Diagnosed 4 days ago

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lauralibrary

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DX MND
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10/2021
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I was diagnosed 4 days ago. Bulbar ALS. In those 4 days my speech has become noticeably less clear. By the time I see my neurologist Oct 26th I may not be able to make myself understood anymore. I wonder if the EMG testing didn't start ALS moving. Before I had the EMG test (nerve conduction and needles stuck in muscles, including my tongue) I could speak fairly clearly and had no muscle twitches. Now I miss consonants and have a lot of twitches in my upper body.

I am single, 68 years old. I retired immediately upon diagnosis. I was hoping to have a year of retirement, but I now wonder if I'll make it 6 months.

My first thought was to go the route of Death with Dignity--we have legislation in Washington DC where I live--and forego tube feeding and breathing assistance. I have good friends, most of whom are still working, but I live alone, and I can't see spending all my living moments trying to get assistance through my insurance or the George Washington Hospital, which can't even get its patient portal working. It has a certified ALS clinic, but I have to wait till Oct 26 to even find out when I can get into the clinic.

The first 4 days since diagnosis was a horrible period of time. But I have decided to push away all the bad feelings. I've gotten them out. That's enough. Now I am wondering if what I need to do is gather the strength to end this properly. I have a phone conversation appointment with a hospice.
 

lgelb

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Very sorry to hear this news, Laura. There is no evidence that EMGs worsen ALS, but I would certainly rest up as any kind of trauma can cause fatigue and perceived progression. Diagnosis is its own trauma, for sure. Of course, progression occurs, but usually not the extent of what you report in four days. Still, you might want to start testing speech apps for your phone, tablet, and/or laptop. The search box at the top right may be helpful, or ask us anything.

As to how and when you shuffle off this mortal coil, that is completely your choice, but you may want to absorb the diagnosis and options before making definitive plans. You may have pushed out the bad feelings, but cognitively, processing and decision-making takes longer than four days, even for decisions that are much less personal.

If GWU is not pulling its weight, you might consider contacting the ALS clinics in Baltimore (Hopkins and UM). You can make multiple appointments, get on cancellation lists, etc. Apart from insurance networks, there is no reason that you need to stay in DC for clinic.

We'll support you however we can, of course.

Best,
Laurie
 

affected

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I'm really so sorry about this diagnosis. Welcome to the place we wish we didn't need.

The EMG can't have done anything.
But the shock of the diagnosis truly can. It is a huge thing to receive this diagnosis, and we all can react differently to that shock.

I would certainly check your options on how to end with dignity. It's good to know what control you have.
But I would also try to take a step back and explore your options for living well until then.
The shock is not something you can control, and it can affect you for weeks, even a couple of months, tho it will ease off.

We have resources here on anticipatory planning, dealing with the early days after diagnosis, and other helpful things.
We can also talk things through.

We often say 'day at a time' and when that is too much, just do 'an hour at a time'.
 

Nikki J

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My sister was diagnosed at GW. She went to JHU for clinic though and ultimately because she loved her third opinion doctor to Mass General but that wasn’t because of dissatisfaction with JHU

get in touch with the Brigance Brigade as well as ALSA for support services. Recod your voice. You may not have time for full voice banking but words to loved ones mean a lot. Also they can do a lot with a little these days for voice synthesis. There is a clinic for helping you with voice technology. Jhu referred my sister. I do not remember if it was at jhu I think so.

the emg didn’t make you worse but shock stress and fatigue would. Also though I like to believe myself level headed right after diagnosis I thought I had significant progression in my affected leg in 2 months . I actually didn’t but it was a combination of stress and being hyperaware.
 

Fusia

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Laura,
I am very sorry you're here. But, this is a great place for finding information, getting questions answered, connecting with some wonderful people. I also live alone and have found this site to be a tremendous help.

I was diagnosed just over two years ago, with limb onset. I still have a fairly strong voice and the ability to eat and swallow, but my hands and arms really can't do much of anything today. My legs are also getting quite weak. However, I am still able to get by with 4 to 5 hours of paid help each day - to help with showering, dressing, cooking, and feeding. Technology has been a huge help - while you would use different forms of technology than I do because of our different progressions, it would likely be a huge benefit to you. So, I would encourage you to start looking for a caregiver or two that you enjoy having around. You could start what just a few hours a week and build from there as you need it. I do recommend trying to find someone without going through an agency, unless your insurance will pay and requires you to go through an agency. I would also encourage you to start researching technology that could help you - it's much better to get started early rather than waiting when it becomes much harder.

I also don't think you should rush into deciding one way or the other on Medical Aid In Dying at this point. You need to give yourself some time to process the diagnosis and see how things go for you. You will have time to get that in place down the road if you wish.
 

lauralibrary

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I think you are right. It was just the trauma of diagnosis. My friends tell me they don't think my speaking has changed. Thank you for your message and encouragement. This diagnosis requires working up a new set of attributes, ahem. I am going to have to acquire patience and strength first and foremost, and not least find gratitude.
 

rnewton60

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I was diagnosed with Bulbar onset ALS on 11/01/19. My doctor asked me how I was feeling right after she told me her diagnoses. I said I had a full intellectual understanding of what she had told me but I thought it would take 30 days or longer to process it emotionally. I will second what others have told you but ALS does not move that fast for anyone else I have ever heard from. It moves slowly for me. Relentlessly it moves though slowly. I also took an optimistic view point. I tried full on despair for 15 minutes but that didn't do me any good so I decided to focus on the positive aspects of having ALS. Here are a few. Time to say goodbye to family and Friends. Financial freedom. I was 59 when diagnosed, and I was within six months of retirement. I had to learn to spend money and I am happy to say I did learn how to do that quickly. If you have saved up enough to live on for 20+ years it isn't hard to figure out how to spend more if you have only two years to look forward to. But having an optimistic outlook has helped me deal with this relentless disease much better than despair did.
 

Greerguy

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Laura I am sorry you are here.. I would ask your neurologist about getting you in the Healey trials.
We are waiting on the approval of AMX0035. It is mostly a supplement TUDCA that you don't need a prescription for and doesn't cost much . Don't expect a big difference . Some taste horrible.
We get ours from Olympia and it doesn't have a taste
 

Clearwater AL

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Laura, just a reminder. It's good that you are planning ahead trying get everything
in order. One thing you must secure is a written confirmed diagnosis by an
ALS Specialist with the diagnostic code for ALS. Maybe you have that but you
can check that out to be sure. Everything will fall in place with that.

You being in this for just a few days. Just trying to be helpful.

Best wishes.
 

lisatsmith13

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PALS
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06/2021
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AL
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Laura, so sorry to hear of your situation. I started having some slurring in March and finally had an MRI in April and was misdiagnosed by the first neurologist I saw, then saw one June 9th who diagnosed me with bulbar onset ALS. Since that time, my disease has spread to my limbs as well. I just had a port installed to begin Radicava infusions to slow down the progress. And my speech therapist working with the Gleason Team helped with voice banking. They have devices that will talk for you. I have a team from a home health agency working with me. You might want to see what is open to you for support before you decide to give up. Either way, there will be people caring about you.
 
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