My Dad (69) has very concerning symptoms.

[Nikki J]

I am sorry about your dad’s diagnosis. We often see relatives here ( even non biologic ones like spouses) who are worried about concurrent symptoms and they usually turn out ok. Let us know what happens next week.

You may post about your dad’s issues on the main forum if you want but any of your own need to stay on this thread. Thank you

 

[Sifmode]

I understand Nikki , i would never pollute the main forum with my probable newfound health anxiety , never thought i would be one of those.
I just wrote an e-mail to my friends about my dad's condition and even thought i have cried all the tears of my body (french idiom , not sure it exists in English but its self explanatory) i think i feel a bit better talking about it so i'll keep coming back here to talk about my dad and most definitely to ask a few tips about how to make him feel better.
I want to take it day by day and the hospital team advise us to go to a special center focused on MND , so i'm sure we are gonna see a lot of different doctors in the next weeks but still i would like to ask for your opinions.
His current status : Right dominant arm is almost gone , left arm is weak (cant lift above shoulder) , breathing is absolutely not a problem at rest , swallowing is ok but not undamaged(doctor tell us to be careful when eating especially liquid which seem strange but im no doctor) , legs are still strong but not undamaged( he could walk a lot if it wasnt for the breathing)
What should i be aware of ?

Thanks a lot

 

[lgelb]

Sounds like breathing is a big issue, so I would make sure he gets a portable BiPAP machine (NIV). That will keep him walking and doing more for longer.

 

[Nikki J]

Definitely sounds like bipap should be a priority but I would consider working on a power chair because 1 they take time to get and 2 he can go even further with the chair and bipap v bipap alone and 3 conserving energy is good.

Ask for a speech therapist to teach swallow techniques ( chin tuck is often suggested) and discuss textures. Ask your dad is he wants a feeding tube. It really can improve quality of life. If his breathing is deteriorating he should get it soon even if swallow isn’t bad yet

Losing arms first is hard I think because it impacts independence. While he has some use there are various things like adaptive dishes and utensils. He might want a voice to text program and you can set up a smart home with voice controls for lights and more Even if there is someone to do these things it is nice to control your own environment

There is a fairly expensive automatic feeder in the US called Obi.

An occupational therapist can be very helpful if they are als knowledgeable

I don’t know where your dad wants to draw the line and his idea may change. There are ways to improve quality of life in the meantime

 

[KimT]

Simon,

I'm so sorry to hear of your father's diagnosis. He is very fortunate to have you by his side. I know he is proud of you.

If you are offered an EMG, go ahead and take it. I think it will be negative but it could reassure you so you can focus on your father.

Please keep posting and ask any question you want on the forum. All the adaptive things can be overwhelming, but I would first focus on getting the BiPap. It will likely give your father more energy and a better quality of life.

I wish you and your family the best and hope you have time to make good memories with your father.

Kim

 

[Sifmode]

Thanks for all these tips ,

I have to go to france to take care of my first nephew for two days cause his dad has a very important professional thing to attend to and my sis is here with the youngest one.
Anyway i wont be able to see the neuro I'm afraid maybe the week after.
They are gonna take some blood from my dad on Tuesday to test for familial ALS so i guess it will serve the same purpose , it would be impossible to develop two cases of sporadic ALS in the same family at the same time.
Do you know how long it takes on average to test this , are we talking days or weeks ?
There's a tiny part of me that want to know as soon as possible but i have a terrible terrible feeling so the longest it will take the more time it will give my family some blessed ignorance before this probable full blown nightmare occures.
If the test is negative (finger crossed) i'll open a new thread in the main forum concerning my dad and this one can be closed i guess.

Simon

 

[Nikki J]

It is likely different in each country but I don’t believe it is ever days. I hear up to six weeks for a full panel these days but think that is partly due to back log. At one point single gene tests were turning around in 2-3 weeks here. Have your dad ask when he can expect results. The genetic counselor, neurologist and nurse should all have an idea. The lab tech won’t know though

 

[KimT]

My first genetic test took a month. The one I had at Mayo last year took three weeks.

 

[Sifmode]

Hello everyone ,
We are going to move my dad in a special center next week.Friends and family are coming from everywhere and we are still trying to make the best out of this situation.we have a lot more good moment than sad one and im really glad for it.
I have a few questions concerning my situation even thought im well aware nothing will replace a clinical exam by a doctor.
The weakness in my right leg is still perceived which is good , my right thigh muscles are sore after i use them and as i understand pain points away from Als.
Wouldn't it make sense that if a few muscles are slowly giving up others healthy ones would compensate and aches ?
I made the terrible mistake of testing my own reflexes , i can elicite a few in my arms just fine , my knee reflex in my left leg looks ok but in my right one its just gone, plain dead.
If i really had areflexia or hyporeflexia my leg would be dead already right ?
Hyperrelexia in one limb seems to be an early symptom but is hypo/areflexia a possibility?
LMN involvement can produce fascics and cramps which i definitely have , but hyporeflexia as well sooooo im confused to say the least.i dont know how this whole thing is going to end but let me tell you im learning quite a lot about the nervous system.
Thanks.

 

[Nikki J]

You can’t test your own reflexes. A neurologist can’t even test their own and have them valid. One neurologist I know makes people count ceiling tiles so they can’t look. There are distraction maneuvers they have patients do if they aren’t getting good responses. For someone to be areflexic from ALS they have to be REALLY weak

And no soreness isn’t an early sign

 

[Sifmode]

You rock man , always fast to respond and put people back in their place reminding them they dont know whats up and to calm down.i dont know if its any comfort to you but know that u are doing some good here.Someone who fights again human suffering is the best there is.Im here alone in my bed with my legs going insane with fascics and im feeling better.
Your are in my thoughts.

 

[Sifmode]

I m feeling down today , with my dad's death and my symptoms progressing unrelentlessly which i cant talk about beside on this forum.
My right leg is slowly dying on me , the cramps are now in my left one as well ,the fascics have progressed in my trunk recently.I might be going nuts but im now 100% conviced i have ALS and wish the genetic testing from my dad will never come back so it can buy some time to my family.I think i wont be able to hide my right leg getting weaker within 2 months.I intend to make the most of it even if its hard mentally.
Have a good day.

 

[Nikki J]

Have you seen a doctor?

 

[Sifmode]

Not yet , i cant rly disappear, the whole family is here.I might be able to see my dad's neurologist later this week but to tell you the truth i dont want to.My dad's genetic test will act as a diagnostic tool.I need a few weeks to wrap my head around this and find a way to annonce this news.My dad funeral is friday , my family needs time.

 

[Nikki J]

No. It won’t. If it is negative will you suddenly be better? And if it is positive it doesn’t say anything about you. If YOU were positive even it doesn’t diagnose you. See my recent comment on this thread Familia ALS and genetic testing

A doctor visit is the ONLY way you can get answers that mean anything