curious about what to expect in the future

[CindyM]

Hello munozg - interesting screen name. does it have an Australian significance? Anyway, I am glad you decided to join us and look forward to hearing more from you. Cindy

 

[munozg]

Hi Everyone

Hi from Downunder,
Sorry for the screen name its a actually a street in Chile where my mother in law grew up. I was trying to think of one quickly.
I was thinking that my Dad would have bulbar as he slow speech initially, then swallowing problems, Speech pathologist has given him thickener and he didnt
want to use it, but may change his mind shortly now he has a diagnosis. His tests on muscles have shown atrpohy, I have not the detail as he has not really given us any yet.
He has just got the diagnosis a few days ago, they have just said MND so far. Mum said "Umm OK" to the neurologist, he replied, 'No, it's not OK".
We all feel like we are on a bit of a rollercoaster, I am just recovering from an AMI and heart surgery which came totally out of the blue a few weeks ago.
Cheers,
Mel

 

[CindyM]

Yikes! that's a lot to deal with! Hope you are recovering nicely. No need to apologize for the screen name-I just like to ask as people usually have interesting reasons behind their names. Cindy

 

[Montana Carol]

Possible ALS Cause

I hadn't read this thread before about head trauma as a cause of ALS. Interesting. I haven't had any head trauma ever; but I had breast cancer in 1990 with six months of chemotherapy that was really hard on me. I also am a big user of herbicides -- I used to walk our 10 acres with a backpack sprayer trying to kill the weeds, later got a 25-gal. model to pull behind our ATV or riding mower. I have always tried to be careful, but I'm wondering if the chemicals could have been the cause of my ALS. Carol

 

[CindyM]

Yes, Carol. Some do believe that there is a connection. I have heard AL say that a relatively higher percent of firefighters get ALS and some think it is due to the chemiclas they are exposed to. And one of our CALS, Patty, thinks her husband was eposed to too many chemicals when he was a duster pilot down in Mexico. There is just not enough research being done. Cindy

 

[JACKIEMAX]

Don't Know Where To Post This, So...

I DO NOT KNOW WHAT THREAD TO POST THIS UNDER, BUT SURE HOPE IT IS READ, AND I GET SOME FEEDBACK. I TOOK MY HUSBAND WHO HAS LIMB ONSET ALS FOR ONE AND ONE-HALF YEARS. HE IS ON OXYGEN 24/7, ON BIPAP AT NIGHT AND SOME DURING THE DAY. HE STRUGGLES TO BREATHE.

TODAY WE WENT TO HIS RESP. DR. WHO SCHEDULED HIS THIRD BREATHING TEST THIS FRI. HIS DR. FEELS HIS BREATHING CAPACITY IS GOING DOWN, AND OF COURSE WE ALL KNOW HERE THAT IT IS.

HERE IS WHAT I WANT TO SAY TO YOU. I CRIED AND BEGGED HIS DR. TO EDUCATE ME ON WHAT TO EXPECT NEXT. HE IS IN A WHEELCHAIR NOW, AND CAN ONLY WALK ON A WALKER FROM ONE ROOM TO ANOTHER. HEAT ALMOST KILLS HIM, SO HE STAYS INSIDE WITH THE HOUSE FRIGID ALL DAY.

THE DR. LOOKED ME IN THE EYE AND EXPLAINED WHAT HE WOULD BE GOING THROUGH SOON. NO USE OF ANY MUSCLES, LAYING IN A BED NOT BEING ABLE TO MOVE, HAVING TO BE TURNED, HAVING A VENT SO HE COULD BE FED THAT WAY, BUT A VENT WOULD NOT ALLOW YOU TO EVER TALK AGAIN. AN ALS PATIENT'S MIND IS ALWAYS STILL GOOD, SO THEY HAVE TO LAY THERE AND 'THINK' ABOUT WHAT WHAT THEIR LIFE USED TO BE LIKE, AND WHAT THEIR LOVED ONES ARE GOING THROUGH. I CRIED THE ENTIRE TIME I WAS THERE.

I BURIED A HUSBAND 12 YRS. AGO FROM LUKEMIA, AND HE WAS ACTUALLY A DOCTOR HIMSELF, BUT HE DID NOT PREPARE ME FOR WHAT WOULD HAPPEN, WHEN TO TAKE HIM TO THE HOSPITAL, WHAT TO EXPECT - NOTHING. THEREFORE I WAS BLINDSIDED WHEN IT ACTUALLY ENDED AND IN COMPLETE DENIAL. I CANNOT GO THROUGH THAT AGAIN.

PEOPLE KEEP SAYING TO ME 'HAVE MORE FAITH, TURN THIS ALL OVER TO GOD, QUIT CRYING, QUIT WORRYING, ' ETC. I KNOW I SHOULD, BUT UNTIL THEY HAVE WALKED IN MY SHOES, THEY DON'T KNOW WHAT THEY ARE TALKING ABOUT.

AM I WRONG, FRIENDS? have i lost my faith? can you all know in your mind that your loved one's life is not a life when they get that way at the end?. please share with me.

jackiemax

 

[CindyM]

Jackie-I am so sorry this is happening to you again. It must feel like a double whammy! I bet you are not the first person of faith to question "why," and I really have no answers myself except that I once read that it is not a punishment from God or even a lack of a God but just bad things happen to good people.

Of course you will be able to stop crying and share good times together, even as he gets to the point where he needs you to turn him. Friends who tell you to stop crying now are missing the point. You are entitled to grieve.

Please sign up for Hospice as soon as you feel able. They will come to your home and help both of you maintain the warm and loving atmosphere you are used to. And they are great teachers about what to expect. Warmly, Cindy

 

[nspoc]

Hi Jackiemax -

Really sorry about your husband - but you got atrociousRE advice and info! The person who determines quality of life is the patient - not the doctor.

My experience is that not every patient goes the way your doctor explained. Our ALS clinic told us the statistics are that only 10% of patients ever reach the "locked in" state.
In the meantime the brain is what provides our quality of life - ask Quadbliss on this forum. Your doctor should be ashamed for using such scare tactics.

My further experience is that physicians are very afraid of severely compromised patients. I believe they push death out of their own fears of disability. I have worked as a counselor/pyschologist in countless hospitals since the late '70s. My husband is a physician, my best friend is a physician - their take on quality of life is stupefyingly personal. They have only to ask the PALS what they want - the PALS' brain will still work!

As for what will happen - that is hard to say. But my experience with my PALS (I am the CALS) is that she adjusts to every change, although the changes are upsetting. Right now her breathing is 30%, on bipap at night and during naptimes. Talking about a ventilator. She can still eat and talk, although her voice is affected by low air volume. Totally paralyzed legs, deteriorating hands and arms. I turn her in bed and postion her - no big deal! She still volunteers computer work for the League of Women Voters and for our local State Rep. Although she tires easily she is still up for parties. We are living with this as a chronic (and deteriorating) condition - but we are living with it with good quality and some joy.

Your doctor misinformed you - if you could eat and talk before a vent - you will be able to after a vent. They have to select the right trach for that - and teach the patient - but it definitely does not end speaking! If your husband can walk with a waker - once his oxygen is stablized through a vent you may see more energy and less depression.

Google Diane Huberty. She is a former Neuro clinical specialist RN who has had ALS for 22 years. She writes in the ALS publications, and recently wrote an article in Quest on her clinical knowledge of venting with ALS patients, and her own personal experience. Read her publications in Quest and the MDA/ALS Newsletter. Then decide.

Also - go over the posts in this forum from Quadbliss - very informative. He is quite advanced and still loves life.

Sorry for this novel-length post - but I have tons of personal experience - and this doctor should be shot. She/he visited a horror on you - and for that I am terribly sorry!

Keep asking questions - go to a different doctor, show her/him the articles by Diane Huberty - but don't succumb in spirit.

Please take a deep breath - we will all help you with this!

Beth

P.S. The most destructive thing she said is that ALS patients lay in bed and dwell helplessly on their fate. Hogwash! ALS patients are who they were before the illness - yes they become paralyzed but they still interact, even have sex! This doctor should not work with ALS patients - sounds very frightened and traumatized.

Keep contacting these forums - Also ALS-TDI has a good forum with excellent, knowledgeable and experienced people. Their doctors and ALS nurse monitor the forum and will answer questions from a very intelligent perspective. Mary Beth Geiss, RN is especially good.

Good luck! and hang in there.

 

[brooksea]

Jackie,

I'm terribly sorry you had to experience such a disheartening description of what was to come for your husband! What a lousy way to talk to a CAL!

Do you have a relationship with the als assoc in TN? Perhaps they can visit with you and give you a better perspective, since they deal with patients at that level of the disease already.

Please hang in there and let us know how you and your husband are doing. This is yet another attempt by one in the medical profession to write off a PAL!

I agree with the suggestion to try and find another doc.

 

[saska]

Oh Jackie...I am so very sorry you were treated in such a way. No, you have not lost your faith. Your faith is being tried in a manner that very few people have known. Quit crying and quit worrying? You are right -- people who say things like that have no idea what they are talking about. Just because you acknowledge your grief and anguish, and acknowledge your fear, does not mean you have lost your faith.

What Beth wrote was right on: "The most destructive thing she said is that ALS patients lay in bed and dwell helplessly on their fate. Hogwash! ALS patients are who they were before the illness."

You and your husband remain in my prayers, Jackie. God bless you, dear.

Sharon

 

[hboyajian]

Dear Jackiemax, You are a person of great faith and caring, or you would never have made it this far. I believe that God knows it it ok to cry, even good to cry, necessary to feel all the complex feelings that you have. God is there to help you through them, not to deny them. You know more than anyone how devastating it is to lose your husband. Many other people, including myself, have no idea, and may say things that they think are helpful and kind, but really do not make sense.

I have a few thoughts on what you have shared, which I hope are not off base. One is, have you and your husband had the chance to have a heart to heart talk about what he wants regarding living on a ventilator? I know this is an incredibly difficult conversation to have and that day-to-day concerns regarding his care and comfort take much time. Also, how can he make a decision without complete and accurate information, which it seems your current doctor is not able to give you? I agree with Beth that there are many people with a good quality of life on ventilators, and your husband needs to hear about them and their perspective to balance the negative perspective of the doctor. There are also people who have chosen to be allowed to die naturally when their breathing fails. Neither choice is right or wrong, it is simply individual to each person. I strongly believe that we who are dealing with ALS need the whole story, not just one negative slant, and certainly support not judgment about either choice.

Also, it an ALS specialist who recommended the oxygen during the day with bi-pap at night? I have heard some debate about whether it is good to have a PALS on oxygen only for such a length of time. Maybe your husband needs to be on the bi-pap during the day also to help him release carbon dioxide. If his CO2 is too high it can make him lethargic. With ALS it is not all about getting oxygen in. What I have read is that too much oxygen input can result in a PALS' lungs to be less stimulated to breathe out waste gases such as CO2. If he has one of the big suitcase sized bi-pap machines like the one my dad had, it can really limit mobility. I have heard other people here say that their machine is much smaller and more portable, easier to be on during the day.

I hope that you have supporting and loving people around you both. Sincerely, Holly

 

[nspoc]

Hi Holly, Sharon, Jimercat and of course, Jqckiemax-

You have said really good things about the ventilator - get all the information and then decide. Either decision is legitimate - but it is the PALS and family who must decide.

I have been thinking about you all day. Of course you will cry - I cried so many nights I cannot even remember how many. But now I have hit an equilibrium. Pat (my PALS) is not dying every minute - we are living with this disease. I pray that you and your husband will find the peace we now have.

I have bouts of fear - but they do not consume me. I arm myself with information, with good equipment and with the counsel of people on this forum. All have helped.

I hope we can help build your armor against terrible practitioners like you experienced.

Also - Holly said it VERY well - I am concerned about the pure oxygen thing. My Pals is on one liter at night - bled through her bipap - never on oxygen by itself. Sounds like your husband needs his bipap more during his waking hours. Also - maybe the settings need adjusting - not just the pressure settings, but the duration of breaths and other parameters. Can you get to an ALS center with a pulmonologist who specializes in ALS?

Our center (at Northwestern University) is unbelievable, as is the Les Turner ALS Foundation in Suburban Chicago. Pat is monitored monthly by reading the card in her bipap machine, which by the way is very portable and can be hooked up to a battery. Anyway, this machine records breath lengths, CO2, and many other dimensions. If you could be set up with an initial consultation with our pulmonologist, maybe you can be monitored remotely. Pat's forced vital capacity is only 30%, but she is comfortable, with good oxygen levels due to her superb pulmonologist. This woman (Dr. Lisa Wolfe) shoots straight, and is up on ALL of the ALS pulmonary research. YOU make the decisions, with good information, and she keeps you fully informed of your current situation. Maybe you could look into a consultation with the clinic at Northwestern.

Also - Jackiemax -Don't let anyone undermine your confidence in yourself. You are doing a great job with all of this. I have followed your posts and you are wonderful. Please let us know how you are! Beth

 

[Frizzel]

Just finished reading this thread.

Wow! What an honor to be a part of this forum. There is so much support, love, caring, some straight shooting to get us to see things with a more positive perspective and just WOW! Where else can someone feel like they are sinking into a black hole and someone comes along with a flash light.

Mel, people tell me all the time I should have more faith. Put them into our bodies for one day and they'll know what faith is.

Thanks to everyone who posted their thoughts on this thread. Just checked in during work and I am inspired by each of you. Thank you thank you!

Cheers! Frizzel

 

[Icanmanz]

Wow! What an honor to be a part of this forum. There is so much support, love, caring, some straight shooting to get us to see things with a more positive perspective and just WOW! Where else can someone feel like they are sinking into a black hole and someone comes along with a flash light.

Mel, people tell me all the time I should have more faith. Put them into our bodies for one day and they'll know what faith is.

Thanks to everyone who posted their thoughts on this thread. Just checked in during work and I am inspired by each of you. Thank you thank you!

Cheers! Frizzel

Hi everyone! I just turned my computer on. I have been gone all morning paying bills, and running errands, and yes, it is still raining. It has been raining here in Texas for almost 2 months. It rains like crazy, it stops, and then it starts raining again.

Jackie, I am so sorry you are going through this. I know the feeling. The only thing you can do is spend as much time as you possibly can with your husband. Tell him how much you love him, non stop. Walk up to him, smooth his hair, read him a book, if he is tired just pull up a chair right next to him and just be by his side. That's what I did with my son. I told him "I love You!" a trillion times a day. If I entered his room, I'd ask him if he needed anything, and I would finish with an "I love you." I'd rub his feet, his arms, helped him with the stretching of legs and arms. Poor baby, he would just lay there, and stare at me. Jackie, you'll never guess what he asked me. He pointed at his speaking device machine, and he started typing away. He asked me if I was mad, because I was taking care of him. I looked at him, and said "Don't be silly. Of course not!" Bless his heart.
The best you can do Jackie is take it one day at a time. I am not trying to spit in your cereal bowl, but the end is sad, and very, very heartbreaking. It drains you. I felt like I died a thousand times, but after watching my baby suffer so, to me it was a relief when he took his last breath. When you know for a fact that they will never, ever get well, would you really want for them to lie in a vegetative state. My son had no real food intake for months. Now that was heartbreaking. My Heavenly Father gave me the courage, and comfort. I did all my crying while my baby was suffering. Now that he is gone, sure I miss him, but I get so mad at myself, because I can't cry. I try to cry, but I can't! I guess God works in mysterious ways.
Let me tell you about a dream that I had last night. I live in Tomball about 20 miles north of Houston, my son is buried in Houston. I dreamed that I jumped in my car, and headed for the city. I went straight to the cemetery. I was going to visit his grave. I made it to the cemetery. I stopped by the office, and talked to the person that's in charge. After that I hopped in the car, and headed to his grave. I woke up before I got there. Isn't that something? I am going to his grave tomorrow if the weather permits. I never thought that my life was going to change so!
Okay friends, take care, and God bless! Jackie, keep us posted. Jamiet, I have been praying for you, friend! God bless you all!

xoxoxo,
Irma