Any suggestions.....

[Chumpy]

So my husband has PBP..... Diagnosed last month, started showing symptoms september 2013. Speech was the first noticeable symptom or sign.

Since his diagnoses November 3rd, his depression has gotten worse. His drinking (alcohol) increased. He spends a lot of time feeling wore out. He was feeling this way previous to diagnoses. He feels weak all of the time, which brings him down even more. About 3 weeks after his diagnoses, he was laying in bed watching sports ( like usual). He started feeling like he couldn't catch his breath. Now he is a mans man...one who generally will NOT go to the hospital. He came to me and asked me to take him. Now I was shocked at the lack of knowledge at the hospital about ALS. At first they thought heart attack, egg was normal. He began to throw up. On top of not being able to catch your breath, now throwing up....OMG!
His oxygen levels were fine the doctors said, his respirations were fast though? He even got real pale and started having cold sweats. They gave him Ativan by IV, and he started breathing normal and felt sooooo much better. They kept him in over night for observation, as well as on a heart monitor. They sent him home with panic attack as the cause. As well as a couple more prescriptions. Lorazapam & Xanax ...... I was reading how ALS causes difficulty with chest muscles, causing difficulty with breathing. But not the lungs persay. So it's not the same as if there were a lung problem, it's a muscle problem with the chest was what I understood. So my bright idea was, get him a sleep study, get him on a Bipap at night, maybe he will sleep better and be more rested for the day. As he really never sleeps for more then 3 hours at a time. Well he did good on the sleep study, so no Bipap? I don't understand...... I am so confused! His speech is fair. At the beginning of a day decent, then as the day goes on harder to understand. He explains it as his tongue gets tired. He has muscle atrophy more on his right hand and arm, starting to be visually noticeable on his left as well as his upper body shrinking. Almost like an age progression. Difference between a 46 year old turning to a 70 year old in the last year.
I guess this brings me to my any suggestions..... Is there anything I can do to help him. Is there anything that can help him sleep better and feel more energetic? Any thing any one any where......? I have faith in God that his will be done! But I also know God brought us together for a reason as well as to this forum. So God Bless you all and all that you do! May your life be filled with love and laughter!

 

[gooseberry]

You need to find a.neurologist that specializes in neuromuscular disorders. Then go there. At the als cli ic, they address my husbands respiratory needs. Most healthcare professionals know.very little.about als, you will have to comstantly educate them.

 

[LizC99]

Yes finding a ALS Specialist is absolutely the first thing to do. They will prescribe the necessary meds to help your husband as well as the support that he needs. My symptoms started the same as your husband with my speech. At this point I have lost my ability to speak, I have a PEG tube with many other symptoms, but I'm still able to walk and drive so I try to get out everyday. so try to find that specialist ASAP.

 

[Jeffreyp]

Needs to have lung function tested--- have forced vital capacity checked. very simple test--he just blows out into hand held device. If lung function down, then he needs bipap regardless of what sleep study shows.

 

[MaxEidswick]

>Is there anything I can do to help him

if you caan, go to an ALS clinic, esp. the pulmo or call mda/alsa for referrals and advice ....

 

[Janie H]

The meds should help, I have had symptoms for almost two years, als does not mean that you are dying right this minute, I hope to be here this time next year.

Janie

 

[smoochiegal]

Chumpy,
I feel as though I could have written your post. My husband is the same. Depressed, drinking more, went from being a guys guy, always outside to only his lazy boy. He too went from a strong 45 year old guy to a frail looking man. So heart breaking. We have been together for 6 years but got married after his diagnosis. I too believe that God is in control, but I have to admit that there are days that I wonder 'why him?' 'why us?'
He is also beginning to have trouble catching his breath. We are getting a referral to a respirologist to do a lung function and hopefully get him a bipap machine. Our ALS regional manager also suggested getting a cough assist machine to help him. We are just in the beginning stages of this process.
I don't have any advice, per se, but felt such a strong connection to your post that I had to comment.
Hugs from far away,
Cheryl

 

[slopokahontas]

I agree with finding an ALS Specialist! Before my diagnosis, i spent many trips to the ER leaving me feeling crazy! I had a problem I called my "can't complete a yawn out breath" problem. Because I didn't know it was a symptom of ALS, I thought I was dying and became overly anxious about it. All the tests were run and xanax would be prescribed! I was tired and frustrated! Now that I know what it is, I remain calm and know if I remain calm through it, I will breath better. Also, gravity is not our friend! Sitting up slightly, helps me!