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KatieNBoyd

Distinguished member
Joined
Oct 17, 2015
Messages
151
Reason
Lost a loved one
Diagnosis
11/2015
Country
US
State
MT
City
Boyd
Hi there, we were just given the diagnosis finally this week though it is something we already knew. The EMG just made it more definitive. My husband is 59. He has been in construction all of his life building homes, cabinets and furniture now he can't open a water bottle without help. He weighed 155 in June and is down to 135.2 today. His clothes hang on him. He becomes breathless after doing things. The twitching muscles don't seem to bother him anymore. He is keeping a diary of what he eats because he didn't understand that he wasn't eating enough in calories. We live outside of Billings Montana and are being connected with MDA. We have not yet really met with an ALS specialists. We read things on here and have gathered information from other sites as well. We are trying to plan a path so to speak. We have filed for Disability and gotten paper work in order. We are outdoor people and rifle season opens tomorrow so we are going hunting. Though hunting antelope two weeks ago exhausted him, the smile on his face when he got his buck was worth it. We are fortunate to be surrounded by wonderful friends and family. I guess I am wondering now what? I suppose we will get that when we meet with MDA. I was hoping to find others on this site that are here in MT.
 
You're right to plan as much as possible, as soon as possible. This disease can sneak up on you. Is he a veteran?

I think you'll find somebody from Montana here.
 
Katie, with that weight loss hope he is considering a peg tube now! Just eating can be so exhausting, hard to get enough calories to maintain weight . So sorry. Donna
 
Jennie and her husband are now long-distance caregivers from MT. I'm sure others will raise their hands.

Sorry to bid you welcome, Katie. Glad to hear your husband is doing what he can while he can.

On any question you might have, like right now about high-calorie nutritious foods, always remember you can use the search function in the top menu to read past posts, and of course also ask questions beyond or about what you find. You may also find the stickies helpful.

Tip #1 for calories and eating ease = smoothies and blended soups.

Best,
Laurie
 
Sorry to welcome you here Katie.

I agree, start by adding high calorie smoothies to bulk up his diet. I'm not sure if he has swallowing issues yet, but discussing the peg (feeding tube) early is a good idea even if his swallowing is good now, it will inform you of what choices you may want to make earlier than later.
 
Welcome, Katie. You will find a ton of information on this site, as well as wonderful, supportive people. Please do read the stickies. Some of our smartest people have consolidated much great information there so that you don't have to search for everything. The anticipatory planning stickie will give you a great start.

I'm so glad your husband is still enjoying himself. I recently took my huband from NC to Colorado to hunt. He didn't get his elk this year, but it was a beautiful, however taxing, trip. He is still pumped about last year's buck.

Having helpful friends and family will be a blessing on this journey--please count us among them

Becky
 
Hi Katie, I'm new to the group as well. My husband was diagnosed a few weeks ago. We have an appt in Dec with an ALS clinic. I didn't know anything when I joined, but people have very kindly pointed me in the right direction. My husband rarely spoke about his time in the Army so I blanked about him being a vet. Luckily, Atsugi pointed me to the vast information about veterans benefits and now we are waiting for Chris' application to be processed. The Stickies are immensely helpful, as is using the search feature. We haven't yet met any other ALS patients, but hopefully will make connections on Clinic Day. Sorry you are here.
 
Hi Katie,

My husband and I live between Helena and Great Falls. My mother-in-law in California was just diagnosed this week, although like you we have suspected for a while. Being new I'm not sure of the protocol for sharing email addresses. I'd be glad to support you in any way I can.

Jennie
 
wecome katie, plan as much as you can and post here often, all things als will come at you on a daily bases and you never know when things are about to change so git what you need before you need it e.g. mod bathroom,PWC , van, lifts, foods, etc. and if your guy was a vet git a PVA rep to help git things rolling. your in the right place! i too live outdoors and still hunt but from a PWC and it's great and yes i wear myself out all the time but it beats sitting around gitting crazy. love ya chally
 
Thank you all so much. We have had discussions about the idea for a feeding tube and the PEG right now he says "no way" so i will set that discussion aside for a few days and readdress it. He is not a Veteran. This site has been very helpful for both of us. Hugs to you all!
 
Katie,

Regarding the feeding tube, he will need some time to allow the idea to sink in. Truthfully, if he has begun to have trouble swallowing the feeding tube can be a tremendous help, not only for him but for you. Eating regular food becomes such a burden and the chance of choking will only get worse as the days pass. My decision to move forward with the feeding tube was two fold and mostly had to do with my wife and family.

#1 Getting the feeding tube will make it easier on my wife to help care for me, not only with getting proper nutrition but also for taking medications.

#2 As horrible as the progression of this disease is, the thought of my family having to watch me slowly starve to death and waste away to nothing is not something I am willing to put them through.

#3 As there is no cure for ALS, the only thing those of us with the disease can do is to FIGHT. If there are things that will help to have a few more weeks or months with my family, especially while I am still somewhat mobile, I am not going to turn a blind eye and just let ALS take me out.

As you will find on many posts on this forum, weight loss is very detrimental to ALS patients and seems to cause the progression to speed up. Additionally, the longer you wait to get the procedure, the more taxing the procedure will be on your body and if your breathing function drops too low, the risks only get even higher. You will find many PALS got their feeding tubes inserted even before they even needed them, some have even had them for a year or more without needing to use them on a regular basis.

Finally, the decision has to be his in the end but tell him not to completely dismiss it without reading the many success stories on this forum.

My very best to you both,

Vince
 
Thank you Vince. I am with you on the allowing time for him to let this sink in more. He currently eats and swallows very well he just is not getting enough calories (he thought that he should eat like he always has). His speech has changed (particularly when he is tired). We have noticed that the weight loss has speeded things along. As I posted we are still waiting to get together with MDA to meet with a "specialist" since the EMG with the neurologist. This site has been a God Send of information. Today and yesterday were good days. I love your #3 Thank you so much!
 
Hi Katie, My husband was diagnosed a less three months ago. He also was a cabinet maker and can no longer twist caps or do what he used to do with his hands. He has dropped to a 140 pounds and has trouble walking. It is a shock in the beginning but acceptance is now becoming reality. It sounds like you are doing great and getting prepared. Please do the things that make you both happy and don't let this disease rob the days you have together. I have been so worried about getting everything done that needs to be done that we missed moments and laughs we could have shared. We have been doing better and laughing and spending time together is our priority as well as our saving grace. You are in good hands here and the this forum has the greatest and kindest people I have ever had in my path of life.
 
Stock up on Boost Plus or equivalent. That'll add some calories.
 
"We have noticed that the weight loss has speeded things along"

We have been cautioned to maintain my husband's weight as PALSl who are heavier live longer. Your husand needs to increase his caloric intake because as he weakens every movement takes more and more energy. Just sitting and breathing burns calories in our PALS. That is one silver lining in this cloud--he can eat all the high calorie foods that most of us should avoid. It's not much, but it's something :)
 
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