diagnosed Aug 12, 2022

[Andvari]

So... I had foot drop and slurred speech and thought I may have had a stroke. I am a veteran, so I went to the VA ER and they did a workup. CT head clear, labs good, Ultrasound carotids good, finally an MRI of the brain showed an "Acute to subacute infarct in the occipital lobe of my brain," They diagnosed me with a CVA, and discharged me. What they didn't consider is that the occipital lobe controls vision and not foot drop, nor slurred speech, nor the fasciculations that I was complaining about. A trip to the neurologist I have known for 20 years since I have worked at this VA for 20 years gave me a primary diagnosis of ALS. The EMG by another Neurologist, labs, MRI Cervical and Thoracic have provided adequate proof I have ALS. Enough so that I have been granted 100% service connection through the VA regional office. A follow up EMG at a separate hospital has provided me confirmation that the diagnosis is legit.

So... I got ALS. I am on Rilizule and Radicava, looking to get on Relyvrio if my provider will allow it with its high sodium content, but if she don't the provider at the other hospital said he would. I am following providers experimental stuff hoping to be a part of their tests since it is still just foot drop, slurred speech, weakened hand strength, loss off dexterity in my right hand, cramps in the legs and hands and forearms... I know it will get worse but, in the meantime, I am fully functional with my AFO brace.

So where do we do from here? I am able to be... for now... but I know I am going to lose that. I am tempted to be a badass, and call everyone's business out, but then you have that whole soul searching aspect of things. I guess I am still curious if this is the avenue to roll with to talk about the decisions a person has to make when they have been diagnosed with a disease that has no known cure?

 

[lgelb]

Sorry to welcome you. There are several vets who are active here.

As to your question, absolutely. We are all here to listen and many of us can offer our own [diverse] perspectives on what those decisions might be, how they can be framed, and what the outcomes have been. You can read past threads as well via the Search link up top.

Best,
Laurie

 

[affected]

Oh yes, you are in the right place.
As you get used to the format here, try the search function and find other recent or even old conversations.
Ask anything particular that you want to know more about, and vent as you need.
Sorry you are here, but then we are the best place to be.

 

[Mary2]

Sorry to welcome you here! Yes! It is tempting to take the bad ass point of view! So easy to get cynical! But in the end I always go the soul searching route! I am a caregiver. My husband has had ALS for a while, originally diagnosed as peripheral neuropathy. We stayed active for a long while. He worked and we went to college hockey games and to the beach and to the North GA Mountains. There is a nice group of active PALS and CALS here, so please jump right in and join us all!

 

[KimT]

First, thank you for your service. I’m so sorry you ended up here. Processing a terminal diagnosis takes time and it isn’t linear. Counseling helped me choose to live each day trying to be a good person and trying to help others. I also found speaking with other people who had ALS gave me different things to think about and focus on.

 

[MarkD]

Sorry to hear about this brother. I too am facing this. I am not to give you a sermon or anything (but check out my post on the Religion section if you want). As far as calling everyone's business out, I don't recommend. We want to be our best when we face death just as when we faced life. You being a vet tells me you are used to giving of yourself for something greater than yourself. That's how you want to go out, and how you can sleep better at night. Cheers, Mark

 

[MupstateNY]

Couldn't get the "multiquote" thing to work.

I don't understand "call everyone's business out" but you don't have to explain if you don't want to.

Re "I am still curious if this is the avenue to roll with to talk about the decisions a person has to make when they have been diagnosed with a disease that has no known cure?" I think we are allowed to talk about end of life decisions here. I mean, we kind of have to, I think.

 

[affected]

MupstateNY oh yes this is the place to talk about end of life decisions certainly.

 

[MupstateNY]

Thanks, affected. I'll dive in. I asked my ALS Center social worker for help with that and she sent me some stuff to start looking at. I was surprised to see that it all boils down to two questions: do I want life-extending interventions, and do I want artificial feeding. I thought there would be a lot more questions and gradations.

Here's how far I've gotten: when it's time for hospice services, I'd like to receive them at home, because I want to have my cat with me.

I'd like to see a more complete list of ALS-specific things one needs to decide about. Not sure why the ALS Center isn't providing that....

 

[Nikki J]

m you might like to visit the site youralsguide basic but well organized. The big decisions really are feeding tube or not and respiratory support yes/no if yes what kind how far will you go? There are end of life issues but I am not so sure you can really know until you are there. People change their minds on the first two issues too of course. And you need to give your spouse and family guidance on what ifs. Most als things you can see coming and discuss but supposed you have an accident or a medical event that leaves you comatose what then?

 

[affected]

It really is more graduated than that, but also reasonably simple.
A living will helps you work through some of the what ifs and as Nikki suggests having your family and carers fully aware of your wishes (and any changes as things progress) is a huge one.

 

[MarkD]

MupstateNY, maybe because I was an IT guy for thirty years, but this is the first thing I wanted to nail down when I was told I have ALS as well....to try to map out my path to death and what I do and do not want done on the way there. I first found this form, (https://www.vsb.org/sections/hl/Virginia_AD_Medical_Mental_End-of-Life_Healthcare_FULL.pdf), then I asked someone from the ALS foundation and my ALS clinic, if they had a copy of someone who has/had ALS who had filled this form out, so I could kind of get an idea of stage by stage end of life path they went on. I basically gave up on it, as no one had any examples for me, and in the end I just gave my wife full medical power of attorney and she will carry out my desires. Plus it was just too morbid for me to keep pursuing and dwelling on. I agree from what I can gather there seems to be two major decisions points along the way... ..feeding tube yes/no and tracheotomy yes/no. Another one I think is caregiver....stay at home and put it all on the family (with some kind of outside care assistance), or go to nursing home (if you can afford it).

 

[affected]

Mark one of the problems with wanting to map out so completely is that no two PALS follow the same path. ALS is not like diseases that have 'stages'.
You can use a living will to look at scenarios and what you feel is reasonable in types of scenarios.
You need to consider things like, if you fell and had a serious head injury, what would your wishes be if you are unconscious.
If you developed an aspiration pneumonia, what would your wishes be.
My husband went to hospital for one pneumonia but after returning told me he would not treat this again.

These kinds of things may be more helpful for you to map.

 

[Tomswife]

Good discussion. Tom has given me full medical and financial poa. If he is able to talk with me about issues as they arise, then we will talk. Nothing has been discussed in advance. I will pray, learn, consult with HCPs and decide.
I don't think a feeding tube for PALS is a end of life decision, especially for someone with Bulbar onset. Tom has had his feeding tube for over one month. We still go out ( but its really cold here). He enjoys his grandchildren and daughter and SIL. He is watching the new Jack Reacher (too violent for me). We play scrabble...etc.
And, the feeding tube is a very good example of how complex late stage health decisions can be. It depends on the overall prognosis and health of the PALS. There is a PALS on this forum who has had a tube for years...still enjoying what he is able to in life.
I dont think there is a checkist. A wholelistic viewpoint is needed. And very good, compassionate HCPs are needed to guide decisions.

 

[Andvari]

MupstateNY, when I talk about calling business out, I also work at the VA as a clerk and a union steward. I have spent 20 years fighting what appears to be a crooked system. I have often wanted to go public with matters but couldn't afford to lose my job and what about my future? Now at this point, my future is limited. I am 100% service connected. I will try to resolve matters in house but if that fails, there is stuff that needs to be fixed and going public is going to cause a lot of ripples if you know what I mean. That is what I mean by saying calling out people's business, it is more taking care of business.