NeedCourage

Yesterday I was having a particularly bad day, woke up in the night with chills and pain in all of my joints, took something for pain and back to bed. I hurt for most of the day, and I was having a hard time getting Tim square in his sling, so I said out loud. Jesus, you have given me strength, I have muscle like a man, but could you please stop my joints from hurting, and give me some energy to go with that strength. I heard my husband chuckle and say amen. Today is a good day, although I have a sore neck today, but managed to have nap and wake up feeling better. My step-son is responding to the talking to we gave him yesterday, and is being positive and very helpful. Just keep talking with us on the forum, and I will keep praying, adding you to the list.

Paulette

Hi Nancy, Thank you for the very kind words. Its been a real struggle for me and my husband. My husband was in denial that anything was wrong. It wasnt until he had the shortness of breath that he went to the doctor. By then he had head drop/neck weakness . I work in the medical field and had done quite a bit of research into his symptons and this is what I kept coming back to but didnt want to believe it.

You have so many dreams for your future, so many plans. In an instance they are all taken away. Somedays its so hard. Mostly I try to stay in the present and do what I can to make our time as good as it can be. We have a son who will be 12 this week. So, we try to live in the present and do as we can as a family. Its a lot slower pace but just as fulfilling. I am grateful for anytime we have together. My husband is mobile, talking, relatively stable so we are very thankful.

Stephanie

I am not very familiar with the American medical system, and that is complicated by the fact that every State seems to be different. I would say that your husbands lower motor neurons are failing around his diagram so it is weakening. My husbands sneeze and cough was one of the early warning signs, and I would say that it was about 1 ½ years before he need day time respiratory support. They are just now using non-invasive ( not with a tracheostomy, but with face mask or mouth piece) ventilation in Canada, so we got his Trilogy in the US. My husband is a vet so the VA purchased it for him.
I think your priority right now is to get a neurologist that will follow him regularly, if not talk to your regular physician. You will be in my prayers.

Paulette

Hi Nancy;
<Even tho' first neuro (who IS the director of an ALS Clinic in Pittsburgh used the words Lou G Disease...>
If you & your husband saw the director of an ALS Clinic, why would you not see him again? Your own physician can order a pulmonary function test, which I suggest your husband have done.
It is very confusing when your PALS does not have a typical ALS, but really with the symptoms that he has I would think that you should act like he does have it. Because my husband moved to Canada from the US after his diagnosis, we started all over with the doctors here hoping that we might get a different answer, but still got the ALS diagnosis. I am not sure why they were all so sure even though no one has been able to show me any upper motor neuron disfunction.

I got both of them - u r doing it just fine : )

Glad to see that you are back on. I have been concerned about you as well. I am going to see my dad in Dallas on June 9th for about a week. I am kind of nervous about what I'm going to see. I haven't seen him since the first of the year since he lives so far away. I talked to him usually twice a day. But, I think in ways I have been in denial since I haven't seen him face to face for awhile. Praying for you. Kim

Thanks to a caring CALS I came back here - I can't do this alone.

My husband and I have always had the attitude to make the most of day that God gives us because only He knows when our last day will be. We are still doing our normal routines, with adjustments for my lessened abilities. He, it turns out, is a much better cook than I am. So he does most of that. Cutting, slicing, and carrying hot pans have gotten too dangerous for me. I can still do laundry, with help with the jeans. He's six foot tall to my five feet. We have a lady that cleans the house. And my MDA Lotsa Hands team is growing bigger. People on the team help me with groceries, and running errands. I still drive myself to work, but don't like driving in town. I also need help loading my walker into the car.

If you haven't gone to the MDA website and learned about the Lotsa hands team, please do. It's a way to set up a group of people that want to help you and your family as this disease progresses.

>Max! Need your help PLEEZE on make sentence game. Really screwed up : (

Dear Nancy,
O.K. I read your posts except on the "make a sentence" thread, didn't want to wade thru 18 or so pages to find it.
First, I didn't see any answer to is your husband a vet? If he is, contact me immediately. [email protected].
Second, first week my husband was diagnosed when I reminded him to use his chemo cream on his bald head he replied what's the use. We quickly went into acceptance and now we make jokes about it,
Third, sell the two story house now UNLESS there is a good option for downstairs bedroom and modified bath.
Nancy, you can do MORE than you ever imagined. Just take one day at a time and be grateful for the good things today. Practice that and it will change your life, I promise!
Hugs,
Sherry

Hi Nancy,

What a lovely note! Thank you for contacting me! Going to check out your posts and please know since I'm new here and still trying to figure my way around, so if you don't hear more from me soon, don't hesitate to poke me!

Sending you courage!
Hugs,
Sherry

I'm sorry to hear that he doesn't qualify for the VA benefits. It has definitely made our lives less hectic and not quite as scary. With that being said, it is still frightening to not know what our future holds. My husband and I have always been self-sufficient and made our own way, all through our lives. We have always been the ones to help others. Now, we both find it humbling to receive so much support from our friends and family and total strangers. Needing courage doesn't begin to describe what I feel on a daily basis. So glad to find this forum to have others who understand. Thanks Nancy. I hope things get easier for you.

"someone who is so generous with her thoughts and words" That is the kindest thing I have ever heard, I am use to hearing very outspoken, and talks a lot. LOL Don't you find the PALS and CALS on this site amazing, I sure do. We are blessed to have the ability to communicate so readily.
Paulette

Hi Nancy,
Thinking of you. Did he like the Ensure? Kim

Hi nancy! Feel free to ask anything you'd like--a private message is fine at [email protected] and I can give you my number thereafter. Have a very nice day! Marie