New to Forum

[KitMike21]

My husband was diagnosed March 28, 2016 with ALS. He has progressed with starling rapidity. It started in his right leg, with a "drop toe" affect. In just over 100 days, he is virtually wheelchair bound, he has lost around 35 pounds, and his manual dexterity is nil in his dominant hand, and about 50% function in his other hand. I'm his only caregiver and the mountain in front of us seems so insurmountable most of the time. I'm just glad I found this forum. I'm just getting acclimated, so I'll gather my thoughts/questions and ask soon!

Kit

 

[affected]

So sorry to be welcoming you to the family kit.

We will support however we can, and understand all the overwhelming feelings you are having.

May I ask why he is losing weight - is his appetite poor or is his swallowing poor, or is he maybe eating too slowly because he finds it hard to breathe and eat?

Whatever the reason, have they discussed a peg with you both?

So much so fast, I can relate, my husband was rapid progression too xx

 

[soonerwife]

So sorry to hear of your PALS diagnosis. It is a horrible thing to have to face.

We are here for you whenever you have questions or need to vent, feel free.

 

[GregK]

Sorry to welcome you here.

Important: is your hubby a veteran?

 

[Narrowminded]

Kit, welcome. While I hate to have to welcome you here, it is one of the best places you can be. The people here are amazing and someone usually has an answer to whatever the question. We all listen and we all understand.

Hugs,

Sue

 

[Lkaibel]

I am sorry for your husband's diagnosis and his fast progression. My husband had the same first symptom. You will find a lot of support here - it has been a lifesaver for me.

I feel like I spend my day with people who have normal lives and then I come here to people who understand.

 

[KitMike21]

So sorry to be welcoming you to the family kit.

We will support however we can, and understand all the overwhelming feelings you are having.

May I ask why he is losing weight - is his appetite poor or is his swallowing poor, or is he maybe eating too slowly because he finds it hard to breathe and eat?

Whatever the reason, have they discussed a peg with you both?

So much so fast, I can relate, my husband was rapid progression too xx

Mike had ulcerative colitis culminating in surgery and an ileostomy bag addition close to 20 years ago. So in late April he got sick and spent a couple of days in the hospital- ended up being a duodenal ulcer- but he lost about 10 pounds quickly then. Otherwise, it's just loss of appetite. He is 6'0" and normal weight was around 165... So he's a little under 130 now...

 

[KitMike21]

Mike had ulcerative colitis culminating in surgery and an ileostomy bag addition close to 20 years ago. So in late April he got sick and spent a couple of days in the hospital- ended up being a duodenal ulcer- but he lost about 10 pounds quickly then. Otherwise, it's just loss of appetite. He is 6'0" and normal weight was around 165... So he's a little under 130 now...

The ileostomy bag and his having to try and manipulate it constantly with limited manual dexterity seems to be an added element to ALS that is hard to fathom...

 

[affected]

Kit they can still fit a peg for him though?

Weight loss is linked to hastening progression, so keeping up high calorie intake and lots of fluids is really important.

It's going to be hard for him already having that medical history - is a dietician helping you work out a diet to keep him stable and hopefully put some weight back on?

 

[KitMike21]

Sorry to welcome you here.

Important: is your hubby a veteran?

He is not a veteran. His father was lifer in Navy! But he missed Vietnam draft- barely

 

[KitMike21]

Kit they can still fit a peg for him though?

Weight loss is linked to hastening progression, so keeping up high calorie intake and lots of fluids is really important.

It's going to be hard for him already having that medical history - is a dietician helping you work out a diet to keep him stable and hopefully put some weight back on?

What is a peg?

 

[affected]

A peg is a tube that is placed directly into the stomach through the skin.
It allows you to put nutrition and fluids into his stomach without the risk of aspirating, and without the PALS using up energy to eat.

 

[affected]

Note they can still eat and drink by mouth while safe even with a peg in place.
Placing a peg early can really be of a lot of benefit if he chooses to have one.

 

[KitMike21]

Kit they can still fit a peg for him though?

Weight loss is linked to hastening progression, so keeping up high calorie intake and lots of fluids is really important.

It's going to be hard for him already having that medical history - is a dietician helping you work out a diet to keep him stable and hopefully put some weight back on?

No dietician, but I'm trying to do as high a calorie diet as I can- Ensure's at every meal. He has already specified that he does not want a Trach or feeding tube... I can't imagine how he can go peacefully- that's terrifying to me

 

[affected]

Kit let's take one step at a time.

If he has been given full information about how a feeding tube or peg can help him (not necessarily prolong his life but increase his quality of life), and he refuses, that is OK.

I have known many PALS who refused the peg and still passed peacefully.

But you are not at end of life yet, so you need to concentrate on one day at a time even while you are having do anticipatory planning. It's a juggle for sure.

My husband Chris had a peg, but he refused feeds a lot and continued losing weight and his body was not absorbing nutrition well. He had a beautiful and peaceful passing, at home alone with me, with me being supported well by palliative care. It can be done.

For now however, there is a post on anticipatory planning at the top of the general discussion forum that may help you think about where you are at now, and what kind of services, supports and strategies you may need to be looking at next.

Do you have all your legal documents in place?

Search on the forum, read the sticky posts at the top of the general section, and ask any questions you need.

We don't sugar coat here - this is the hardest thing you will have to face. But we do all face it together with hands held tightly xx