A Long, Slow Downhill Roll...

[Narrowminded]

Hugs Lenore,

I so understand. While it’s incredibly hard to care for both your husband and your mother at the same time, as I’m doing it too, it hurts to see them head permenantly to a home. Sending peace and strength your way

Hugs,

Sue

 

[wishmobbing]

Oh, Lenore! I hope your mom will get better and wish you more strength than an old lady could wheel around in her walker.

 

[Lkaibel]

Thank you both. Better today, one foot in front of the other...

 

[affected]

So thinking of you Lenore, I'm really sorry about your mum but at least you will know she is being cared for. It's not ideal, but sometimes we have to work hard to find the silver linings xxx

 

[affected]

Lenore I thought I would answer here as the roll call thread is becoming so huge and convoluted.

Air hunger and ALS breathing issues do not always go together - the real issue our PALS have is breathing out and so building up CO2. Air hunger is not getting enough O2.

My Chris never used a bipap and he never suffered air hunger except when he had pneumonia. Even at the end when he was actively dying he was showing more symptoms of CO2 building up than anything.

Just thought it was worth noting.

hugs

 

[wishmobbing]

Laurie, good your feeling a bit lighter. Sending you strength!

The lady that maintains the breathing equipment told me too that not everyone suffers from air hunger. You can't believe how relieved I was! I'd rather have him drowsy than panicking.
Each person is so different and in all the tragic shades of ALS there's possibly one or more symptoms you'll never suffer. If the glass is half empty you need a smaller glass.

 

[jfaidley]

Oh, Lenore-- so sorry for the mother troubles on top of everything else! I also just went through a period of 6 months of mom failing, in-and-out of the ER and hospital. She's better now after they hit upon the right diagnosis. I guess none of us has any idea of how we do what we do, or how we will manage to do even more than the impossible when called upon. But somehow we do. I have a feeling I'll look back on this someday and wonder how I ever did it. A testament to human resilience, I guess. Sometimes I find that uplifting (ok...usually!). But sometimes I secretly long to have some sort of what they used to call a "nervous breakdown" so that I could be rescued by the knights in shining armor who are probably just waiting for a more obvious distress signal to come galloping in.

Sending much support your way.

 

[affected]

jfaidley - I so agree with that feeling of um excuse me what if I just fall down and say I can't go on anymore, will the knights please come rescue me now because I'm really tired and .... but it never happened, I kept getting up each day and so no knights appeared, not even in dull armour!

 

[Narrowminded]

I’m still looking for those knights as well.

Hugs,

Sue

 

[wishmobbing]

I'm lucky to report some knights. But I can't recommend the nervous breakdown part. Rather give yourselves mini breaks and don't get nervous if everything's not perfect, even to lowered standards.
Used to wonder a lot why I caved in so early, just 3-4 month after diagnose. At the time I felt like I needed that option for later when it gets rough.
Then I thought that I'll most likely have phases like that in intervals. Ups and downs.
Right now I feel that it was probably the last well-timed slot to just not get up and cry all day because my PALS could manage with the help of those knights I call my friends and family. That option is gone. But I've already been there, done that. Breakdown? Check. What's next? Let's go!

Lenore, good to read about your husband having no bulbar or breathing involvement. Counting the losses on the limb front surely is hard enough.

 

[Lkaibel]

I have slowly accepted that there will come a day that I just lose it for a bit. I think there are probably more people then I know to come sit with Brian for an evening if I just come unglued.

I am less upset about losing our old life because I recall that life less and less. I am really grateful for those cliche little things- just hanging out watching movies, just being together.

Thanks Tillie for info on air hunger, bi-pap. I know little because I have had little reason to know. My brother ( far away in Hawaii) told me he first heard of ALS outside of a book when he was a young Respiratory Therapist in the late 1970’s and the whole department was just stunned they had patients with “that Baseball player thing”. It was mentioned in passing in school if at all. They quickly figured out the mighty Doctors often made the respiratory status of ALS patients worsewhile they were inpatients. Some things don’t change much with a rare disease.