Father recently diagnosed

My father was recently diagnosed with ALS, its onset is in the bulbar region, we are currently waiting for his first Doctor's appt, which seems to be taking forever. I am just looking to someone to give me advice about how quickly the disease will progress etc...really just need some information from someone has gone through...thank-you


Anonymous's picture

Hi Carol

I am so sorry to hear about your father. How old is he?

My mom is 73 and was diagnosed with ALS in August of 2016. I am a RN and she is as well. I felt completely helpless and devastated when it was confirmed. Each day is a process and brings different emotions. My mother has been so positive and has tried to maintain so much independence. I am so proud of how she has chosen to deal with her illness. She is completely selfless and is a true inspiration to us all.

Every case is different but my mother is now in a wheelchair and cannot stand for longer than 45 seconds to transfer to the commode or into the car for doctor visits. She has PLS (primary onset). Her voice is starting to change a bit and her hands and arms are weakening. Most of her muscle mass is gone she is now starting to not get out of bed much recently as it takes far too much energy.

I will pray for your father and for your family. I never thought I would personally experience something so painful and devastating. RN's try to fix everything for everyone, and this is something I just cannot fix. So I make the most of everyday with her and I hope you can do the same. Be kind to yourself as you go through this process and know that you are not alone.


Anonymous's picture

Hi Carol,

Maybe cab this give you some info.


Keep faith.

Kind regards


Anonymous's picture

Dear Carol and Celina,
My 84 year old mother was diagnosed in May, 2016 with bulbar onset ALS. She started with some slurring of speech a year prior to the diagnosis. After eliminating everything else, we were left with ALS.

At this point, she can no longer say any words, can only make some grunting noises. We are so fortunate that she can write. I found some write on/wipe off boards and she writes us notes. We are using an iPad with Facetime for her to stay in touch with family. She can nod and she holds up the board with her response for the other person to see. It has been a huge help. Unfortunately, she never learned to type so most apps have not been helpful.

Mom uses a Trilogy non-invasive ventilator at night and for a couple hours during the day. It really helps to give her strength. Mom got a feeding tube the week of Thanksgiving. I am currently giving her water and meds through it. She can still swallow most foods; soft foods, no rice or beans. Swallowing is slowly getting worse.

Mom has been using a walker for the past 3 months. It helps her to steady herself. She is very independent and actually still does a lot of the care for my dad who has Alzheimer's. We cook all the meals but she can microwave the left overs for the two of them. They are not quite ready for us to be there full time...but it's coming.

We are lucky to be near a large teaching hospital that has an ALS clinic. We go there every 3 months for "clinic". It is an all day affair with PT, OT, RT, nutritionist, neurologist, gastroenterologist, and social workers. They are really good about offering devices and advice along the way.

At first, I was upset that the appointments were so far apart, but, now it seems about right. Mom seems to plateau between visits--however, I think it may be that I don't notice the gradual changes since I am with her so much. I do sometimes find myself surprised at the decline they note that I didn't even notice!

This disease is horrific, but, I almost think it has brought some quality to my mom's life that wasn't there before. It has made us much closer and has deepened our faith. We try to "take one day at a time" which sometimes seems like such a cliche, but, with this disease, it is the only way to function. Looking too far ahead can make me feel so overwhelmed.

Please write and update your journeys. It helps to know that others do understand...and helps to know what to expect and how others deal with the twists and turns.

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