Father In Law finally got an answer

andrewf

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Nov 18, 2021
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Loved one DX
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6/2022
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MD
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Rockville

After the long and winding road of 1 year, and really 2++ years of symptoms easing in… today we had an appointment with Kaiser Permanente's super duper neuromuscular specialist, who spent 2 hours examining my FIL, taking great care to review his prior data, clinical exams, EMGS, and lab data.

His verdict...."Motor Neuron Disease". Probably ALS. I had the opportunity to be with him in the room for a diagnosis that nobody wants to hear, but the doctor was extremely professional, thoughtful, and forthright. He was in no hurry to leave. I mean...no hurry. Wanted all our questions. Provided us some guidance. And....essentially said that given FIL's slow progress to date (possibly years of foot dragging) that he is a "slow progresser" likely.
Still, a lot to unpack and digest, and some life changes coming for my parents in law. They live about 10 miles away and may move closer, and basically our goal now is to ensure we provide him all the support and accommodation he needs to keep living his life how he can. His mind seems active and good. Doctor said nutrition and PT are important and basically said "dont stop buying green bananas." The direction is downward, the glide slope seems not super rapid. For now...?

He really wasn't interested in multiple opinions, and not in clinical studies either. He's pushing 80 and I dont blame him. Any resources available here for slow-progressers, what to maybe expect, what to think about? I'm an engineer and tinkerer and can design and build and modify whatever we may need for him. The mental part...not as much. But he was not shocked. I knew we were in the wheelhouse for this but after the last Neuro visit I thought we had moved beyond it. I feel both like "everything is the same" and "everything is different" all at once...
 

Nikki J

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There are a fair number of us here who are slow progressing one of the benefits is that you have more time to deal with new issues before they become impossible one of the problems is that it is easy to procrastinate. What I have learned is as soon as an issue presents address it. Sure he could struggle on but better to find a workable solution right away. Safety and conserving energy are paramount for him and for his care partner. Is they he and your mother ( or other elderly partner) ? Keep an extra eye on that person too. what is his current mobility? How long does it take to shower and dress? If you give an idea of how things are we might be able to be more specific.

I am sorry you had to return
 

Firefighter58

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PALS
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hello andrewf, I to am slow progression and agree with Nikki 100 percent. Is your FIL still able to eat with no problem? How about mobility, is he still able to get around ok or do he have a wheelchair? It seems like a lot of questions but we are only trying to help.
Al
 

andrewf

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Nov 18, 2021
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Loved one DX
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6/2022
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MD
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Rockville
absolutely, much appreciated! Right now he is eating fine, hands work fine (measurably week, but can do about everything). Right leg better than left. Mobility...he still walks with a walking frame or cane possibly, but his lower leg muscles are so weak that they fatigue and start shaking in somewhat short order. Is down to 128 lb, we discussed nutrition to keep body from burning muscles for energy (!).

The doctor was so good. Professional, patient, spoke the facts for what they were, what he knew, and what he didnt. It was an intriguing experience to see a very experienced medical professional at the very edge of understanding in his field. A hard-to-diagnose and impossible-to-cure condition. We as a human race have ticked off a lot of diseases in the past and doctors are used to fixing people, not disappointing them!

He will need a wheelchair, I dont know the time horizon at this point. Could be months. The AFO on his left foot seems to be a huge help. Maybe he uses two at some point? I'm an engineer, welder, tinkerer, and we can adapt just about anything he needs. Is the ALS foundation a resource of someone to talk to? We'd like to help him avoid depression.

I presume other difficult-but-necessary conversations need to be had...but when?! "Grandpa, if breathing becomes difficult, do you want artificial ventilation? Do you want it only during the day? If you die while sleeping and stop breathing, is that something you can live with?" Me personally, heck yes. But HE is the patient. I'm really learning to keep reminding myself that he is the focus. Not what we think he wants, or what we want. We talked clinical trials...he wasn't interested. I fully understand, end of issue.

I guess being in the room for his exam, helping him get undressed and dressed from his exam....I guess I"m now a "CALS" ? (caretaker for ALS?)
 

Nikki J

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Why is he losing weight if he is eating fine? Sometimes it is due to breathing issues especially at night. Or is he too tired to feed himself? Or are there issues with getting food/ meals prepared? It is really important to figure it out. Unless he is a very short man 128 sounds low.

definitely some people get two afos but he needs to consider a chair sooner than later for safety and energy conservation. We had a member who was told sit now so you won’t have to ( or something to that effect). Meaning so she could continue to transfer longer.

you are in Maryland. I actually have experience there because my sister lived there. The ALSA chapter was reasonably ok so yes call. Also call the Brigance Brigade. If he is interested in support groups ALSa did have them However he is still the same person. What engaged him before? Can he still do whatever? If not how can you substitute?

this is so new. Conversations about wishes need to happen so everyone knows and is on the same page but you all need a little time to absorb
 

wishmobbing

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You definitely can call yourself a CALS! I'm sorry to welcome you to this fine club. You're already great at this, trying to stay ahead of the game while keeping your father-in-laws autonomy in mind.
You really can't get a wheelchair too soon. If it's there, it's an offer, it's a vehicle to preserve energy for longer d instances, it's a chair to take a rest in. Some people struggle to use wheelchairs because they feel it's a sign of their loss of function. On the other hand those people never had a second thought about driving a car when they could just as well take a bike or a hike. It's just a smart and fast way to get places. So is a wheelchair.
And when it's already become a good travel companion the point when he's no longer able to get up and walk won't be as hurtful.

I think walking with fading muscles feels like running energywise, so he might just need more calories. An extra milkshake never hurt a PALS.

When he eats okay but his arms are working but weak, that could be a reason for eating less. When he eats slower because he moves his arms slower, he'll have less food down before he feels full. Fullness comes with a delay, that normally makes it so easy to overeat. Another reason to stop eating sooner are tired arms.
At one point I already thought my PALS swallowing was getting worse but it was just that feeding himself tired him to the point where he'd eat less. I started feeding him and that was quite fun because he ate like a hungry little bird.
 
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KimT

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I'm a very slow progressor, too.

I'll give you my thoughts on non-invasive ventilation. Think of it just the same as the many people who use c-paps when they sleep. It gives them a better quality of sleep so they function and feel better during the day. Did they test his breathing at his last appointment? I would think that would be one of the critical decisions and most PALS do go with a BiPap, especially at night.

The other thing that pops right out is why is he losing weight? Is it metabolic, loss of appetite, depression? Some of us make a high calorie smoothie to start our day, using good, healthy ingredients. Kate Farms makes a feeding tube formula but also makes high calorie shakes that some of us drink. There are others out there but a good Vitamix solves all the issues of what to eat in the morning, or as a snack.

Also, expending energy for breathing or using weakening muscles costs lots of calories so walking assistance and breathing assistance might help with the weight issues.

I'm very glad he has you to help him along during this time.
 

Firefighter58

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PALS
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If his legs start to shake after a short period of time then I think it is time for a wheelchair. His neurologist and his doctor are definitely someone to talk to. My daughter in law is a licensed mechanical engineer and welder but is absolutely no help with als other than morale support. No disrespect intended .you seem to talk about end of use, and death ,and that als is impossible to cure, this is not the place to talk such nonsense. Many treatments for als are available to help make life more livable and a cure may be just around the corner.
Al
 

andrewf

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Loved one DX
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6/2022
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MD
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Rockville
I'm sorry I did not mean to 'ahead of things' at all, understood. I guess what I mean about my background that I can be helpful with is designing space if they make home mods, and whatever physical accommodations he may need. I already 3D printed a bracket to hold his cane on his walker, which was rather mundane but helps him out a lot. You dont really see the barriers until you sit in a wheelchair and see where you can go...and where you cant!
But more than the physical, yet, his mental state is needing some help. Hes scared to walk stairs (as he should be) and they are getting a stairlift rental while decisions get made on where to live. But right now he is a bit of a shut-in and does nothing. We are wondering if a visit to his GP and maybe some anti-anxiety medicine may do him good. If he is going to be a long-hauler patient then hes going to have to keep busy doing something, right? Do people ever "speed up" in terms of disease progression? His doctor said in his experience people stay at the rate they are already...hmm...
 

Nikki J

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Progression is not linear. There is a saying start fast finish fast but people can and do plateau, speed up and slow down. However longer time to diagnosis correlates with slower progression. Also a neurologist who knows the historical progression and has a lot of experience can make educated guesses. My neuro after 6 months made a prediction of very slow progression and was correct.

good for you for the walker cane fix!

there is anxiety and appropriate concern. You are right stairs are a concern. Is his worry interfering with function? Also this is incredibly early from diagnosis. He is still processing I would think. It took me two weeks to pull it together and I am a relatively calm person and a genetic carrier
 

Firefighter58

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PALS
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Hi Andrew
I'm confined to a power wheelchair now but allows me to be mobile, I can go for walks out doors and enjoy that. I'm on antidepressants and they help a lot with mod swings, I also have a stair lift and a allows me access to the basement for hockey and baseball games, without the stair lift we would have had to redesign the house to allow me my enjoyment. I also have a hospital bed that makes life much easier for me and my wife ,and a feed tube that I only use for meds. and vitamins I can still eat in the normal way but very slowly. I'm happy and always looking forward to tomorrow. Good luck Andrew.
Al
 
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