of you and wondering how everyone is doing now Hope your getting all the needed advice and it's helping

REPLY
@IndianaScott

Hello @allegro I am late to this conversation and not sure how I wasn't aware of it, but wanted to chime in. As they say 'better late than never'. It is great you have found the Mayo Connect community!

I am Scott and I was the caregiver for my wife during her 14+ year battle with brain cancer. The day to day grind of caregiving is intense and emotionally and physically draining for sure! One of the important things I learned as a caregiver is "Superheros only exist in the comics! Superman and Wonder Woman are not ever found in caregiving". We, as caregivers, can only do what we can and that varies by individual. Love is our fuel, which is better than any souped up, racing blend there is!

I also want to endorse what was mentioned by @debbraw and @colleenyoung about hospice. In my wife's case it was a very important added piece of her care. She had been ill for about 12 years when he prescribed hospice for her. She made the decision to opt for home hospice and in our situation it was a great decision. Hospice nurses were a tremendous help, they got her a hospital bed, meds got delivered, and she got great care. While the doctor said she might live for 6 weeks in hospice care, my wife fought for 14 months. The caregiving was still intense on my part, but it was manageable at a point where there was no way I could have done it alone any longer. In my wife's case home hospice was a great option for her late life care.

I also kept an old feather pillow on our sofa, which when times got extra tough used for a punching bag. I beat on that pillow and cried into it more times than I can count! It served a needed service — until late one night about 2 am, I laid into it, my watch caught the fabric, cut it, and suddenly I had feathers all over! At least while I cleaned them up I was laughing at myself 🙂

I will only add one more thing — another quote I like, which I think fits us caregivers. "Courage does not always roar. Sometimes it is a tiny whisper which says 'tomorrow I will try again."

Please feel free to ask me any questions you might have and I hope the sun is shining wherever you are today!

Jump to this post

@allegro @IndianaScott Care giving is tough and it's one of the most meaningful jobs you can do for a loved one. Aside from hospice, there is also palliative care which is a different level of care that involves home health nurses that visit and monitor the patient at home. They can coordinate bathing and give advice if they think the doctors should be consulted. My dad had end stage heart disease and impaired judgement because of a head injury years earlier, and didn't want to go on hospice. I think to him it meant personal failure and he didn't want to die and leave my mother alone. That wasn't something he could change or control, but not officially being on hospice gave him some sense of control in his mind.

My parents were adamant about avoiding nursing homes except for the necessary rehab stays they both had after breaking bones from falling, and both required wheelcahirs. I was the family member nominated by everyone else to step in, and my siblings left that responsibility entirely to me. I hired and managed caregivers directly when I could find them, but there was no backup except me if workers didn't show up.

After one of my dad's hospital stays, I was able to get the powers that be to setup a hospital bed for my dad in the living room. He was getting to the point where he couldn't roll himself over in bed and required help to transfer and was just dead weight. I didn't have the physical strength to lift him which is what he always wanted, and I got a Hoyer Lift. He got depressed about that, and I told him it was for me because I was too weak to help him. That was true. I was doing all this physical and personal stuff at a time when I was in need of spine surgery for cervical stenosis for myself. There were times that I fell asleep sitting up and woke up in a lot of pain. The hospital staff always had a team of people to move a patient, but I was doing it alone. That is what is so hard, and there isn't much time to rest. If a patient gets up during the night and you interrupt your sleep to help, it gets harder. At best, I was only able to get back home half the time, and I used time at home to do payroll and pay bills, and often I would have to leave to go to the emergency room to advocate for my dad or mom. During this time, my mom also had ankle surgery caused by her injuries from a previous fall, and I was her attendant.

After my dad passed, I was able to come to Mayo for spine surgery. My mom wanted to stop employing caregivers, and she agreed to stay in her wheelchair and not try to walk on her own, and has done fairly well in the last 2 years. She can't drive, and I'm still her attendant for health care appointments, and grocery and medicine delivery person, but I don't have to stay at her home now. It's not a perfect solution, and I worry about her, and check on her often.

Care giving is difficult. Even though the burden was hard, I would still do it again if I had it to do over, and I have no regrets about how I handled the responsibility and for the time I spent with my dad. They didn't understand the burden of care giving that they put on me and really believed they could handle things themselves, but I know that I gave them more time together because I stepped in and advocated for them. At times, I had to convince my dad to go to the emergency room and I would get him to go because she was worried. He just didn't understand when he was in a serious situation. That becomes a balancing act when you are negotiating with a person who can't properly make decisions. A few years prior to this when they were still on their own, my mom would call me when my dad wasn't quite right, and I would get a sense of what was wrong and have her send him to the Emergency room. He never wanted to go, but it saved his life so many times.

Liked by cmael

REPLY
@colleenyoung

Hi @stonereject45, Living in fear can be debilitating. You're right. That's why many members find Connect to be so helpful. Here they can tell others openly about their fears and get support so that they can find strength to face them and the courage to move forward. Fear has a tendency to reappear unexpectedly too. And that's okay, we're here to listen and support.

Now to you. Are you facing a diagnosis of ALS or someone you care for? It sounds like you are dealing with someone who is having to face the reality of addiction.

Jump to this post

I PRAY FOR ALL WHO ARE DEALING WITH THE DREADED ALS DIAGNOSIS…MY HUSBAND IS BEING ADMITTED TO A VETERANS HOSPITAL NOW AS HE HAS PROGRESSED TO A STAGE WHERE HE NEEDS 24/7 CARE WHICH I AM UNABLE TO GIVE HIM…MY HEART IS BREAKING AS AFTER BEINGTOGETHER FOR 66 YEARS WE ARE NOW BEING TORN APART BY THIS INSIDIOUS DISEASE.I TOOK CARE OF HIM WITH ALL THE LOVE IN MY HEART AND NOW WE ARE REACHING THAT POINT WHICH I HAVE DREADED……I PRAY EACH NIGHT FOR A CURE EVEN THOUGH IT IS TOO LATE FOR US…….JAN(ALLEGRO)

REPLY
@allegro

I PRAY FOR ALL WHO ARE DEALING WITH THE DREADED ALS DIAGNOSIS…MY HUSBAND IS BEING ADMITTED TO A VETERANS HOSPITAL NOW AS HE HAS PROGRESSED TO A STAGE WHERE HE NEEDS 24/7 CARE WHICH I AM UNABLE TO GIVE HIM…MY HEART IS BREAKING AS AFTER BEINGTOGETHER FOR 66 YEARS WE ARE NOW BEING TORN APART BY THIS INSIDIOUS DISEASE.I TOOK CARE OF HIM WITH ALL THE LOVE IN MY HEART AND NOW WE ARE REACHING THAT POINT WHICH I HAVE DREADED……I PRAY EACH NIGHT FOR A CURE EVEN THOUGH IT IS TOO LATE FOR US…….JAN(ALLEGRO)

Jump to this post

@allegro I'm so sorry for you maybe they could put an extra bed in your husband's room

REPLY
@allegro

I PRAY FOR ALL WHO ARE DEALING WITH THE DREADED ALS DIAGNOSIS…MY HUSBAND IS BEING ADMITTED TO A VETERANS HOSPITAL NOW AS HE HAS PROGRESSED TO A STAGE WHERE HE NEEDS 24/7 CARE WHICH I AM UNABLE TO GIVE HIM…MY HEART IS BREAKING AS AFTER BEINGTOGETHER FOR 66 YEARS WE ARE NOW BEING TORN APART BY THIS INSIDIOUS DISEASE.I TOOK CARE OF HIM WITH ALL THE LOVE IN MY HEART AND NOW WE ARE REACHING THAT POINT WHICH I HAVE DREADED……I PRAY EACH NIGHT FOR A CURE EVEN THOUGH IT IS TOO LATE FOR US…….JAN(ALLEGRO)

Jump to this post

@allegro – Oh Jan, my heart breaks for you. I cannot imagine how much this hurts. Please know that there are lots of people here wishing you the best and sending you good thoughts.

REPLY
Please login or register to post a reply.