Dad recently diagnosed

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Mon

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Hi everyone, my dad was recently diagnosed with flail arm ALS. He has had it for approx. 2 years. He had a EMG in Feb 2020, NoV 2020 & May 2021. All 3 EMGs showed changes in arms, everywhere else is normal on EMG. The EMGs were not hugely different according to neurologist. Between the 2nd and 3rd EMG, there is approx 6months and we notice quite a bit more functional decline. Its so much worse than last fall or even last winter. Yet the EMG doesnt reflect a huge change. Neurologist said something about percentiles? Can anyone maybe explain that? Thank you.
 

lgelb

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EMGs don't track with the clinical picture like that. It would be like trying to estimate your speed in a car by counting sheep as you pass. The main thing is to stay ahead of progression by anticipating the need for equipment like a power wheelchair, patient lift, BiPAP, and hospital bed, working with his clinic to get what he needs.

The nerves do not die all at once, but when they get to a certain point, abilities can change seemingly suddenly. To give you an example, my husband went from walking miles to a block or two, literally overnight. This was a little more than a year after diagnosis.

There is no predetermined speed chart, and everyone is different. You cannot predict progression from EMGs. Now that he's been diagnosed, usually they will not be done any more because they are mostly used for diagnosis, apart from research.
 
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KareBear

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Thank you for asking this, member. My dad has actually just gone through nearly the same process. Your questions and answers here help. Especially remembering to try to stay ahead of needs.
My dad is desperately depressed. He's always been the fun, loving life of the party kinda guy. I miss that so much and would do anything to take away his pain and fear.
I appreciate being added to this group. It might be the strength my family needs to be there for my dad. God bless....
 

Mon

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Thank you for reply. I did not realize an EMG does not reflect the level of functional involvement. Yes we are trying to stay ahead, very fortunate it is currently only arms. He can still hold onto things, but the lift is declining. So lifting the fork or spoon to mouth is slowing down. Washing hair out of question. However if his arms stay low, he can carry a bag. His weakness started in shoulder vs. Hand. It continues to work its way down the arm. He is upset, as is the entire family. I can relate to your pain. My dad was an avid golfer and go go guy. We can only pray. In terms of staying ahead on progression. Our local ALS society has reached out to say not to buy anything that they may need. As needs arise, equipment wise, they loan everything. They also provide therapists in all areas and caregiving in the home to give my mom a break. Caregiving with personal care and eating, whatever the need may be. Im sorry to hear of your dad as well, it is tough. Does he have the flail arm type or other?
 

Clearwater AL

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Mon, your Dad has had three EMGs... maybe you could post the Summary/Conclusion of
his last EMG report. It may help our very ALS knowledgeable members further address
his on going issues. You've posted 53 messages... it would be helpful.

If you have... I haven't reviewed all 53 messages. :)
 

Mon

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I wish i had the EMG. I do not unfortunately. I waw just curious in regards to if EMG in one region worsens with time as functional/clinical decline grows. The member answered my question. We have the diagnosis, so there really is nothing left to question. Yes, I hope my 56 messages over the past year werent bothersome. I was looking for info and support. I still might need it, if thats okay. Even though we long suspected ALS, there is a difference when they confirm it and the real journey begins.
 

Nikki J

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Post diagnosis support is the primary reason for this board. Of course ask questions and advice relating to your dad here.
 
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Mon

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Thank you Nicki. I very much appreciate it.
 

rmt

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Mon, there are so many great people here to help support you and answer your questions. The people here are amazing. If you are helping care for him (called a CALS), there is a "CALS Roll Call Continued" thread where you can talk about whatever you want and the support is great. It is so overwhelming, but people here "get it" like nobody else does.

Robin
 

Mon

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Thank you Robin. That sounds good. I think that is what i want to do, just be able to talk, i find it quite helpful. Do u just start a new thread in that area?
 

Nikki J

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You may start a thread in CALS to discuss issues around caregiving. The roll call is an ongoing thread - more of a checkin and how things are going. A specific issue is better in a separate thread as it is more likely to be seen.

Things where you want CALS feedback specifically or where you want to discuss the stresses relating to being a CALS are best in that subforum. Things where you want feedback from the community as a whole can go in general discussion. These are often related to practical questions
 

Mon

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Thanks Nicki. I see the CALS thread. I will go there with any questions as they arise.
 

Balloon101

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Mon, thank you for all that you've done to share your dad's progression on here. I am sorry to hear about his diagnosis. My dad is going through the exact same thing, he was diagnosed last year August 2020 after weakness in his right shoulder which he had noticed January 2019 - over the course of the two years the weakness has spread across both arms.

He is now unable to do much for himself. My mum is his main carer, and now feeds, showers and brushes his teeth for him. It hasn't been easy to adjust, but we seem to have found ways to make it easier. We've had to make a few changes at home, installed a washroom so that my mum can shower him with greater ease and a toilet with a bidet (this has been a lifesaver). We found having a chair that can be raised, and adjusted to meet his comfort has also been helpful.

Unexpectedly, he has found it difficult to walk for too long (although he has not got an weakness in his legs) as the heavy weight of his arms are straining his lower back and neck muscles. Regular massaging of this area, seems to ease the strain, and having a shoulder brace makes it slightly easier.

My thoughts are with your Dad and all of you. If you have any questions, please do not hesitate to get in touch. I've found this forum to be very insightful, and thankful to everyone who has been so open about their experience and knowledge.
 

Mon

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Hi, thanks for your reply. Stories sound very familiar. All very good recommendations. We have not made many changes in home and are managing but we are taking steps now too plan for later. My mother to is helping now as the needs arise/increase. I sent you a private message with other details. I know everyones progression is different, however feel free to reach out with any questions or anything regarding our experience thus far. Over the past 2 years, I can't say i've encountered anyone who has flail arm currently, with the exception of 2 young females both under 35. I very much appreciate your post in the thread.
 
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