Confirmed diagnosis

[Buglaw]

Hi guys,

I got confirmed by a second and third opinion as having ALS. The third neuro agreed my emg doesn’t meet als criteria, but like the others doesn’t think there is any point in doing another one. I have widespread upper motor neuron involvement and I am showing a few clinical signs of lower motor neuron involvement. He said if it’s stays mostly upper for the next couple of years, there is a Chance for very slow progression, but he didn’t seem optimistic.

Anyways, I had a couple of questions for everyone. Does Nuedexta cause muscle stiffness and fatigue? Since I started it, both my arms and legs have started to feel stiff and get tired with use. I wouldn’t say they are clinically weak, just more awkward and clumsy and fatiguable. I really appreciate the emotional liability effects of Nuedexta, so I’m not going to stop taking it, but I’m not sure if my ALS symptoms jumped to my whole body and increased in like 2 days or if it is a side effect of nuedexta.

Does anyone with impactful dysarthria continue working, and if so, how do you do it. My job is very very committed to trying to make it work if I want to stay on, but I’m a corporate lawyer, so it seems a bit unrealistic when I can’t be on the phone arguing points all day. They said they are going to research how they can support me, but wanted to see if others have made it work. I have long term disability insurance, and my wife is likely going to make partner at a large law firm this year, so I don’t HAVE to work, but I’m concerned that if this does progress slowly, I’m going to go out of my mind if I don’t have stuff to do all day.

What’s the thoughts on using speech assistance devices before you absolutely have to. I’m capable of making myself understood. I had a 4 hour clinic visit yesterday, I talked to people the whole time, I don’t think anyone asked me to repeat myself (though it does happen once every day or so), but speaking just takes so much effort. I’m thinking about using an app just to supplement my speech to try and conserve some energy.

 

[Nikki J]

Sorry to hear.

nuedexta can cause fatigue. Maybe stiffness not sure

I am glad you have resources. They do make things a little easier

if you can’t find a work around for your current job you might consider using your skills somewhere in the ALS world. There are various foundations and other organizations. Someone with your background and slow progression could probably do a lot of good with advocacy. Imamals was founded by two lawyers Brian Wallach is a PALS He and his wife started it with a few other PALS and CALS and it has grown You may want to work in an existing organization or not. You can take your time and research to see what fits with your interest and philosophy. Of course you may have no interest but there are certainly many things you could do if you choose to leave your current work Keeping yourself engaged and active is extra important forthose with slow progression

 

[lgelb]

I see no reason why you couldn't keep working as long as you want, in adapted form. You can keyboard your arguments with your hands as long as they last, then move to a head mouse, tongue mouse, eye gaze, twitch switch, etc. You can type into a text or chat window for real-time conversation with as many people as needed. Your words can be read in written form, or as you say, you can use an app to speak your words as you type them. There are many types of virtual keyboards and apps where you can set up macros to conserve your energy, entering commonly used phrases or paragraphs in your legal arguments. As you may already have, you could have an indexed database of your firm's previous motions, pleadings, etc. that you could draw on more easily.

If volume is an issue and you will be speaking for a while, there are voice amplifiers. As you know, in virtual conferences, you can hit a single key for many actions, such as thumbs up, vote no, ask the speaker to slow down, etc.

You could also review briefs drafted on your behalf, train/mentor other attorneys, evaluate hearing, deposition, or trial recordings, etc. depending on what your specialty is. If any kind of offsite inspection or audits are needed, you can participate via video.

These are just some top of mind thoughts. No doubt in Chicago, there are AT professionals who can suggest accommodations that can support you given the infrastructure of your firm.

Best,
Laurie

 

[Buglaw]

Thanks, both. Those are each excellent points. I appreciate your perspective.

 

[Boora65]

Hi, sorry to hear about your diagnosis. I also had some of the same issues you have and have gone through the staying at work issue. Firstly, I’ve been taking Nuedexta for about 5-6 years and I don’t think it has caused the issues you mention. I think it had been great with helping control saliva for me as whenever I run out of tablets I see a significant lift in drooling. My ALS also seems similar to yours as I had clear EMG’s for several years but some clinical lower motor neurone signs, but mostly upper motor neurone signs. I first had bulbar symptoms in March 2015. My employer (a large global investment bank) was also initially very supportive of my want to continue working. At the time my daughters where 9 and 6 and I wanted to keep things as normal as possible for them. Dad goes to work, we go to school etc etc. Initially I continued my existing role, passing over the talking to one of my junior colleagues when necessary, but also I increased my communication to clients through email. In 2018 I changed my role to more of a mentor to junior staff and communicated mainly through email but also a phone app (great free ones are text to speech and Speak4Me). Eventually in 2021 I agreed to finish up with work after some urging from my employer. At this point I can’t speak, but despite some persistent twitches, cramps and soreness in my limbs for several years, I still have the use of everything else, although I get tired easier, have lost some weight and my strength isn’t what it used to be. At this point I consider myself one of the lucky ones as apart from speaking, I can do pretty much what I did before. Hoping you may also have the same slow progression.

 

[Buglaw]

Thanks,

I’m also hoping for slow progression, but I have some pretty big doubts I’ll end up like you. I think things are spreading faster than that, but we’ll see.

On another topic, is there a list on here of what people need in bathrooms with ALS? We need to buy another house as my wife is four months pregnant and our current location wouldn’t work (schools suck for kids, not enough room for two kids, an als patient, caregivers, child support help, etc.). I know bathroom/bedroom on the first floor, doors wide enough for a chair, ramps at some point, wheel-in shower, handicap accessible toilet with room, sink with wheelchair clearance. Anything else?

 

[Tomswife]

Buglaw. Congratulations on your expected baby! New life. New love. You have a lot to plan for. With regard to planning your new home, you could seek advice from an OT with ALS knowledge. If you have an ALS ASSOCIATION chapter they may be able to help. In the NY Chapter we have someone who is very knowledgeable about spacial planning, logistics, etc. Blessings to you.

 

[MJT]

Hi Buglaw, I'm sorry that you must take on a move in addition to everything else. I'd consult with an ADA contractor to get ideas. This may not be ideal for your family, but we happened to downsize to a new, modern condo two months before my husband's diagnosis. It has a zero-entry shower, elevator, wide halls, etc. That could be an option to save you from enduring a renovation.

My hope for you and your family will be a very slow progression, a new home in the best school district, and a healthy baby.

 

[Buglaw]

Thanks, all. Those are both good suggestions! I’m at northwestern so, Les Turner provided me with some contractors. We will reach out.