exchanging experiences with bulbar onset ALS

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ari3027

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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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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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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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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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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.
 

ari3027

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Thanks so much for your advice!

My dad is getting the PEG tomorrow, which was a very difficult decision for him. But eating has become an act of suffering now and he recently had aspiration pneumonia so he really can't wait any longer.

Do you have any advice around the PEG? Anything I need to consider in terms of the after care? How long did it take for you to recover from the surgery? Will it be uncomfortable after recovery? Did you have any side effects from 'artificial' food?

My father has also been diagnosed with Alzheimers, has anybody heard of such a combination before - ALS AND Alzheimers?

Mucus in the airways has become a big issue for my dad now. We have been told that there is a cough assist device that could help. We would like to get it in a few weeks. Do you have any experiences with this? Any advice on how to manage mucus in airways?

Thank you <3
 

Nikki J

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My sister’s experience and I have also heard from some other PALS is that it was sore for a week which was longer than the hospital said and they also said it “ shouldn’t” hurt as much as it did. Not everyone experiences this but just to be aware My sister was made to feel like a complainer which she was not

I think generally the tube is easy to learn and manage It is infinitely better for all concerned than the choking and horror you have now.

if he is malnourished it may take a while to get used to “ eating” again . My sister required small amounts slowly and a special easily digested formula but she was very very very emaciated. Still it can take time to adjust to any formula. Be aware that PALS are usually given a corn syrup based one. There are a few real food formulas. Sometimes insurance requires you to try the corn syrup first. Whatever he gets know there are choices if the first doesn’t fit.
I am passionate about feeding tubes. I have PTSD from watching my sister struggle before her tube and also my mother who did not want one.

often ALS has a comorbidity of Frontal temporal dementia ( FTD) but I trust the Alzheimers was confirmed as being a correct diagnosis? I have heard of cases of the AD/ALS combination thoughI think it is believed to be a truly horrible coincidence. I am sorry
 

rmt

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My husband got a feeding tube in May and it has really improved his quality of life (and thus mine too). My husband is very stoic and he also had more pain than they said he would. He was sore for about a week. The first few days were the worst because he would have cramping if he had too much in a feeding. After a week he was feeling a lot better and we started to get the hang of how much volume for each feeding was best.

My husband gets his care at the VA, so they provide formula for him. Before he got the tube, I bought the healthier formulas on Amazon and got a blender and was ready to make whatever my husband wanted in case the VA stuff didn't agree with him. Turns out, he does just fine with the stuff the VA provides. Plus, it is free, and the man has never passed up a sale rack! I told him we could push to get the healthier formula or buy it online ourselves, but he is happy with what they send, so we will use that until he wants to do something different.

One thing I will mention is that my husband was depressed for a few months after finally getting the tube. He tried so hard to not have to get it, but in the end, it was either get the tube or starve to death. I'm thankful he chose the tube as I wasn't sure that he would. And looking back, the months where he was trying to eat and choking all the time were the hardest and most stressful months of our journey. So I was thrilled he had the tube and the choking stopped, but he was so sad that he had to have the tube. I think he felt like he "failed" somehow because he couldn't eat anymore. Not sure if your dad will have the same feelings, but I was surprised at how sad my husband was. He seems to have come to terms with things and his mood has improved a lot (with time and the help of a natural antidepressant).

I'm so sorry about the Alzheimer's on top of ALS. That seems so unfair!

I don't know anything about cough assist, but I'm sure others will chime in about that.
 

GXTrex

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@rmt

What natural antidepressant did your husband use?
 
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