Status
Not open for further replies.

cervus

Senior member
Joined
Mar 18, 2011
Messages
935
Reason
Lost a loved one
Diagnosis
11/2010
Country
CA
State
AB
City
Leduc County
My husband, Bob, was diagnosed with ALS on 08 November, 2010. He'd had symptoms for 3 1/2 prior to diagnosis. He had limb onset. His FVC and peak cough flow in January was 70% and 440 litres/minute. His FVC is now 43% (give or take with poor lip seal), peak cough flow is 120 now. He uses a BiPAP at night and if he naps during the day. He's been in a wheel chair since December with some use left in his right arm. From experience on this forum, does anybody know what this means? Our ALS Clinic team at the U of A don't seem to want to predict anything and I know they can't, as is the same generally speaking. Yes, everybody is different, etc. BUT....it's difficult. I don't know if I want to know or what it is that I'm asking.....but I know people here understand. Any hints as to where we are? His progression since last July has been very rapid, even according to the team. Thanks!
 
What is it that you really want to know? Your ALS clinic team has given you their answer. From your description of things, I see no reason to disagree with them.

If you want some kind of comparison with the observed norms for PALS over the years, you might want to look up and fill out an ALSFRS-R survey sheet and get a current score for your husband. Here's a place online where you can do that:

ALS Functional Rating Scale

Don't know what the red, green, and blue lines mean on the score graph, but the black dots are previous scores in the comparison data. The darker the area around the X for your husband's score, the more people had scores like your husband at a similar time in their course of the disease.
 
Sometimes this sorry disease plateaus and that could happen with your husband. My husband has "spurts" and then it levels off for a while. So, you are right: "everybody is different" There is no way to know.
 
Hi trfogey and brooksea. Thanks for your posts. I did the ALSFRS "test" and Bob scored 10. He was one of the very few right at the bottom of the chart! Not so good. Brooksea...where is your husband in the illness? I'm glad your husband plateaus. I don't think Bob has plateaued at any point yet but I do know some days are better than others. That's the case by the hour too sometimes. He can be "strong" and help to stand if he needs changing but will be weak later trying to do the same thing. Just one day at a time. We've learned that a long time ago.
 
(Thanks for that link, Allen.)

My husband is a 13 and a 19, depending on which scale you use. We can barely understand him and he has to use alternative forms of communication. He has a PWC that he uses intermittently. He uses a feeding tube, but can eat some soft foods. He uses a BiPap at night. He cannot use his hands to write or pick up things and his arm strength is almost completely gone. He was diagnosed when he was 47.
 
Thanks very much Al! Very helpful link.
 
I think Bob was a 14 on the ALFRS and then a 10 on the ALFRS-R. Bob uses his IPad and letter board and sometimes he spells things out on any surface that's close to him (mostly his thigh) to communicate. He lost his ability to speak about a month ago. Before that we could mostly understand what he said but then his speech became completely unintelligible. We do have an eye-gaze device that he's practiced with but he's not using it yet. I know that when he needs it what little actual communication we have now will slow even more. It's funny how if you're with somebody everyday, things seem to decline but we don't notice it as much until that function has completely diminished. He still has his voice which makes us both so happy....I do miss having long conversations with him or to just be able to ask him his thoughts or opinions on anything. He was a professor for his adult life and taught me so much. He taught a lot of people a lot of things. But again, we're grateful for everyday and I try not to focus on what he's lost but more on what we still have and also for the fact that he is still the person I've loved more and more for over 30 years. That is a blessing.
 
CJ, the ALSFRS-R score is the one most ALS clinics and researchers are using these days. It gives more detail (and more weight) to the various respiratory issues we PALS face. My score is about the same as your husband's.
 
You're right to look at the respiration data. Although the medics won't venture a guess, and the literature says each case is different, I see reports and research that says each patient's case is very linear, and follows the pulmonary functions.

After each doctor visit, I pull the doc aside and say quietly, very simply: "I have to plan for my family. How long?" Each one has given a quick simple answer in private. Maybe it's because, during the office visit, I don't say much and I come off as being a very practical, calm person--so they know that I'll accept a quick, unvarnished answer.

Good luck.
 
My husband's scores were a 6 and 9. Scary. I thought he would do better. Okay, maybe I just hoped he would do better. . .
 
The site, patients like me, allows you to chart your score over time and shows the bands for fastest 10%, slowest 10%, fastest 25%, etc. You do need to have more than one data point (calculated at different points in time) to establish your progression curve however. Mine has followed exactly the progression curve expected for my rate of progression.

I've also read suggestions that ALS follows a steady decline curve. Mine so far has.
 
Thank you for the new advice, comments and suggestions. Last Friday night we were at the dining table with friends and Bob started having these full body spasms. I took him to our bedroom so he could tilt his chair and stretch and within an hour he had 4 more spasms. These spasms that take over the whole body are new to us. They lasted maybe 30 seconds and were painful. He's on Baclofen, etc. He had rapid breathing all night which only settled at around 7 the next morning. The breathing was shallow but he wasn't gasping for air. A bit frightening. The next day his neck was kinked to the point where he couldn't move it at all. Today he's much better. Anyway, just thought I'd share. Anybody have these weird episodes?
 
My husband has never had episodes like that. You must have been so scared!
 
I was scared. I don't know if this is related or not but since around that time he seems to be coughing more through the night sometimes but more in the early hours of the morning. A little congested. I think this happens in the later stages - build up of fluid which will then sometimes cause pneumonia. We're using the lung inflating device a bit more now. Weird that it started simultaneously.
 
Never heard of full body spasms related to ALS. Call your specialist.
 
Status
Not open for further replies.
Back
Top