exchanging experiences with bulbar onset ALS

ari3027

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May 6, 2021
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05/2021
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Thanks so much for your advice, it really helps a lot. It's so true the diagnosis has only been made a month ago but it feels like a lifetime to me. I agree he probably needs time and I try my best to respect all his wishes even if they sound irrational to me. He means the world to me and I just want to be there for him in whatever way he needs me even if it is the most difficult thing I have ever been through.

In regards to FTD, I did wonder about it too. But my dad has a long history of mental health problems so I don't want to read too much into his mental state either. He was diagnosed with a narcissistic personality disorder 30 years ago and has taken medication to stabilise his mood ever since.

A few things have definitely changed in the past months though. He struggles to find words for common objects or he forgets most names - even of close family members. I have to help him with a lot of sentences to find the right words. The other thing that's different now is that he is very aggressive towards me. He always had a tendency to be aggressive - on a daily basis really, but not towards me and also i feel like he is becoming more uncontrollable with his anger. Maybe it's because he sees me as a symbol for the diagnosis that he is trying hard to fight because I have been taking charge of all medical aspects for him.

A few months ago (before he was diagnosed) he had a complete mental breakdown, which I hadn't seen before either. We had a fight about a small topic, then he became uncontrollably aggressive and started crying uncontrollably - even he himself was surprised by it. I've never seen him cry like this, only once when his father died. I read that this may be a sign of ALS as well.

Again, I don't want to read to much into all these signs given his mental health problems - maybe it's just the added stress of his health deteriorating, this is difficult to accept for anyone - let alone for someone with a narcissistic personality disorder who needs to keep up the facade of grandiosity. But I was wondering if these things could sound like FTD to you too? If so, is there anything one can do? Is there medication for it?

thanks again!!
 

affected

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Please don't focus on FTD at this early stage.
Behavioural variant is characterised by total changes in behavioural patterns, and it doesn't normally come on suddenly, it comes on slowly and is insidious. It most often comes on before the ALS, often by a year or two.

The stress of taking in the diagnosis can be enough to cause crying, anger, and some confusion. Goodness knows I felt all those things as a CALS, let alone how a PALS feels.

There are medications that can help FTD, but honestly the diagnosis is a process that is not worth even considering at this point as he adjusts to this one. FTD is a terminal disease itself, so we don't need to increase his anxiety.

For now, try to take a day at a time. Let your father adjust, and let him take his time in making those adjustments.
Consider seeing a counsellor for yourself to help you deal with all that is happening now and coming up.
Keep talking here so we can support you, as CALS need all they can get.
 

grandtetons2

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Jan 27, 2021
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Nona, please share your experiences with bulbar onset so I can learn.
thank you,
 

JoJoBean70

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I am sadly experiencing terminal Bulbar onset ALS .. currently watching BORGEN on NETFLIX
 

Cathy H

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I also have bulbar onset. I am feeling great. My speech suffers badly. Swallowing is tricky. I get great support from a very positive and hopeful group of PALs and CALS that holds multiple Zoom meetings weekly. <donation-based site reference removed> I suggest you support your father's positive outlook. There are verified ALS cases that have reversed. And even if you don't believe he is going to get better, he needs hope to keep going, so I suggest supporting him in his pursuit of healing. Hope is a game changer!
 
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jonico

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Ari, lot's of wonderful insight here from kind PALS/CALS. You're clearly a special daughter and your father is very fortunate to have you caring for him. Wishing you peace on this journey...Jon
 

rnewton60

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Mar 1, 2021
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PALS
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11/2019
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I have Bulbar onset ALS since 11/01/19. I got the PEG early and it was the best decision I could have made. Took all the pressure off of eating and that made it easier to eat if that makes any sense to you. I still have full mobility at this point which is a little surprising to me. Feel free to ask me any questions you like.
 

lisatsmith13

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I was diagnosed with Bulbar onset ALS June 9. I am 65 yrs old and just retired when I began to have these issues. I am still able to speak but slur a lot, especially later in the day. I am anxious to be evaluated by a speech pathologist so we can keep track of any changes and work on improvements. I was told that they will also do "voice Banking" to save your voice and phrases for later when you need a machine to speak for you. Before retirement, I was a Counselor for 38 years, so I am trying to make use of my training and experiences to help me cope. I would be glad to exchange written info with your father, if he would like.
 

Robert122

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Jul 12, 2021
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PALS
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MA
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My name is bob and I have bulbar als . Iam 78 years old and have had it for two years. I am currently on a feeding tube and will gladly share with you anything I can to help you in your challenge. Bob
 

rnewton60

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PALS
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I also have Bulbar onset ALS. I was diagnosed on 11//01/2019 and I am currently 61 years old. I have lost the ability to speak and eat at this point.

1. I really fought getting the PEG but now am so glad I did. I echo others comments, it takes the pressure off of eating. I will say the doctors will tell you it is minor surgery, I found it to be very painful for minor surgery but it didn't last more that a day.
2. I lost the ability to speak after about 15 months. I STRONGLY recommend voice banking NOW. I waited too long and regret it immensely. Then eating became more and more difficult and my diet became limited. That took about 22 months. I can still take most liquids by mouth. I am seeing an increase in Fasciculations in my arm at 23 months and I am dropping both feet on occasion.
3. I am taking Riluzol and Radakava infusion. I also have Atropin drop for drooling.
4. I have an expensive computer to speak with my eyes but I don't use it because it is difficult to control. I found downloading a app called Verbally for $99 to be very useful. I also use the text function on my phone to communicate with service people and that works fine. Of course if you type out your mute, they will try to write back to you assuming you can't hear. So I learned to type I am mute, but I am not deaf!
5, I purchased an Oximeter to measure the Oxygen in my blood from Amazon for $99. And I only need supplemental oxygen at night when I sleep.
6, Voice Bank, Voice Bank, Voice Bank as soon as you can!
 

lgelb

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Just a general note that supplemental oxygen is typically neither desirable nor needed in ALS.
 
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