Question: about progression of ALS (how fast? )

[hopingforcure]

Agree completely with the previous posts. I am of the mind-set that spasticity can vary day to day week to week, and can really control how strong we are. I agree that we can have days or week's that are better than others, for example after coming down with a virus this summer, I was so weak I could not even lift my head.

 

[Marose]

My mother is scheduled to have some tests for her speech and swallowing tomorrow. Can anyone tell me what the testing is like?

 

[John1]

My mother is scheduled to have some tests for her speech and swallowing tomorrow. Can anyone tell me what the testing is like?

Marose, you don't say what tests she is having so it's hard to advise you. One swallowing test involves drinking a barium-laced liquid that is opaque to x-rays so that the upper GI tract can be scanned. If they also use a fluoroscope, the test can be followed on a screen in live action and is very interesting to watch. It is described here:
http://www.stjohnsmercy.org/healthinfo/test/gastro/TP046.asp

If you tell us what actual speech test she is taking, someone here can likely describe it.

 

[Tina]

Answers to many of your questions

Hi Pearl,

Saw your posting but had to register first and now am unable to figure out where I was. I have alot of answers, as I am going through it all now. Hopefully this will get you started.

My husband was just finally diagnosed in May after 8 months of being told nothing was wrong even though he had stoke like symptoms. Anyway, where to begin! We just found out after 1 week of applying for SSD that we were approved. The problem is we will not get any money till December. Figure that one out. By then he may pass on. Maybe that is why they have the 5 month waiting period. Who knows. Anyway we were told the same thing about getting our affairs in order. The disease does progress rapidly for some. In my case it has. Make sure you have a living will, POA & regular will. Discuss all possibilities. As my husband stated he wanted nothing till I was able to convince him that some things might be ok to get for a while. Especially in his case because his legs are still ok. You really have to way out what the disease is controlling. As far as bankruptcy, we are trying to stay ahead by asking our community for donations to help till we start receiving money because once all is said and done I will file then, as you can only file every 8 years (my job happens to be a paralegal in bankruptcies, so I have knowledge there). Right now we are receiving a lousy disability check from his employer but in no means are we able to pay our bills. So another thing we are doing is having a benefit to help us get by. I also started a bottle and can return at a local place so people can donate that way also. Well I am going to try and get back to where I was before. If you still need help hopefully you can find me. Take care. Prays with you. Tina

 

[shelli458]

I got mom the machine so she could type to us and we took turns(3) daughters with her but the zanaax and morphine under the tongue helped her relax.Use all you can God Bless

 

[catcaniac]

I have been reading many of the posts and with surfing the net realize that each persons journey with ALS is different. My husband is 35 years old. In reading many of the stories on here, my husband's progression (even though we are waiting for a second opinion diagnosis) with this is more rapid than most of you. He literally has gone from no symptoms at all in May 2010 to slurred speech, muscle twitches, 45 pound weight loss, asymmetrical muscle weakness more pronounced on the right side, only able to walk minor distances with use of walker, needs assistance getting out of bed or chairs, takes two people to get him out of the floor if he falls, cannot manage more than a small step up holding on to something, cannot open bottles w/o assistance, head drop is quite pronounced, minor swallowing issues, and 40% reduced pulmonary function. I have seen the average progression is 2 to 5 years but is that true at times for people with such a rapid onset. I just want to be real with myself and decide how to spend the time with my husband that we possibly have left and was wondering if anyone else has progressed in this way.

 

[SueG]

Dear Catcaniac, I am not sure my progression is as fast as your husband's, but it is enough to scare me. First very minor symptoms late July (an awkward left hand)- still no functional symptoms until October - at this point I am still able to do most things for myself but am weak overall,, cannot open jars/bottles, cannot do my own buttons, have pronounced speech slurring, typing with one finger on my LH, and starting with running out of breath when I talk. Legs are generally OK but slow and no stamina. So who knows how it will continue. I remain hopeful, but distressed (an odd combination!). Wish you all the best with your husband.
Sue

 

[joelc]

There are plateaus that can happen where there is no progression for a period of time. I hope one happens soon for you guys!

 

[Alyoop]

Catcaniac. I do not have ALS but work in neurology. You are asking for the honest blunt truth. 2-5 years is of course the average. People fall on either side. For some people progression can be fast and ruthless, and can fall well under 2 years. It can plateau as Joel said but once it takes off at a fast pace, it tends to actually speed up, a bit like a rolling stone gathering speed. It's hard for me to say this as we all like to be positive, but it's only fair if you have a limited time to be honest. You need to do all you can while you can.
I knew a patient with obvious mnd who had a dr that refused to diagnosed it, as it did not fit into the tight diagnostic " box ". The chap had not been given the opportunity to get on and do what he wanted, and then it was too late.
I know another man who was told he had mnd. He did fit the "box". He sold up, purchased a motorbike and spent 6 months riding around USA. He got better, but never had any anger toward the dr ( my husband) because he was pushed to fulfill his dream and on top of that was well.
What I am trying to say is no matter what take NOW and do what you can.

Aly

 

[LizT]

I agree with Aly. If your hubbys got the disease, then time is of a sensitive matter, whether he lives 2 years or 17.
In all reality, noone knows how much time they have so everyone should be living like they are dieing. But the sad thing is, most folks (me included) needed this or another dreaded disease to punch them in the face to make them realize how special our loved ones are. Human nature- i know. But in a way, thats one good thing that this disease brings. It allows people to treat one another the way we should be treating each other all of the time.

 

[catcaniac]

Thanks for all the posts. I didn't really need this to punch me in the face as I just met my husband 4 years ago and we married in June of 2008. He is the most wonderful man in the world, ALS or not, and I have been happier every day with him than I was married to my first husband for 18 long years. I have two wonderful sons and thank God for them every day. My husband was never married before and has no children of his own. I have put in for leave at my job and am staying home with him now to enjoy as many moments as we can. People at my job have been absolutely wonderful and have agreed to donate enough leave to take me through the end of the school year. I supposed I am a bit selfish as I would rather spend time with him now while he can communicate with me than later when he is too sick to enjoy a movie or moments together. But then I don't know if I will ever be willing to give up time with him. Thank you for the honest reply Alyoop, I know you are only trying to help me understand that fast progression usually is not a positive outcome. No one has a crystal ball but I feel the only decision I can make based on all the evidence is to be with my husband while the time is there. I love my job and am definitely a career woman but my hubby takes first place on my list. He is so in denial though. He says every day...maybe I don't have it? I am telling all of you....he has it. I try to leave that hope alive for him because he is not ready to accept that he has a terminal disease. He has to accept it on his terms. Anyone who could help me with how someone with the disease actually accepts what they have would be appreciated.

 

[Alyoop]

Your husband may have this terrible diseaes, but what a blessing he has in having a wonderful partner like you. You have brought tears to my eyes with the love for another that you have. Bless you both
Aly

 

[abbas child]

Hi Catcaniac...I left you a message on your profile page re your last statement: "Anyone who could help me with how someone with the disease actually accepts what they have would be appreciated." Just my own story. Click onto your name in blue to get to your profile page if you want to read it.

 

[rose]

You know what ? I know I say I stay in denial, which may be true, and probably does help, but, I think what helps me more than anything else, is that I don't let the illness become the most important, interesting thing in my life. I make it take a seat waaay in the back of the bus! really. It was not a conscious decision specifically for a coping mechanism, but, it has definitely been a conscious choice as far as how I live my life.

Catcaniac, Your hubby is lucky to have someone who loves him like you do! good luck, and welcome to the forum.