Patience2 from Arkansas

[Patience2]

Good Evening. I never thought I would join this type of forum. I am a caregiver to my husband. Newly diagnosed - July 2013. Prognosis is terrible because of the onset of symptoms that began only in March 2013. Apparently the length between onset of symptoms to diagnosis predicts the end of life from time of diagnosis. I hate that. My husband is 46 and was diagnosed on July 17th and ironically on that same day was diagnosed with Lyme disease.
We have had good and bad days, with tonight being both. He has lost all movement in limbs except for a few finger movements and a little movement in his right leg. He is able to move his head from side to side but that is it. Up until today, he was wanting to pursue Lyme treatment and complete detox with over 27 supplements and a whole new way of eating.
He has been sick and hasn't heard from his primary care doctor in a few days, so today, he decides that he isn't taking any of the treatments for Lyme until he hears from the doctor.
Our life has changed. We have a 21 year old daughter in college and 14 year old son in 9th grade. My mother in law has moved in and she is wonderful. I can not image doing this alone.
I just wanted to say hello. I have so many questions I don't know where to begin. I know that my story is not news to many of you.

Patience

 

[vickim]

Sorry to have to say welcome. Everyone here is great, they are angels. You will find a wealth of information, so just ask away. Good to hear that you have help.

 

[bowser]

I am in northern Arkansas and a caregiver for my wife , age 68, who is in the final stages of ALS ( FEEDING PEG, PARALYZED, CONFINED TO BED 24/7 )

My thoughts and prayers are with you and myself, like everyone else here, are willing to help and share experiences.

 

[TGB1]

Hi Patience,
Sorry for your need to be here. I am a caregiver for my 86 year old mom who has bulbar onset ALS. I am glad that you have your mother-in-law to help you with your husband. You will find a lot of good people willing to offer their support and share their knowledge on these forums.

 

[Patience2]

My husband's decline has been severe and so rapid that we are all overwhelmed. We had a CT scan of his lungs today and it revealed that the lower lobes are partially collapsed. This was such bad news that my husband just wanted to go back to bed. He is up everyday but with assistance of a left and he too is paralyzed. He has been asking questions about the END of life and everyone is different but I do know that respiratory failure is what will happen.
Thank you Bowser for letting me know that you are also in Arkansas.

patience

 

[bowser]

My wife was told her lower lobes were bad awhile back.
A that time I was still able to get her up, showered, dressed , brought to potty chair, and she spent from 10;AM until 6;pm in wheelchair in living room.

First weekend in July , she got REAL weak and I was unable to lift her up for wheelchair or shower. She was too tired and weak to sit up in wheelchair.
The adult kids were called and they drove down from Minnesota to say their final goodbye. We thought she had days left.

She did not get better but "plateaued out" since July 6.
Nearly 3 months later she is bedridden 24/7 but still here.

She does watch some TV in her bedroom during the afternoon and remains in a good mood .

 

[Patience2]

What is Bulbar? My husband's onset was a drop foot which began in March 2013 and now he is totally paralyzed with exception of fingers, neck and head and a little movement in his right leg.

 

[Patience2]

my husband recently had a CT scan and it showed Atelectasis in both lungs. His breathing was at 88% the day of diagnosis (july 17th) By August 19th it was down to 76%, Down to 47% on September 9th and now the CT scan shows this as of September 30th. We go back to the clinic on October 7th. This his rapid decline, he is wanting to know how much time he has left and of course there is no way to guage this. Has anyone else see this type of rapid decline. When he was diagnosed in July, his doctor gave him to the end of the year at best.

just wondering here in Arkansas
Patience

 

[bowser]

I believe Bulbar is ALS affecting speech and swallowing ,,,,,,,,,,,before........affecting limbs.

When we attended ALS group support meetings in MN, summer of 2011, my wife was the only one who could not speak .

She was one of the few who walked into the room however.
Later, after her speech was gone and she had trouble swallowing.......................her limbs started to go bad fast.

Nearly everyone who was part of that support group when my wife and I went have since passed away from ALS.

One guy I met at the last meeting before we moved, was paralyzed and in a wheelchair. However, he could speak as clear as me and we had a great conversation as we found out we had mutual friends.

He had no trouble eating but his wife had to hand feed him.

He passed away 4 months after that meeting.
I was shocked when I heard that.

 

[bowser]

my husband recently had a CT scan and it showed Atelectasis in both lungs. His breathing was at 88% the day of diagnosis (july 17th) By August 19th it was down to 76%, Down to 47% on September 9th and now the CT scan shows this as of September 30th. We go back to the clinic on October 7th. This his rapid decline, he is wanting to know how much time he has left and of course there is no way to guage this. Has anyone else see this type of rapid decline. When he was diagnosed in July, his doctor gave him to the end of the year at best.

just wondering here in Arkansas
Patience

At the last ALS clinic we went to,May 2012, we pressed the Dr how much time my wife had.

He was reluctant to say at first, but then said..................." end of summer"

Summer ended, fall came, winter came, spring came, summer of 2013 came, and here we are.................October of 2013,

1 year,1 month after the time he felt was the end.

 

[Patience2]

Wow. No one can truly know except our Lord. Once he was diagnosed his doctor wanted him to visit the clinic monthly. Just by reading stories on this forum and comparing them to my husband, everyone else's decline is much slower. I mean, he walked into the doctors office on July 17th and by August 19th he was unable to do anything for himself and rolled in the office in a wheelchair. I have been looking for other posts that decribe this fast progression, but I can't find anything.

 

[bowser]

WOW !

That is fast !

 

[Patience2]

Today we got the diagnosis of pneumonia. Not what we need at this time. We also were trained on the Hill-Rom Airway Clearance Vest. My husband was very anxious about it but decided to give it an honest try. he ended up saying that he felt much better after using it for the first treatment for 20 minutes. After the vest came the cough assist machine. Worked like a charm. Once all that was over it was time for dinner and he ate better today than he had in the last 5 days. i am very exhausted and me and my mother in law have been working with or on something for him all day long. He is resting well right now and I am praying for a good night rest for all of us.

patience