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Brandi

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Hi everyone,

I have received an unofficial diagnosis and am losing my speech quickly, along with lots of respiratory weakness and breathing issues. My voice appears to be going first (especially tongue weakness) and I was wondering how long it took those who have lost the ability to swallow to progress from loss of voice to complete dysphagia? I am refusing a feeding tube and it would be helpful to hear time frames, although I fully understand it looks different for everyone.
 

Larrytbm

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My wife began having minor speech issues in Jan., was diagnosed with ALS in May. She has been on a feeding tube since July and is maintaining weight. She can barely speak at this time and can only swallow a few liquids with the proper consistency. Avoiding a feeding tube greatly increases your risk of loosing weight or worse, pneumonia and time in the hospital.
 

Atsugi

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The decision to take feeding tubes, ventilation, and other life extending treatments has two sides to it.

Some folks want to live longer, even if they are totally paralyzed.

Some folks don't want to live totally paralyzed.

Of course, the individual Person with ALS makes the decision, but it also affects family members, especially the Caregiver.

Some caregivers feel they will do anything for their loved one, as long as it takes.

Others, after a few years of caring for a paralyzed person, feel that their marriage has been superseded by a patient/nurse relationship, and are greatly upset because they are not allowed to continue their lives without ALS.

Some food for thought. ALS is definitely a difficult disease for the entire family, with no or few options.

Whatever path a person chooses, no one judges you here.
 

Brandi

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My wife began having minor speech issues in Jan., was diagnosed with ALS in May. She has been on a feeding tube since July and is maintaining weight. She can barely speak at this time and can only swallow a few liquids with the proper consistency. Avoiding a feeding tube greatly increases your risk of loosing weight or worse, pneumonia and time in the hospital.

Thank you so much for this information, Larry, and for the support you give your wife. You are a true gift.

I have no family and am completely alone. Wonderful friends but no one who could take on a caregiver role. I wish to die as quickly as possible to prepare for my next birth.

Did your wife completely lose her ability to swallow? Was she able to open her lips?

A deep bow of gratitude.
 

Atsugi

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Moved this thread to the DIHALS subforum until Brandi's diagnosis is official.
 

KimT

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Brandi,

I'm alone, too. I do have wonderful friends but they are not capable of caring for me. When do you see your neuro again?

We're here for you and you will not be judged for anything. We all are in different positions, have different resources, different beliefs, and different rates of progression.
 

Larrytbm

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I have no family and am completely alone. Wonderful friends but no one who could take on a caregiver role. I wish to die as quickly as possible to prepare for my next birth.

Did your wife completely lose her ability to swallow? Was she able to open her lips?

Brandi,

I'm so sorry that you do not have a CALS that can assist you deal with this disease. I'm an engineer and really lacking in medical knowledge. But my wife still has facial muscle control, she uses a nebulizer and can yawn. It is the throat muscles that are weaker that results in food and saliva getting into the lungs and causing problems. Her doctor recently told us that after swallowing, if she coughs within 15-20 seconds, that is a good indication that solids and liquids are getting into the lungs. I hope this helps you.
 

Brandi

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Problems getting bi-pap

Hi all,

I have my first visit to the ASL clinic next week. Will they be able to prescribe a bi-pap? The sleep clinic has been quite useless and slow. What stats specifically do they need to have to prescribe the bi-pap? My oxygen went down to 88 during a home study but I was told this was not a dangerous enough level and that bi-pap is only prescribed when the respiratory acidosis becomes chronic; meanwhile I am losing memory, feeling confused and disoriented, having blurry vision, and wildly fluctuating heartrate.

Any suggestions would be so useful. I would be happy to never see the sleep doctor again.
 

Brandi

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Hi Kim,

You must be incredibly strong. May I ask how you manage logistically without a caregiver? How do you get to doctor’s appointments, communicate, etc.?

I am concerned about who will advocate for me at later stages when/ if I need long-term care.

I would love to learn from you.

Brandi



Brandi,

I'm alone, too. I do have wonderful friends but they are not capable of caring for me. When do you see your neuro again?

We're here for you and you will not be judged for anything. We all are in different positions, have different resources, different beliefs, and different rates of progression.
 

David

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Re: Problems getting bi-pap

Brandi,

Please keep your conversations to the "Do I have ALS" (DIHALS) section of the forum. I have moved your post there.

We pray you don't have ALS, but should you receive a diagnosis then your questions would be suitable for other areas of the forum. Understand, it's very time consuming and effort consuming for people with ALS to respond to those that think they may have ALS, and instead, more productive for the community to focus their attention answering questions for those that have ALS.
 

Atsugi

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We discourage "quoting" the post you are replying to, because it is difficult for some of us to scroll through too much text. Thanks.
 

Nurse321

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Hi everyone,

I have received an unofficial diagnosis and am losing my speech quickly, along with lots of respiratory weakness and breathing issues. My voice appears to be going first (especially tongue weakness) and I was wondering how long it took those who have lost the ability to swallow to progress from loss of voice to complete dysphagia? I am refusing a feeding tube and it would be helpful to hear time frames, although I fully understand it looks different for everyone.
Hi Brandi, I am newly diagnosed with Bulbar ALS in Sept. 2017. Started to have slow slurred speech in Oct. 2016. Speech is totally gone after 7 months. I just got the PEG in Nov. 2017 due to swallowing issues and wt. loss. Wt. is stable now. You are not alone in this struggle. I am an RN but this disease knows no boundaries. Hugs for you. I am scared but never tell that to my family. The feeding tube is a life saver for meds and extra nutrition. I can eat soft/pureed foods. Just trying to stay strong.
 

Firefighter58

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Hi Brandi
I can not speak at all, and about three years ago I was having a lot of trouble swallowing, I could not eat most foods and nearly drowned every time I tried to drink, I now have Peg but surprisingly I do not need it, I have regained the ability to eat. I don't know how or why but I now eat anything I want, though much slower then I used to.i have not improved in any other way but according to my neurologist I have had no progression in the last year. I still use the Peg twice a day for meds and vitamins so I am glad I have it, the meds and vitamins taste terrible. This is a strange disease and it is said you can not improve, but I have, but I still can not speak .
Al
 

KimT

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Hi Brandi,

I'm sorry but I didn't see your response to my post. Some days I'm terrified and other days I'm happy and full of hope. Right now I can still drive a car. Last year I fell and sprained my good ankle. I had to have friends drive me to doctors for nearly a year but I'm back behind the wheel, for now.

a friend and I share a condo. He is not my CALS and it isn't working out the way we both had hoped. I had to take my pension in a lump sum so I can afford to live at home for a few years, possibly. I have a sweet lady who comes in once a week for $12 an hour. She does laundry and cooks meals in a crockpot. I can still walk but cooking and cleaning are tiring and dangerous for me. I have a cleaning service but I had to cut back to once a month for financial reasons.

Honestly, I don't have a solid plan for when I progress to the point of not being able to care for my personal needs. I have some ideas but not a solid plan. I did have my room remodeled so I have a roll in shower and bidet toilet. I held off on getting a ceiling track lift because I'm just not sure if i'll be able to stay here for the duration. My fear is outliving my money, then what?

Mine was leg onset but, early on, they thought I had breathing issues. I think they were wrong and my breathing was just sub-normal because it has not progressed much in three years. I did have a paralyzed vocal cord but it, also, stayed the same for two years. No further paralysis. They have no explanation for that. I do bite my cheek and cannot speak as articulate and quick as before but that might just be my imagination. When you spend hours and hours alone, your mind can do strange things to your body.
 

Brandi

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Dangers of using bi-pap without a prescription?

Hi all,

What would be the specific caution/ danger of getting a bi-pap and using it without a prescription? Most research says early on bi-pap is ideal, but a few doctors have told me that the respiratory acidosis must be chronic before it is prescribed.
 
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