HopeNPrayer- Advance Directive discussion

[HopeNPrayer]

Hello there, You are all in my heart.

I haven't been on here for awhile. As I sit here working on my Advanced Directive , I realize I need help from this community. Where to begin? All I know is that I am more interested in quality of life over extending it. I just want to be comfortable. And definitely do not want the permanent trach. I am trying to understand what typically happens first....swallowing or breathing? I don't have Bulbar ALS. Do most agree to a peg tube/feeding tube? What mobiblity is typically available during these events? I know it is different for everyone so how do you anticipate? I appreciate any advice.

Thanks so much

 

[KimT]

It's so individual but I will post my thoughts. First, we all have the right to change our minds. In a way, my decisions are easier because I'm on my own with no CALS and no family.

I consider a feeding tube something that will help my quality of life. Many PALS continue to do everything after their tubes are placed. I think you have to wait about six weeks to go back in the pool, if you use a pool. I don't want to choke so, when the time comes, I'll get it done early on.

I already have a Trilogy but really don't need it. I should probably start using it at night so I'll get used to it. Same with cough assist. The cough assist is paid for and I sometimes use it to help expand my lungs which really helped my breathing. At this point permanent ventilation is not on the table for me, mainly because of the huge financial burden. I have a very good pain management neurologist here in town and I'm confident he will work with me and my hired caregivers when I'm in the end stage.

If you have family, the decisions cannot be made in isolation. I think starting the conversation early on is a good way to go no matter what your wishes.

Regarding the financial end, everyone should have a general POA and a specific medical POA. Everyone should also have a very specific advanced directive. I've attached something that might help. Again, you can always change your mind and also remember POAs end at death so all your finances should be dealt with in a way to avoid probate as best you can.

As far as what happens first, it's different with everyone. I know a lady who started out with PLS with a limp. Next bulbar came on and respiratory followed quickly. When she passed away she could still walk and move her arm. She elected to go without a feeding tube and that contributed to her flying free more quickly. I saw her a couple of weeks before she passed and she said she was ready. It was very hard to watch her try to drink but her caregivers were very good. She also lived alone with 24/7 paid caregivers at the end.

 

[KarenNWendyn]

I’ll add my 2 cents.

In addition to the Advanced Directive, be sure to fill out a POLST (physician’s orders for life sustaining treatment). Those differ from state to state and may be called different things in different states. But basically it is a set of orders that goes to a state registry after being signed by your physician. A copy often goes on your refrigerator, or at least a sticker with a state registry number. This directs paramedics what to do if they come to your home on a 911 call and you are unable to advocate for yourself. Do you want to be a full code, meaning CPR, electronic cardioversion, endotracheal intubation, mechanical ventilation?

The Advanced Directive is a little different. It doesn’t require a physician signature, but make sure your doctors and the local hospital have a copy. Things to specify in case you can’t advocate for yourself:
Feeding tube?
CPR and medication to restart your heart should you be found down in cardiac arrest?
Cardioversion? That’s where they shock your heart to get it started again if needed.
You can also specify if you want to be hospitalized or receive antibiotics.
Tracheostomy?

If you can advocate for yourself, you can override your Advanced Directive. You can also change your mind at any point as long as you put it in writing.

As far as the decisions people make, that’s entirely up to you. I opted for a feeding tube because my swallowing failed fairly early in my disease course, while I was still walking some, even though I am leg onset. If I had been significantly further along in my ALS course, I might have opted against it and gone on hospice at that point, not wanting to prolong things. I’m grateful I had the tube placed when I did. I absolutely don’t want a tracheostomy, and that is specified in my AD.

The sequence of failure varies so much from PALS to PALS. Some can still speak and swallow but are otherwise paralyzed. I’ve had failure in all regions but can still (mostly) move my limbs. I’m hoping I go down well before full paralysis. Some do, some don’t.

Make sure you review your decisions with your immediate family. If you sense any guff from them, it never hurts to make a video of yourself reading your AD while you still can. You want your wishes known and respected! I also have regular discussions with my spouse about how I want to go out, assuming something doesn’t take me out sooner.

 

[Clearwater AL]

Hope, from your first Thread... have you been diagnosed with an ALS other than Bulbar onset?
In your thread above you stated you do not have Bulbar ALS.
Maybe, if you wish, share your experience to diagnosis. It will help members better understand
your concerns.

PS Right under the title bar... General discussion about ALS/MND
there is a "sub forums" click on. The last one there is an excellent one Affected posted.

(Click on "Resources")

 

[mytmouz]

Thank you first of all for asking. As someone newly diagnosed, I have been wrestling with these types of questions. Personally, for me, I will do what I need until I lose limb function. I have lost my leg functions rapidly, and my arms are going. When that happens, I plan on stopping everything, including meds for other issues. I have always been a provider, and have no interest in being a burden on my family. I realize this may not be a decision that everyone agrees with, but it ultimately, my decision...

 

[lgelb]

As to the original question, which is compromised first, breathing or swallowing, most PALS whether limb or bulbar onset face needing both BiPAP to support breathing and a feeding tube, in order to get enough nutrition and hydration. Because tube placement depletes energy and a supine position for the procedure may tax breathing, that is why we advise that if you are at the point of BiPAP, that you get that first.

If you are asking when you would need a trach to be comfortable/survive, that point would usually come after a feeding tube, for you to have made it long enough to have such compromised breathing.

Most PALS do not reach the point of making a trach decision in terms of "you need a trach today or you will die" because they fade out, one way or another, before that point. However, since pneumonia and other unexpected circumstances could one day pose that decision, your answer should be documented in writing and discussed with your family or other proxy.

It is important to note that a trach/vent does not stop progression of paralysis and studies have found about a quarter of patients with trachs have no ability to communicate, although as technology is also progressing, this percentage should be reduced. However, a few PALS, such as Diane Huberty, have lived long-term with a vent while retaining some movement.


Best,
Laurie

 

[MarieLaure]

There is a French singer with als who keeps composing. His name is Pone. He has a Facebook and you can googlize his name. He has a trach and is very active on internet.
Just saying this. We are also wondering

 

[HopeNPrayer]

Hi Everyone,

Thanks so much for your feedback, it really helped. I took care of my AD this week. My lawyer was able to insert/include the ALS specific AD, thank you Kim. It also helped me think through situations, a great worksheet. Also, I included that to be sure my breathing is above 50% before PEG Tube surgery. I am relieved to have that behind me, MPA & POA.

I have limb onset, it started in my right foot-foot drop. I had been falling, losing weight, fasciculations, and mild atrophy beforehand...but didn't think it was anything serious. I realized that my toes were catching me and causing me to fall, found the term foot drop. That day, back in August 2017, I knew in my heart I had ALS. I walked into my primary and told her I was pretty sure I have ALS & needed to see a neuro asap. EMG in 4/2018 showed abnormal, possible-probable MND. 2/2019 Duke diagnosed me with ALS. Which would you consider a date to count life exp from? I'm 45, single, no hubby, no kids. Never saw this coming in a million years, like all of you!

I'm barely walking now, use a walker for short distances only. My core is under attack, cramps are painful..just got CBD oil to go along with tonic water & B Complex vitamins. Wow, we really use are core for everything. I feel like my progression has picked up the pace, I kinda see a step down about every 3 months. Thanks again for your feedback, I don't know why I visualized in the begininng, it going from limb to limb with complete parylisis before moving onto another limb. And breathing/ swallowing being affected last until the end. I see and hear that is not always the case. It is so strange how it is different for everyone.

 

[HopeNPrayer]

Also,

Thanks Karen, your informaton helped me find the wording for my AD. Thanks Clearwater, suggesting Affected's subfourm helped alot too. Igelb, you helped me understand the trach process more. Mytmouse, I feel very similar, I don't want to be a burden, esp with no hubby. And don't really want to be around very long if I am "locked in". Thank you Marie, I will look up this singer, I wish I was that brave.

 

[Bill Bog]

Thank you first of all for asking. As someone newly diagnosed, I have been wrestling with these types of questions. Personally, for me, I will do what I need until I lose limb function. I have lost my leg functions rapidly, and my arms are going. When that happens, I plan on stopping everything, including meds for other issues. I have always been a provider, and have no interest in being a burden on my family. I realize this may not be a decision that everyone agrees with, but it ultimately, my decision...

Thanks for posting this, it is my choice also and for the same reasons.

 

[MarieLaure]

Hope, I don’t think it is about being brave or not. It is about choices. The right choice is certainly the one you agree with intellectually and in your heart. Hugs