How Fast can ALS Progress?

[Janet K]

My best friend was diagnosed with ALS in December. Already she cannot stand, lift her arms and her speech is hard to understand. How fast can this disease go?

 

[rose]

Janet, , I'm sorry to hear about your friend. ALS can progress at different rates for different people. Often times PALS will plateau for periods of time, and then progression begins again. I hope this will be the case for her. Welcome to the forum, I hope you're able to learn enough to help you with this.

 

[joelc]

Janet, as Rose said it is so different for everyone that there is no way to tell. I have seen people live from only 6 months to over 20 years. It is a hard disease because no one can predict how it will progress for a person.

Welcome to the forum! I hope you can find good and helpful information here.

 

[glenn gavanaugh]

does age not play a factor at all?

just curious!

 

[topsfan]

I too wonder about progression rate and how age affects it. My mother is 70 and diagnosed 3 weeks ago. We're going to clinic for the first time next week... not sure what to expect (anyone out there can help me with that would be appreciated). Mom seems ot have bulbar onset as well as in the limbs. Speech is slurred and gets harder to understand and voice weakens as the day goes on. Has problems walking more than a short distance, drops things constantly - difficulty gripping things. Chokes frequently on her saliva, drinks thorugh a straw which seems to help some. Sleeps most of the day, like she has difficulty staying awake. Could this be carbon related? Difficulty with diaphragm and expelling the carbon? Says if she lays down to sleep, gets pains in her chest and struggles to breath.
She also wears dentures, and within the past month seems to not want to do so? Not really certain why and she cannot seem to explain it.
I would appreciate any help this forum could give me in what questions to ask in preparation for the clinic visit. It is almost 2 hours from our home, so hoping to get as much out of the visit as possible so all of us can reach a better understanding.

 

[rose]

Topsfan,

Is she going to the Johns Hopkins Clinic (just wondered as you show your address to be in Maryland) I go there and think they're just wonderful.

 

[topsfan]

Hi Rose, we have been referred to Georgetown University Hospital for clinic. What can we expect? Any ideas?

 

[topsfan]

I'm fairly new to the ALS forums... still trying to learn my way around and have been rading as many posts as possible searching for similarities in symptoms and conditions, making lists of concerns and possible questions to ask based on what I've been reading. Who better to help than all of you, the resident experts. I do so appreciate the repsonses and feedback you all are so openly giving. I'm the youngest of three children, the only girl and very close to my parents both in relationship as well as proximity. I've been with my mother to every appointment, trying to take in all I can to better explain things to her as she does not comprehend things too well. It was me who first took her to the doctor to try and discover what was wrong as I noticed changes in her, even when she could not see them or chose to ignore them. Knowing I would be her caregiver, I truly wanted to know what I was and would be dealing with. Now I know what it is, but as I'm finding out - still no real idea what or when I'll be dealing with what. Mom hides so many of her symptoms from us. It wasn't until I was sitting beside her at a docotrs office and heard her struggling to swallow that I was able to find that out. WHen I asked her how long she had bene struggling with swallowing, her repsonse was "Oh, maybe a couple of months" - ARGGGHHHH It's so difficult to help her help herself when she doesn't share.

Thank you again for your support ... you are all awesome people and I wish I could meet everyone in person.

Mary

 

[brendapals]

hey Mary,
Welcome to our big forum family! It's a great bunch of folks on here, and it should help you and your mom a lot. Feel free to ask away-most everyone is open and honest. Remember, sometimes on weekends, it might be slow, but I'm sure you'll get lots of feedback!

At the clinic visit, from my own experience anyway, your mom will see a number of people. It's great that you can go with her. They will have resp. therapy, speech therapy, occupational therapy, nutrition, equipment people, patient advocate people ( possibly from the local ALS Assn ) and of course the neuro and nurses.

It's a good idea to take a notebook or something to take notes on, because more than likely you'll get a lot of info. Some of it she won't need for a while, and some things might be useful now.

Have you registered your mom with your local ALS Assn and MDA in your area? They both can be a lot of help with questions you may have. I know that they will also help purchase a w/c and a speaking device when the time comes. I don't know the exact particulars on all that, but it's good for you to know.

Roam around on the forum-I'd suggest keeping that notebook handy for us too!
Welcome again, hope this helps a bit,
take good care,
-brenda

 

[Al]

hi Mary. I'm no doctor but the trouble staying awake and short of breath while lying down are pretty good indicators she is not expelling Carbon dioxide well. She needs a Bipap machine. The not wanting to wear dentures could be because she feels she can breathe better without them.

AL.

 

[DgtofTNfan]

Hi Mary,

My dad is 69 and was diagnose (90% sure) last week. We have not been to the multi disciplinary clinic yet, so maybe you will be able to tell me how it goes. :-?

My Dad has started napping during the day in the past month and having trouble sleeping at night. He is getting his bipap today so hopefully this will help as he is retaining carbon dioxide which can contribute to his overall energy level.

If your mom has lost weight, the dentures may not be fitting well and harder to use or she may have some sore spots. The speech therapist at the clinic would be a good one to ask about this. My Dad has lost considerable weight compared to last year and had some adjustments done to his dentures.

I am so sorry you are going through this with your mom. I am right there with you.
Best of health to both our parents!
Dana

 

[topsfan]

Hey everyone, thank you so very much for the encouragement and insight. I hadn't thought of taking a notebook, but did consider borrowing a pocket tape recorder. Perhaps I'll do both. My oldest brother is also going along for the clinic visit. He has not been to any of the doctor appointments, but at present lives with our folks and so he sees first hand what is happening, so I think it will be great having him along. From all I am reading in various places, it seems a large percentage of PALS have the muscle twitching. I've not seen it with Mom myself, but did ask my father and brother about it... both said YES she is, although Mom seems to be in denial about her overall condition. She claims no twitching, that she is moving her legs on purpose.
I've not registered her with the local ALS or MDA, never thought of it. We already have a wheel chair (not power) that was actualy mine, spent 6 months not walking - that's another story for another day. I will register her with them however, as an appropriate bed and I'm certain other equipment would be a great idea.
What REAL questions or things should we ask during our visit? I've not a clue where to begin. Have been trying to study the terminology, getting myself plenty confused.
As for the breathing issues and carbon.... Told my father that part of her sleeping during the day like this is because she is not resting well to begin with and then my own thought process led me to thinking that perhaps her breathing pattern is not up to par... lacking oxygen and too much carbon.
Not sure how she will feel about the bipap - is that something she would only sleep with or use throughout the day? I know... not knowing her exact condition its' hard to say. I'm just not sure if they are something to be used long-term or meant for shorter term use.
I'm trying to keep on top of the medical end of things and Mom seems to be trusting me to do that, so the pressure is on for me to do it right. I phoned Georgetown Univ. today to ask them what I could expect from the appointment. The assistant there said since this is her first visit, would be an evaluation and then he'd decide if e needed anything further and put in the orders. I may not hae posed the question right, but I'm still not certain if any additional testing that needs done would be handled then and there or if we're looking at making appointments and running up and down the road.
Typing all of that jsut made me think... I believe her insurance requires a referral for almost every specialist visit... so I better contact her GP and have them send the referral down so we don't get ourselves in a major insurance coverage bind.
You all mentioned the loss of weight... My mother was a very large woman, our family are all large fraed and bigger than we ought to be... She had been trying to lose weight and was doing so successfully for hte past year to year and a half. Losing nearly 100 pounds in that time. She would not eat breakfast or lunch and onlya small dinner... depriving her herself of way too much. I truly had not given much thought to how that affected her dentures fitting. She only has difficulty with the bottom ones.
When all of this got started, I was concerned for her overall heath because she was not moving as usual, speaking like usual or even acting like herself. She had lost al that weight and was getting around worse than ever before. Walking bent over trouble holding her head up and complaining of shortness of breath, chest pains, etc.
The whole situation was complicated, as we were viewing most of it as side effects of a bad fall she took at work back in May. The doctors did stress tests, blood tests, etc... no results. In December, after I learned she was having difficulty swallowing (which she now says started in Oct/Nov, but didn't tell anyone), we were sent to a neurologist, who ordered blood work and an MRI which she did not get because she was choking too much to ay down for it. The neuro said "bring her back when she's better". I was furious... got the family doc back on it, he referred us to a different neuro who then did a nerve conduction study and forgive me, but I forget the other test name...
He compared the results to a previous study done a couple of months prior and given his overall evaluation of her on that day said the muscle wasting and nerve conditions were very bad and very serious and he made the initial diagnosis of the ALS.
I know it is only opinion... but how much detail should my mother know? I'd love to protect her from it all, but reality is she'll be the one whose body is living it. I just don't want her to be scared too soon if that makes sense.
I'm sorry for rambling on, obviously many thoughts are buzzing about my head at present.
Hugs to you all and thanks again,
Mary

 

[Al]

Hi again Mary. I've been using the Bipap for 4 years just at night or when laying down. Once you get used to it it's a piece of cake.

AL.

 

[topsfan]

Hi Al, You've been so helpful every time I have posted.... have you tried different mask styles for the bipap and liked one better than another... or selected one and stayed with it?

 

[Al]

I've tried a few but stuck with the Ultra Mirage full face mask by Resmed.

AL.