It's Progressing So Fast!

[mlbugge]

I attended my first ALS support group last week. I was amazed to see patients with ALS that were diagnosed several years ago. They were so functional. Some needed assistance walking, had voice projection difficulties, etc. My husband was diagnosed in December '07 and totally immobile. He has no use of his arms, hands, or legs. His ability to speak is going fast, too - very slow, slurred speech. Has anyone else experienced such quick progression? I know that every patient is different but I'd love to hear about others in the same situation. I feel like getting info from someone who is going through this (or has gone through this) might prepare me for what's to come. Please respond.

[whimsy_1971]

HI,

Im soooo sorry

My husband was diagnosed Oct of last year. He is no longer moble, no use of hands or legs. He is getting a dinavox to help him communicate. He is also starting to asperate on his liquids so feeding tube coming real soon.

I know how frustrating this is. Everyday you wake and wonder what has been taken away today.

Just take it day by day, at least thats how I've tried dealing with it. I wish I could tell you it will be ok. I feel your pain, and if you ever need to talk private mess me, or just contact me.

This site is a great place to be, so much support, and love from everyone. They have helped me in ways I didnt know they could and I dont know any of them personaly.

[gimpydad'slady]

My husband has progressed pretty fast too. He first started showing noticeable signs in Nov/06, slurred speech that would come and go, and twitches. He was Dx'd in 05/07 with Bulbar ALS. He could then walk, and talk, but had fasculations and limited use of his left side. Now he is in a wheel chair, speech is very slurred, he uses a speech generating device to speak. He can no longer walk with out the use of a walker, which he uses only to go to the bathroom. I help in the shower, dress and cut up his food. He spends most of his time in his lift chair, or his scooter. He has lost so much weight, and having dietary issues to were we are now looking at possibly getting a PEG soon. I am home with him full time now. He has deteriorated so quickly.

But as Christy mentioned, we take it day by day, laugh when we can laugh, cry when we need to cry, and tell each other that we love each other everyday. It is so scary not knowing from day to day, but we try not to focus on that, just one day at a time.

I'm new here too, and there seems to be quite a good group of loving, supporting people here.

[fiddleplayer51]

Hello Gimpy,
Welcome to the forum. It sounds as if you've got the equipment you need for caring for your PALS. It also sounds as if you've got good coping skills. That's fortunate because as a CALS, you definitely need them.
On days when you don't feel as if you're coping very well, feel free to tell us about it and take a load off. We've heard it all and welcome your good-day input as well as your bad-day input.
Take care and keep us posted. All the best to you and your PALS.
Jane

[gimpydad'slady]

Thanks for the welcome! Its nice to know we are not alone in this aweful disease.

The coping skills are sharp for now, hopefully I will be able to keep it together. Bri and I have been together for over 20 years, and we have been thru alot. I just keep telling myself that everything has a purpose, and just embrace each day, one day at a time, so far that has worked for me.

Things are kinda getting a little hairy with insurance issues. I left my job of 5 years, taking a FMLA to take care of Bri. My FMLA is up, not going back to work, and insurance is running out, and fighting with the VA. It gets stressful, but when you read what some of the people are going thru here, I can say I have nothing to complain about. We have each other, and that is enough for me right now.

Well a cure would be nice!

[Jeannie]

Hello~
I am sorry to hear that this horrific disease is progressing so quickly for your PAL. My mother in law was diagnosed in Jan 08 with bulbar als and is progressing at an alarming rate. She can not speak at all, she has big problems eating (takes about an hour to complete a meal) she can no longer lift her arms, her hands get weaker by the day and it looks like her right hand is starting to atrophy. She still has the abiltiy to walk but has fallen latley and her legs are loosing their muscle mass quickly. She does have difficulty showering and needs assistance. I feel horrible for her as the dr's told her she would have 2-5 years and at the rate we are going I would be supprised if she makes it to Christmas. She looks so sad (undertandably) all the time and I don't think she feels she has much of a quality of life. She really cant do much and when she tries it completly exhausts her. Just getting dressed to come over for a visit is exhasting.
I am sorry that you are going through this. It is so devestating to everyone affected. Just know that you are not alone.
It is so sad, I don't even know what to pray for anymore
God Bless
Jeannie

[fiddleplayer51]

Jeannie,
I'm so sorry about your mother in law. She must feel very discouraged.
Have you investigated having a PEG tube placed for feeding? Taking an hour to eat is excessive and very fatiguing for PALS.

When my bulbar-onset PALS husband (diagnosed April this year) told the dietician at the ALS clinic that he was having to take an hour to eat, she said that was excessive and that he should not spend more than 1/2 hour to eat a meal. Anything beyond that causes fatigue of the muscles involved with swallowing, thus greatly increasing the possibility of choking and aspiration. It was suggested that he have a PEG tube placed right away so that he could get supplemental feedings as well as extra water, etc. He has done that and it's a blessing.

Has your mother in law lost weight? If she is taking so long to eat, she must be having difficulty getting sufficient calories and will quickly become debilitated.

I read in some of your earlier posts that your husband's family seems to be in denial about what is happening with their mother. Has there been any improvement in the ability to discuss as a family what is actually going on with your mother in law? Did you get a chance to go to a lawyer with her?

I hope you can find appropriate solutions for her. You're so amazing to be such a loving and concerned daughter in law. What a comfort for her.

Please keep us posted on how things go and I feel as if you really need to look into the PEG tube placement pronto. Good luck!

All good wishes,
Jane

[Jeannie]

Dear Jane,
Thank you for your kind supportive words. This has been a totall nightmare as I am sure it has been for everyone.
We approached the lawyer issure and home health aide issure then all of the sudden she didn't want to go. I really think that it is her husband talking and not her. I had her over yesterday and we briefly spoke about it and she said maybe my DH could just help her with one on the computer. I said ok, anytime. She is such a brave person and I think that many in the family are in denial about how ill she is and how quickly she is fadingW, including her husband.
With regards to weight loss at her last dr appt she had lost 8 lbs since the previous visit. She is drinking ensure with her meals to get the extra calories. (plus my daughters love to make her ice cream sundays with hot fudge!!) At her last appt. nothing was mentioned about a feeding tube but my sil is going to this next one. Heck, we don't even know if she wants a feeding tube which I think would help. Her breathing is another issue. I don't know what her exact numbers are but they are about 50-60%. Again something else we need to know if when the time comes does she want a respirator. AHHHHHH When we all discuss it, everyone says they know they need to talk to her but, in comes the fear and denial which I totally understand. It is like ALS is the giant elephant in the room.
Any advice will be welcomed
Love and God bless all of you fabulous coragous people
In friendship
Jeannie

[gimpydad'slady]

Bri and I had some of those issues in the beginning of his disease as well. Last summer when we went to visit my family in Georgia, everyone wanted to talk about everything, except ALS. Bri felt so uncomfortable, because at home, with our family and friends, we don't dwell on it, but it is something we both live with everyday, so it is something that is discussed often. What worked for us on our visit, I pulled my sister-in-law aside, she is a nurse, who has a cousin that is a quad, and asked her to bring up the subject occasionally during our visit. Eventually everyone was comfortable with talking about it.

My feelings are, most people don't know what to say or how to address it, so avoidance is unfortunately the choice people make. With Bri, he'd rather you'd not say nothing at all, than waste your time talking about the weather...our son, and I feel the same way.

The only person that still has a problem with discussing it, is Bri's father. He can talk about it with everyone, but Bri. He can't handle when Bri shows emotion, tears for instance...he for some reason is very uncomfortable with that. Also because Bri has lost his ablilty to speak, his dad doesn't visit as much. That hurts Bri, and makes me upset,:mad: but you can't make people cope with things if they don't want to, and again, unfortuately denial is the chosen route.

It is like a big elephant in the room....but it doesn't have to be.

God bless you all...keep the faith!:-)

[CindyM]

You remind me of the year my sister-in law was getting a divorce. She claims the rest of her fmaily made her feel invisible for months, as they could only discuss things like the weather in her presence and then only in strained tones. :-D That was some time ago and eventually they adjusted.

You are so right that it is helpful to talk a thing openly. My theory is each family needs at least one person willing to break the ice. Good for your sister-in-law for being willing to take the plunge!

[gimpydad'slady]

Thank you, I am so blessed! That same summer, my sister-in-law had us spend the evening with her cousin, the one who is a quad, and his family. It was an exposure thing that she and I had orcestrated for Bri and our son. Her cousin Clinton, he was amazing! Even though he is paralized from the neck down, he has a great since of humor, and a an awesome outlook. The experience was a very positive one for us as a family. Clinton depended on his cousin to do everything for him, but he would get offended if you called him handicapped. He would say, "I'm not handicapped, I am gifted, and blessed!

My sister-in-law just visited last week, and we had an awesome get together while they were here. She is an angel!:)

[JACKIEMAX]

It helps me so much to come to the forum when i get a chance and see a
mirror of what we are going through. my husband was dx in Jan. 07 but
could walk, talk, breathe on his own, drive a car, eat by himself, etc. Now,
he has to be fed, is bedfast, wears a bipap 24/7 and would stop breathing
if off it for over 20 minutes, has to be turned over in his hosp. bed, etc. etc.

a fast progresion in some ways might be a blessing. let me explain what i
mean. my husband was a vital and healthy man at 69 when he first'got symtoms
a year before being dx. he is retired air force, played racquet ball for 35 years,
and could run rings around thirty year olds. so, watching him lay there and
can't feed himself, has to have enemas weekly as his bowel muscles don't
work anymore, can't talk as his bipap is over his mouth, etc. is heartbreaking
for us both. he says some days he wish God would come on and get him.

So, for those of you caretakes and family members who are watching your
loved ones lose their lives before your eyes, you have all my prayers and
compassion.

jackiemax

[fiddleplayer51]

Jackie,
Boy do I hear what you're saying! You've been doing this ALS thing for a year longer than us. My PALS' progression is faster than what you described for your PALS, but I have to see that as a blessing because it's too heartbreaking for either of us to contemplate the total dependency and prolonged day-to-day living/dying that this disease forces on us. It's so tragic watching the steady decline and ever-increasing deficits.
Blessings to you and Horace. Words cannot describe how sad I am for your description of how things are now for you.
Peace to you, Jackie.
Jane

[fiddleplayer51]

Welcome, mlbugge,
Your ALS support group sounds like ours. One of the PALS has had his diagnosis for 16 years! My husband is progressing very rapidly, too. His first symptom was nasal speech in December 2007 followed by slurring of words in February. His issues are bulbar mostly. Talking is just about gone, swallowing gets more difficult all the time, shortness of breath is creeping in. His legs are weaker, but he has pretty good use of his arms. His right hand fatigues quickly.

A representative for the ERICA Eye Gaze system is visiting our house this coming Thursday the 17th of July. ERICA is essentially a tablet PC that has eye-tracking software on it through which speech can be generated. It's amazing!

I'm so sorry about your PALS. Reading your first post I see that your husband's fall in January of 2007 is what launched you into this nightmare. It's such a shame this all happened just as you were getting into your new house. I wish we could just kick ALS in the a$$ and it would disappear!

I hope you will find comfort using these forums. They've been a life-saver for so many people.

Take care and best wishes,
Jane

[anneinma]

My DH was diagnosed in July 07. He also was a very vital, "young" 71. It was very difficult for him not being able to do all the things he loved to do, i.e. work on his house in his yard and garden. I had to start doing all of those tasks which made him very sad.

When people came to visit they talked about the old days. No one mentioned the illness which made visits very awkward.

In April 08 my DH accompanied me to Mexico.It is a trip we have made for years and he decided that he definitely wanted us to go. I now know that was his gift
to me. He used a wheelchair for the entire trip , took his Bipap which he used frequently. When we came home he told me he would not be walking much longer, he was losing the use of his hands and couldn't lift his arms. There was such sadness in his blue eyes. He passed away two days after we came home. Very peacefully and suddenly.

My husband would never have wanted to live with the disease progressing further. It had progressed rapidly and as you all know, one never knows what will be taken from our loved one day by day. I miss my husband terribly
and cherished every day with him but it was heart wrenching watching him being taken away bit by bit. I have to believe he is in a better place and not suffering.

[vmd]

I will keep all of you PALS/CALS in my Rosary prayers.

[anneinma]

I debated about bringing this up today and think if I can just help one person it will be OK.

When my DH was diagnosed he very bravely wanted to put his affairs in order. We discussed his wishes (no respirator, maybe a feeding tube). We did the proper legal work, wills, living will, DNR, we met with the priest and the funeral parlor. We discussed the actual funeral. These are very difficult subjects under any circumstances but I think they would be impossible for someone to handle if your loved one passes suddenly as my DH did or if they have respiratory failure and you don't know their wishes. It brought my husband peace knowing they were in place.

I will be forever thankful to my husband for his courage and unselfishness at being able to put these things in order before he passed.

There was something that happened after he passed and I called the caterer. She said, "you probably want paper plates, china will be more expensive". While we (DH and I) did not discuss paper or china I got a VERY clear message that my husband wanted china. That would be his way and I knew that message came from him!

[fiddleplayer51]

Anne,
What you said in your post about your husband not wanting to have lived with the disease progressing further is essentially what I was saying in my reply to Jackie. I think some PALS are just that way, and I as his CALS see the sadness creeping into his eyes as he says goodbye little by little to the things he loved to do. I don't want him to linger with multiple deficits filled with sadness locked in a body that no longer functions. I will miss him so much when he's gone, but when that time comes, I know that my comfort will be that he is no longer suffering and is at peace.
Like your husband, he has put everything in order including writing his obituary. He has made it as easy as possible for both of us and I am so grateful to him. I can't imagine dealing with some of those things with heavy sorrow after he's gone.
Peace to you, Anne. Thanks for sharing, and I hope you and your daughter are holding up okay.
All good wishes,
Jane

[anneinma]

Thank you Jane.

My daughter and I are doing the best we can - one day at a time as we did when my DH was with us.

Peace to you also.

[whimsy_1971]

Todays been a rough day for me. David went to the Als clinic visit yesterday. He has not been eating or drinking well. He cant use his legs any longer or his hands. He is chocking on his siliva and having a hard time breathing and in a lot of pain due to his back and shoulders, and His speech is all but gone now. This has all occurred over the past few weeks.

The clinic by the way is absolutley wonderful, but I left there w/ so much sorrow and pain in my heart for my husband. Thye suggested a feeding tube, a Bipap, a assist cough machine, medication to help w/ his saliva, and a suction machine. n

It kind of threw me for a loup. Dave is so sad right now. He cant even look me in the eyes anymore.

why do's this have to be such a horrible thing for them and us? I broke down at work today. I just lost it. They told me that they were proud of me for doing what I have so far, but that I needed to look into a assisting living place for him cause they have seen the toll it has done to me with little or no help and working full time. I dont know what to do. I m just trying to take my time. Things are a little ove whelming right now, and going so fast. i just cant think straight.

didnt mean to take over the thread.

[anneinma]

Oh Whimsy,

I wish I lived closer so I could help. Have you looked into Hospice?

I don't know what else to say. The Bipap did help my husband a lot. He used it all night long and it helped him to cope during the day.

Anne

[jimercat]

So very sorry Christy!

I just don't know what to say, except be brave.

Shame.

Others may be more helpful...

[CindyM]

Sometimes there are no words except to say we are sorry. :(

[sharonca]

I'm so sorry to hear what is happening. I can only suggest also that Hospice can be a wonderful help. Both of my recent experiences with the service were wonderful - so helpful and kind.

Sharonca

[fiddleplayer51]

Christy,
I was reading over some of your posts. July has been such a bad month for you. That sadness you said your husband has is the kind of sadness I see creeping into my PALS' eyes like I mentioned in the post above.
I know you must be exhausted, Christy. I'm so sorry.
Just as others have said, you really need to investigate having hospice help. It sounds as if you're truly to the point of not being able to hold up managing alone. You've got to think of yourself, too, and line up some help.
I just hate that this is happening to you. Please see what you can find out about hospice. What about FMLA?
Good luck to you, Christy. Know that we all are thinking about you and hoping for some solutions for you.
Jane

[JACKIEMAX]

the bipap that serves as a ventilator for horace began beeping off and on the other
day and we now know he is no longer to breathe deeply enough. this means the carbon dioxide is building up inside, making the machien go off, and at some point soon, he will go to sleep and slip into a coma, then be gone. now,,, everytime he goes to sleep, even for a nap, i am terrified.

jackiemax

[anneinma]

Jackie,

I am here if you need me. My true love passed away quietly in April. He just stopped breathing. Let me know what I can do.

[fiddleplayer51]

Jackie,
Is there anyone who can be with you so you don't have to be there alone through this?
I've PM'd you. Please call me if you need someone to talk to.
I hope you can rest tonight, Jackie. I'm sure it will seem like a very long night.
Jane

[anneinma]

Jackie & Whimsy,

I am so sad for you. I know those "looks" from my dear husband's blue eyes. It is heart breaking.

[quadbliss]

Hi Jackie,

Something sounds fishy to me. I don't know of any Bi-Pap with a CO2 sensor, or a pathway for exhaled air back to the Bi-Pap. Who is telling you this? Is his inspiratory pressure adjusted to the maximum?

Mike

[CindyM]

Mike- your tip made me fel somewhat relieved. I hope the beeping from Horace's Bi Pap means something else! Jackie- please take Jane's advice and call a friend or family member to come over. You guys should not be alone just now!

[nurburch]

Hi Christy,
I am so sorry to hear what you are going thru....I can so relate. My husband too is getting to those roads of'
awlful decisions that we have to make. Scottie was DX nov 06 and is at the point of total care from me. He
can still eat, but is coughing frequently with food/drinks. We too decided that he does not want FT or ventilation. He told me the other night that he doesn't want to die at home due to our children facing
that thought everyday. Our kids are 16,14,9, they help me with their dad daily. He wants to go to hospice and be comfortable. For him the fear wasn't death, but the thought of being a fish out of water. I am so tired and scared of facing the fact of that call will be sooner that later. I too still work fulltime and take care of the kidos. This diease sucks.....i will pray for all of us. thanks for sharing and listening.
sheryl/scottie

[fiddleplayer51]

Sheryl,
My heart goes out to you and your family. It's so painful what you have to go through with this disease, and you CALS with children at home are in such a difficult place. I'm so sorry for this daily struggle for you, Sheryl, of trying to maintain a home life for your children and meet their needs, working full time, taking care of your husband, not to mention dealing with your own sorrow and grief.
Please know I'm thinking of you as you make heavy decisions in the days and weeks to come. Thank goodness for the option of going to hospice where a loved one can just be made comfortable if they choose to spare their children the events of the end.
Peace and best wishes,
Jane

[JACKIEMAX]

hello to all who posted. esp. quadbliss. this bipap is not an 'assist' machine. it is one of only two in our city, and it acts as a ventilator. he is the only patient our hospice has ever had on a bipap 24/7. it is set for 16 breaths per min. and it does its job - it forces him to have that many. that's not the problem. it is the fact that his lungs will no longer allow him to accept that much air pressure from the bipap anymore. he is unble to take deep breaths on his own any longer, and that is what is causing cd to build up.

as the cd builds up, it ca'n't go anywhere, thus making him drowsy and sleepy. he will be sleeping more and more of the time now, and eventually will go into a coma. i have not rec'd any private messages from anyone via my real email address, and to the lady that said her husband passed away quietly in april, just stopped breathing, i send my sympathy and ask that she email me soon.

it is jackiemax12@aol.com

thanks for all your prayers and concerns.

jackiemax