Bulbar ALS - Some Questions

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ColleenMarie

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PALS
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I am having my visit with the ALS Clinic today and they feel like I need a cough assist machine and Trilogy. Are these items typically supported by insurance? To those who have Bulbar, I worry about how fast things progress once you are using trilogy, any exercises you found helped. Everything I read says BALS is more aggressive and this is terrifying on its own. I still work, drive and do things as best I can and of course, time changes reality quickly. My voice is so much worse from how it sounded 3 months ago. I know everyone is different but this type of onset of ALS seems harder to get information on. Thank you so much. I often read comments because the information is so helpful and educational. Thank you to everyone who comforts, informs and honestly helps each other.

The other thing is how do you manage the fear, the grief. I worry about how this impacts loved ones. I think that breaks my heart the most. I take an anti-depressant, I keep busy and try to live in the moment, to plan and stay optimistic. However, after losing a friend to ALS early last year and now having this myself - it just feels overwhelming. Thank you and sorry I am rambling. Nice to connect to people who understand, who have this terrible illness.
 

Rolo1973

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I have Bulbar. It started in January 2021 and by June 2021, I couldn't eat, speak or drink anymore. I was attempted to do speech therapy and exercises, but things are slowly progressing with me. Back then I could do mechanic things, build stuff, but today I can barely walk and life things only up to like 20lbs.

The only struggles I have are with certain people including family and friends. Often they assume the wrong things about what I am thinking and feeling at times. It is tough to not say words with real emotions. I am forced to be silent, so I tend to be most of my days.
 

Aaronmandevill

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I have a pretty aggressive version with respiratory onset. From all the research I have seen using NIV such as trilogy increases lifespan a lot compared to without. And from reading on here (members I trust very much) have mentioned getting started on it earlier than even when insurance will approve.

I don’t need it (BiPap) to survive right now but I’m working on adjusting to it, which seems to take some effort/time.

Also I can’t say I have my anxiety fully managed (didn’t expect to have to have the death thoughts at 36), but what has helped so far is to realize that we all must pass someday, which means we must all eventually come to terms with this fact.

What’s working right now for me to keep calm is to realize that worrying doesn’t help me at all and just to focus on living while we have life. On the contrary, Dr. Bedlack believes high stress leads to faster progression. I do feel better now that I completed my will, power of attorneys, acquired medical hardware, started riluzole, wishes for care, and tips/tricks manual for family on a cloud drive.
 
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swalker

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What is covered will depend on what insurance you have.

I have Medicare parts A and B along with a Medicare supplemental policy (plan G).

My cough assist is covered by that insurance, along with a bipap (Resmed Astral 150), bipap humidifier, batteries, stand, masks, hoses, etc.

I don't think there is any magic formula for dealing with fear and grief. They are a natural consequence of what we are dealing with. Everyone is going to handle that in their own way. For me, keeping busy helps.

I try to keep my mind engaged with meaningful projects. I have also put a significant emphasis on trying to do things now that I know I will not be able to do in the future. How far in the future, I do not know. So, if something is hard today, I still go ahead and try to do it. I know that it will likely be even harder next week. As a result, I have done a surprising amount of travel. I have gone skiing (in an adaptive biski). I have taken wheelchair rides deep into the backcountry of some national parks.

I have become fascinated with wheelchairs, so wheelchair projects occupy a surprising amount of my time. An example is when I replaced the lead acid batteries with lithium cells in my four wheel drive wheelchair. That was quite the project and required the help of a friend to do the heavy lifting. But, I was able to dig in and understand what was needed and lay out the project. I did quite a bit of the lightweight work. It kept me occupied for several months.

Steve
 

KimT

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I have the same insurance as Steve. Medicare Plan A and B with Supplement G. Aside from a very small yearly deductible of around $200, everything has been covered at 100% including Trilogy and cough assist. The Trilogy is set up as a rental so but the cough assist is a purchase (eventually.). I now own my cough assist. Both devices can help you live a better quality of life and, according to Mayo, live longer. You can use the cough assist to expand your lungs or use simple breath stacking (see You Tube.)

The one drawback, if you're young, is the plan G will cost up to three times more than if you're 65 in many States such as Texas and Florida. In NY, it would be the same. Be very careful of Medicare Advantage plans. You can get a broker to work with you and explain what is covered with every option. All I can say is I'm glad I chose the supplement. My PWC was close to $30,000 and my insurance paid for every penny. Same with Trilogy, cough assist. If you go the supplement route, you will also need a Plan D that covers drugs. Again, there are many plans and it depends on your zip code the cost and coverage.

Your doctor at clinic will have your breathing assessed and that will determine if you get approved for a Trilogy. All Medicare requires is a letter. They don't require the results of your test (an employee of Medicare told me this.).

I hope your appointment went well.

As far as coping with this disease, everyone is different. Maybe being on antidepressants before I got diagnosed numbed me out a bit but I didn't panic. I was sad but I tried to remain busy and live the best I could. I was already 60 so it wasn't such a loss as someone younger. My heart breaks for the young folks with kids.

Being a PALS is something only a PALS can really understand. Thankfully, there are other PALS who can offer you support.
 

ColleenMarie

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The information, thoughts and generosity in sharing your experiences truly keeps me going. I can only say I send you each my gratitude and love. Without this community, without you I would have been in more darkness. To take time to communicate when we all know time to be this precious is a gift I treasure.
.
I do believe that stress and worry make everything worse - I agree. It is good to be occupied and passionate about what we have right now, in that moment. I do feel that I can control some small things and that in turn lightens those powerless around me suffering because of this. It might be just enjoying hearing the rain or frogs outside. I feel anguish for those who are younger than me fighting this, as another person mentioned - those with kids. The cruelty of this illness is unbearably awful. I will refer back to your responses over and over. I just saw some of the new telescope images and they are stunning. It does make you realize that the universe is grand, gorgeous and mysterious beyond our wildest dreams. We are united together in this journey and the compassion we have for each other. When things are tough, I know that others have been there, lived it and I need to be strong for those who have been so courageous. thank you
 

Aaronmandevill

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@ColleenMarie The pictures truly are amazing, I love how much we don’t know about the possibly infinite nature of the universe or how it all began.

I do love hearing the rain and the sound of locusts/crickets from growing up in Oklahoma.

Now that I’m getting the BiPaP settings down it’s so much more comfortable and I have a ton more energy. Definitely worth getting it so you can tune it. Just post here if any issues and we have an expert who can help adjust everything.
 

ColleenMarie

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Aaron - I wonder too. When we think what we "discovered" just in the last 100 years here it does make you realize there is an infinite number of wonders out there. Knowing that is truly magical. So Incredible.

My energy is really an issue so I am hoping this helps. From what I have read here it is good to do this sooner, not later. I want to be as active as possible for as long as I can. So they are ordering my machine now and a cough assist device. Right now fatigue is a real issue. Knowing I can ask questions here helps. At the Clinic things are rushed, I do not see people often enough. I go back in September for my next visit. Asking people here has serenity, community. I feel safe asking questions that probably seem insignificant but people here understand or experienced first hand.

Thank you!
 

Firefighter58

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.
 
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Believer

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My PALS began with a little bit of raspiness in his voice in January, 2021. Slowly his speech was affected. By July our daughter's could only understand about half of the words he spoke. He got a speech device through a grant with the State of Texas but it was too late to pre-record his voice. With me he wrote on a white board as much as he used the machine. The 3rd of November he got a feeding tube. That relieved so much stress for him. He had a BIPAP, cough assist, and nebulizer. He qualified for the nebulizer because he had been a smoker when he was younger. All of those helped him a lot. He drove until the beginning of April, 2022. He was able to walk with a walker until the day before he passed away but had gotten to where he couldn't stand on his own about a month earlier. His wheelchair came the first of May, however I wish he had gotten it sooner. He slept in the recliner the last two and a half months because he couldn't breathe lying down even in an elevated hospital bed. Sorry if I have given too much information. His symptoms began in January 2021, we were pretty certain of the diagnosis in August but got the final diagnosis after a second EMG on September 15, 2021. On May 29, 2022 he started having more trouble with his breathing and his oxygen levels were dropping. He woke up about every two hours to go to the bathroom, was aware of everything and everyone and at about 7:00 pm he just stopped breathing. I did not expect things to progress so quickly.

With regard to grief. You are grieving and all of your family and friends are grieving. Even though you cannot speak, I urge you to let the people closest to you know what you are feeling. Even though my husband shared some I always felt like he kept a lot of his thoughts to himself so that he wouldn't upset me. When you love someone you want to know what they are feeling. People with bulbar onset have the communications hurdle to climb as well as all that goes with very difficult disease. Hug your loved ones often and let them know how much you love them. I would like to be able to say to my PALS I love you one more time. Our faith is what helped on this most difficult journey. Keep coming to this group for help and encouragement.
 

Firefighter58

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Hello ColleenMarie, as you can see from my profile I have been battling this disease for years and I still look forward to tomorrow. That being said I can no longer speak, I am confined to a wheelchair and I no longer have the strength I once had and can no longer do many of the things I once did but I accept that for being a fact of life now. I like Rolo1973 have Bullbar and after 40 years with a big city Fire Department and 50 years in the heavy towing and recovery business I was very active but that came to an end with ALS but I don't let it win, I fight it every day
I once had a cough assist machine and I used it for a month or two and sent it back as I felt it was not needed, that was about two years ago and I guess I was right, I still don't need one.
M neurologist suggested I get a feeding tube about 6 years ago and I got one but I still eat in the normal way and only use the tube for foul tasting meds and vitamins so you can't always depend on your neurologist to know the future ether.
Al
 

Bleue

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My mom’s bulbar ALS experience was a lot like Believer. She was put on Prozac and Xanax because she was very depressed and had severe anxiety about her diagnosis. I would say that everyone’s journey is different but reading what to expect can help-but remember it may not happen. Believer’s husband was mobile, my mom wasn’t. But she also had 2 surgeries (4 mths prior to diagnosis) and minor injuries after diagnosis that probably led to a faster progression.
From a CALS POV i’d like to add to please stay safe and do not over exert yourself and definitely do not injure yourself-falls are dangerous. A lot of PT and OT do not know how to work with ALS patients even though they say they do. I have anger towards many of them.
Also, please ise whatever you need to safely stay mobile and to save your energy. ❤️
 

ColleenMarie

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Thank you so much for your kind and generous reply. I am trying to pace myself and save energy, to be careful. This week I got a cough assist and Trilogy machine and I meet with a surgeon for a feeding tube in September. Time goes by, things change. I think the psychological challenges are hard to define, so awful. I grapple with that and try to work at being in the moment. Fatigue has been an issue. I take a short nap most days and do my best. In the past, I never could take a nap to save my life. I have this new life that just has different rules and exists in a realm of uncertainty. The people who respond, their comments have kept me going. My family is doing what they can and friends, but the people here understand fully, have lived this, are living it. To me it feels like a safe place to be a refuge. I am so grateful for that.
 
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