Pls?

[Artista]

Is it the longer one is improving in affected limbs the less likely pls/als? Can plateaus last years?*


I had a thread for my dad but it's closed now.*


He doesn't want to go for more testing since nmd doesn't have treatment. He got the possible pls and that was enough. I'm the one digging. He's doing PT 2 x a week and gym sat and sun every week. Bro goes with him. Sauna and jaccuzi help his left arm/hand with range of motion. Bro says his strength is better than 2 mo. Bro won't entertain pls and keeps dad going, to not slow down unless he's getting tired. So unless something else comes up, no more doc visits for this.*


I guess I'm trying to find a shred of hope thatmaybe he's a lucky one and it's not mnd but I read the other mimics and doesn't fit. He's 79, still works ft at 79. PT has said it would be miracle if he gets noticeably better. Pissed bro off because his balance is better, can walk slowly without cane but uses it for safety. The couple times he almost fell was because he didn't keep hydrated.*


He does a lot pretty independently with bro going every weekend to make it easier on him with chores.*


I have no one to bounce thoughts on.*



My original tread with his story is here..

Als/pls?

 

[Artista]

Original thread

https://www.alsforums.com/forum/do-i-have-als-als/41802-pls-als.html

 

[Artista]

Here's what bro says now..

"He can stand even, solid. If he walks slow it's without any limp. If he walks a little faster, he has a limp, but less than before. It's going to take time, no fast fix. Cane definitely needed for safety, but he can walk without it....

It's remarkable if you think about it. Just 4 months ago he was stuck in a recliner all day in pain from the bad fall on his back.. Now he's doing pretty good considering... Unfortunately we didn't know his arm had been injured badly. And the stupid emergency doctor didn't do a full body check. He just took an xray of his back. He should have at the very least been told to see a physical therapist right away.

I really hate the health care system. I see how every one of these doctors, even Stephanie too, look at dad as an old man, and assume he is almost at the end, why bother go out of their way...pisses me off... anyway, bottom line is only the loved ones care. And we have to do all the digging and figuring out how to help because no one else will.

I have a friend who had a kid who was very ill. He went to so many doctors and none took the time to really find a solution. So he did Internet research and found medicine that could help. He went back to the doctor, told him write a prescription for that medication...and his kid got better!.... so...

Dad's left hand grip is strong, but his shoulder is frozen, that's why he can't lift it more than half way. He has the strength, but it gets stuck. It will take lots of physical therapy, and mostly exercise at home and gym, and heat therapy like jacuzzi and sauna. I wish I knew all this before he fell. Live and learn as they say. We're definitely learning..."

Thanks for reading.

 

[lgelb]

Improvement in walking argues against both ALS and PLS, but against ALS more. And "plateaus" of longer duration would be more likely in PLS as well.

Anyway, it's his life, I don't blame him for not wanting to spend it at clinics, and he has your bro as backup should things worsen. He's 79, so it's true that even if he has MND, it may not be his cause of death. So I would spend time with him when you can, keep an eye out, but honestly, the "PLS vs. ALS vs. a rare mimic" question will reveal itself in due time.

Best,
Laurie

 

[Artista]

Thanks laurie. I'm disabled so don't travel. He's 9 hours away and I can't fly.

When he gets down what do I say? Tonight his goal is to ditch the cane. I didn't say anything even though safety wise not good idea. He's determined to beat this and none of us want to say anything possibly negative to him. So hard.

 

[lgelb]

Sorry to hear that you can't travel, but "seeing" includes video chat!

When he gets down, tell him his future's not written, but if he wants to see more of it, he should use a cane if it may keep him from falling. Falls roll back improvements, can increase disability dramatically, and are very much to be avoided. So I would say to him, if you want freedom and independence, the cane is your friend and falls are the enemy. We could have a whole thread on everyone here whose progression to immobility was accelerated by falls.

You don't have to be negative to make that point, and you are welcome to say that everyone here in a seemingly similar boat agrees...

 

[Artista]

So when he's feeling down just say keep doing what you're doing? He's not a quitter but at times I worry it will get to him. Bro is in denial other than it's nerve issues. All his sensation is intact with no numbness, tingling or pain except when is big toe cramps up. What do I say? I just keep quiet when he tells me again how his hand is pretty useless. Just say hang in there?

 

[Artista]

More from bro..

Hey Sis, I know it's impossible for you to see because you're not here, regarding Dad's progress. The day that he got dizzy in the garage was the day he didn't drink water throughout the day. It was the hottest day of the year. Dad knows this is the reason it happened too. His body requires more water than before. When he's hydrated, no problems. When he forgets, then there's problems. Since that day, he keeps his water bottle full at work and sips on it throughout the day. His balance is getting closer to what it was before falling. He can lift more weights at the gym. He limps much less now than before. Cane is becoming more for safety than necessity. His muscles are stronger now than 2 months ago, especially his leg. If he could work out every day at the gym, he would improve much faster. But he works, so he doesn't have the time. I wish he could take 2 months off to work out every day. That's what he needs. But it is what it is, so progress is slower. As for necklace, I asked him to put it in garage but he does not want to. You can insist if you like. I already have enough on my plate. Him working out at the gym and simple exercises at home is what's benefitting him most. The more he does, the better/faster he improves. All these doctors can kiss my ass. Not one of them suggested that physical therapy immediately after his fall was crucial for preventing atrophy. I had to learn this on my own way after the fact by doing my own research. Past is past, nothing we can do. Moving forward. I see him doing way better than 2 months ago. And his energy level is good. 3 hours of gym today, then grocery shopping, then dinner at TGIF. And he did more than okay!

 

[lgelb]

So I don't understand. Your dad decided not to go to UCI for the 2nd opinion? Was your bro a part of this decision? I would encourage going for a second opinion to see if he has something treatable. We always advise that, not just in this case.

Your brother sounds pretty fatalistic, but you could talk directly with your dad and explain that until everything treatable has been ruled out, he owes it to himself and it will improve his peace of mind either way, to know. PT alone may be helping, but without a diagnosis it's kind of shooting in the dark.

 

[Artista]

After a heated convo in June about 2nd opinion with a nmd doc, I let it go. He had an appt for 7/5 and cancelled. Too much for him to deal. If he regresses then I'll insist but he's a half glass empty guy all his life so waiting and seeing is it.

I tread on egg shells when I talk to him because he's looking for what is wrong all the time vs those who look more at what's right, in all aspects of his life. So I don't want to bring him down. We had the talk about dx being better so he knows.

 

[Artista]

Forgot to say, neither one of us have much influence. Bro can say what he thinks but doesn't listen to either one of us much. He's pretty set and stubborn

 

[Artista]

Dad is pretty set and stubborn to both of us.

 

[Artista]

Bro doesn't entertain the possibility of pls. I've given him cases from the boards but he is focusing on dad making progress, which he slowly is. I sent him 1 final explanation to his latest response.

I'm starting to agree with Laurie that it could be worse on his naturally negative depressive psyche to try and drag him to a nmd clinic. What's the point? He doesn't need meds. He's working full time at a job he loves as an engineer, doing PT twice a week and gym on weekends. If it progresses or new areas show up then if dad is wanting a diagnosis then he'll go to a nmd specialist. But for now after thinking about it, I don't see the need. What's the point right now. We all have pls in back of our minds with only me trying to figure the best things he should do, but it's a wait and see. So we have the don't fall and healthy foods and lifestyle down.*

 

[Artista]

Bros latest message followed by my last attempt to educate. I'm done with it. I pray the improvements he's making points away from nmd.


"Hey Sis, hope you are doing okay. Thanks for the tip on the potassium magnesium. You know he likes vitamins. Dad's walking much better. The more he exercises his muscles the better. As for possible disease, that's bogus crap. A disease doesn't stay only in the left shoulder and left elbow and partially in the left leg. His left hand grip is strong. He can lift left leg, he used to have to pick it up to get in the car, it's about 80% effective. I know it's hard for you because you're not here to see. So trust me and try not to worry. He is improving. Especially the walking. His balance is way better than 2 months ago. Cane needed for safety, I agree... take care Sis, much love."


My last ditch effort to educate.



"The thing is pls is very slow progressing. Very slow. I'm reading people's stories of how and when it started. It takes a couple or more *years after the weakness, troubles are noticed. They all were very active before which is being researched as a possible cause in some people. It set off the chain esp when they fell. It always made it worse. I remember pop breaking his left wrist twice. That can set things in motion.*

Pls starts between 40 to 60 average and can take decades in some for a symptom to show. One guy was diagnosed at 98. Lucky i guess. Yes it's rare but it's not 0. And it's not as rare as reported because so many don't go through all the tests, like pop.


They are all in the gym, swimming, and many are still able to walk ok. One guy went 8 years of doing pretty well to sudden decline. There are many stories of this. Pop has to make significant improvement for a couple years to rule it out, not just small. Pops situation does not rule it out. I'm digging more than i did for myself and asking questions desperate to find someone say not likely.


All diseases are slow. They begin long before any symptom shows. Cancer doesn't show up quick. It takes years before something shows up. Same with pls and all motor neuron diseases and Alzheimer's which people aren't firmly diagnosed until several years in. Stage 1 is you're normal functioning. Stage 4 a few years la8ter Alzheimer's is a probable diagnosis.*


If dad worsens or new area pops up, he must go to the neuromuscular specialist.


What you describe is not uncommon to very slow pls. Of course i dont tell dad but we have to be prepared. As they say hope for the best, prepare for the worst.


Golden Rules


#1 don't fall!!

#2 don't hang around sick people, at 1st sign of respiratory issue go to doc

#3 conserve energy, rest, never push it, try to relax

#4 stay warm but not hot

#5 nutrition.. protein, veggies like bell peppers (red has highest vit C), spinach for iron and energy, beets...basically a nice mix of the best veggies. Dark greens like kale is superfood. People sautee it with other veggies and chicken.*


I think pop should get his juicer going. You don't get enough vitamins and nutrients from daily intake and vitamin pills are not the best. On the internet you can find recipes that are fruit and veggie to juice. Make enough for a week, store in the fridge. You can also freeze it. Take it out before bed and drink in the am. Breakfast is the most important meal. He gets fully loaded in the ams it'll help with his fatigue at work. Nothing beats fresh produce and people do better overall if they drink fresh juice, smoothie. Very important for pop, not pills."

Thanks for reading. Don't know what else to do or say.

 

[Artista]

Bros report today on pop..

His fingers grip pretty well when squeezing. But it's hard to angle the arm to type because his shoulder is frozen and his elbow too. But now I can feel his arm is getting less stiff. Which means his rang of motion is coming back. He can rest his hand easily on his knee which he struggled to before. He can do exercises at the gym that he couldn't do before. His balance is almost solid as a rock! Even after all the exercising he can keep his balance. A month ago he'd be exhausted and therefore a little wobbly. Today he did a lot of arm exercises and then hit the sauna and jacuzzi. And now at home he took a shower...and for the first time he got out all on his own! He has been getting out on his own for a while, but this was the first time he did not call me to watch him get out. His confidence is going up. And I am walking with him more so he can lose that limp. His limp is a lot less, and I mean a hell of a lot less, than a month ago! And seeing other guys at the gym of all ages and health conditions is a great thing. Young guys talking to him, encouraging him, and impressed with his efforts. Older guys in similar or worse conditions talk and share their stories. Believe me, his energy is beyond amazing. He worked his ass off yesterday and today. And now he's dressed and ready to go for Mexican food. �� hope this good news helps your spirits Sis, take care, much love.