Husband diagnosed today..

[Zephyr]

I hope I'm not violating any rules here, I am not thinking clearly, as my husband was just diagnosed by a specialist today. He took the news better than I did, I have been crying most of the day.

He has bulbar onset, can no longer speak that is understandable, is bothered by drooling, and has to eat very carefully.

His right foot is stiff but can walk, drive etc. I don't really know what my point is. I am feeling broken and needed to let it out.

He has had this since 2020 it remained somewhat subtle until January of 21 and has gotten progressively worse.

The Dr recommended bipap. Does it help? Does that make life easier? He doesn't want a feeding tube and wants to "check out" long before he becomes really incapacitated. I am scared and in shock.

Apologies for the rambling.

 

[rmt]

Zephyr, I'm so sorry for your husband's diagnosis. No matter how long you have been dealing with the symptoms, getting an official diagnosis is shocking and traumatic. Crying is OK. The people in this forum have been incredibly helpful for me both for practical information but more importantly, for emotional support.

My husband has bulbar onset too. His speech was totally gone in May 2020 and he got a feeding tube in May 2021. Originally he said he didn't want a feeding tube, but changed his mind when he couldn't swallow anymore and it was a feeding tube or death. He realized he still had the chance at more good times. Your husband may change his mind as he comes to terms with the diagnosis.

How are you communicating with him currently? My husband uses a white board. He also has a tablet with a text to speech app, but he prefers the "old school" way better.

 

[lgelb]

Welcome, while sorry you are here. You are in the right place, Zephyr, you never have to have a point here, and it is completely normal to spend the first day in tears. He is probably mourning in his own way.

BiPAP rests the muscles that control breathing, by sharing the work (sometimes confused with a tracheostomy+ventilator, in which the machine does all the work, a choice most PALS do not make). If his breathing is beginning to be affected, it can extend his life and make what's left more comfortable. There are many choices of masks and he can start for a few minutes at a time, at his own pace, so that when he really needs it, it will be easy to pick up for more hours daily.

Best,
Laurie

 

[Clearwater AL]

Zephyr, if you wish, you might share where his diagnosis was confirmed.
by an specialist.
It helps our very ALS knowledgeable members relate/support you in the
future.

No need for apology, glad you found the forum. You'll get some valuable
info concerning the Bipap and future eating challenges.

( Ooops, lgelb posted before me. You're getting help from the best now
concerning Bipaps. )

 

[affected]

So sorry to see you here Zephyr, the shock is huge, don't try to make all the decisions in the next days.
We can help you with information but don't try to take in too much at once.
Ask questions, and we have lots of links to information we have prepared too.
This can be a good starting place

Resource - If you've just been diagnosed - what to do now?

This diagnosis is worse than having a bucket of ice water tipped over your head. The detail of this sticky can be summarized by these steps which are not necessarily in the same order for everyone: 1. Absorb the shock 2. Find support systems 3. Tell people as appropriate 4. Put legal affairs in...

www.alsforums.com

 

[Firefighter58]

Zephyr don’t be too hard on your self, it will hopefully be a long road for you and your husband. I started off the same as him, it started with my right leg then progressed to my speech, and then my mouth. I now have feeding tube, confined to a wheelchair but I feel fine, my wife takes care of me. I can still eat in the normal way but use the feeding tube for vile tasting meds twice a day. I was depressed but with my GP prescribing the right meds I now feel great. I can no longer speak so I use an IPad with a free app called text to speak and it works fine. We felt the same as you folks at first but all is good now at least as good as can be expected with this disease.
Al

 

[Ernie]

Just to add a bit to the responses so far, my PALS and wife of 55 years was on a similar path as your husband. Formally diagnosed in the summer of 2020 she transitioned to 100% tube feeding by November 2020. Tube feeding seemed daunting at first, but quickly evolved into a routine that became merely an inconvenience and it eliminated the challenges of adequate nutrition with her increasing swallowing difficulties. We continued light RV travel and day trips to the beaches and mountains of Western Oregon to the extent her respiratory system allowed.

We were incredibly close throughout our marriage and I can say to you that during her remaining six months we fell even deeper in love. Caring for her in such an intimate way allowed me to keep despair at bay and to replace hopelessness with purpose. Please at least give consideration to the feeding tube option, but in any case, strive to make every day count.

 

[mahupi]

I am in the same situation as your husband, often thinking about what my husband is enduring.
Bulbar ALS : cannot talk anymore still walking.
I keep faith, I take no medecine other than vit C and magnesium
I really feel better when nothing worries me.
Mental health and calm are essentials
Not being able to speak was very hard at the beginning but get used to it.
How old is your husband?
stay strong, nobody knows even doctors..

 

[Jdeanda]

My dad was dx in Sept 2021, he had already showed signs of bulbar onset in May. By Sept he was already losing his speech. He also didn't want to get a feeding tube or use a bipap machine because he felt super claustrophobic. We tried so hard to talk him into it but ultimately it was his choice. By the time he agreed to get a feeding tube he had already lost a significant amount of weight and it took a month just to get him an appt to get it placed in November. It was an adjustment but it became a way of life. One thing that I remember reading was to be prepared even if you think he doesn't want to use it just look into it. My dad said no to wheelchairs also and like overnight he lost his ability to walk. it was terrifying not being prepared. Everyone's journey is different. My dad didnt want to be takin care of and he hated seeing us all in so much sadness. Unfortunately for my dad things happened rapidly and we didnt have the chance to do a bucket list. He lost his life with us by his side at home on 12/15/21. The last few days of life were not easy to see but he was at home and never once had to sit in a wheelchair. We miss him so very much he was our rock.

 

[affected]

How are you both doing @Zephyr ?

 

[Zephyr]

Thank you all for your kind responses. I have been overwhelmed for the past week. He has so many appointments! We are also trying to finish building our house.

We had been waiting for 6 months to be seen at UC Davis, we finally went to a local Neurologist, who specializes in MS and ALS.

He came very highly recommended, by others in the neurological field.
My husband and I felt immediately at ease with him.

So my husbands single fiber emg was definitive, fortunately his pulmonolgy report was better than we thought his FVC was 69% I guess that isn't too awful?

He is taking this much better than I am..unless he is lying. He goes about his normal routine, isn't crying, is laughing at funny videos. He told me he has just known he had it for the last 8 months. So perhaps he has kind of wrapped his mind around it.? I'm still sort of discombobulated, and I have a gazillion tasks all happening at once.

I am getting alot of the things he will need now, and adding things to the house such as grab bars, ramps etc. I am kind of ok, I am just going day by day. Thank you all for being so supportive. I will be back when I know more and my thoughts aren't so scattered.

 

[affected]

I was fully determined my Chris could not possibly have anything so serious as a rare, terminal disease. Chris was certain however that he did. So at diagnosis, and for the first month or so, he was much calmer than I, getting things in order, sorting out what he wanted, while I felt like a train wreck.
You can post in the CALS section even when your thoughts are scattered if it helps.
The main thing is that you get the support you need here, so do what works for you in your own time.