The way Progression Works

[wewillbeatthis]

Hello my new second family ,

I have a question on progression?

If someone has limb onset it will normally go into another limb and hit all limbs before affecting the ability to eat, speak, or breath. Does anyone know if this is in fact the normal course?

OK OK another question?

As for the platue stage that several people get too. Does it seem resonible to say that once this disease effects a new limb or part of the body it will do it's thing and then lay low and go someplace else, hang low go somplace else, so on and so forth? Or will it hang low in that one place sit for awhile and then continue to do it's thing in that place?

I ask all of this for this reason: Dad has been working out and in fact he is able to do things now that he could not do a year ago. I don't want to tell him this for it will confuse him but I don't understand. At PT the other day the PT had him lay on a weight machine and with no weight he had to push him self up and down he could not do this last year. He told me last year that when in the shower he would have to get out both legs and dry off and that he can no longer put his leg on the side of the tub and dry one by one. Yesterday he told me that he just dried one by one and balenced and stood one leg in the shower. Of cousre what did I say that is great day but please be careful... I am so confused what is going on?

Jen :roll:

 

[trisha p]

Hi Jen,

Love your photo with "I believe". It made me smile.

I am not sure if I can answer your questions completely but I can tell you what my brother has experienced in his progression. I'll start though in saying that the neuro told him he had an unusual progression in the first place because he experienced equal weakness in both hands/biceps at the exact same time, which usually does not happen often in ALS. However, I can tell you that by the time he started noticing weakness in his arms to the time he noticed weakness in his shoulders was about a year. By the time his shoulders were affected, he also lost most of the strength in his abdominals and chest. From what I understand, your breathing is affected by the weakness in the chest muscles primarily (and diaphram) and so when these weaken to a certain point, then one finds it harder to breathe etc. Dwain is to the point where he does not have the right amount of force to blow his nose properly...

Anyway, Dwain's legs were actually getting stronger before Christmas when he began his downhill skiing with disabled skiers of Alberta BUT he skied to the point of exhaustion, which is discouraged by his neuro. Exercise can be good for ALS patients in terms of keeping the muscles working but the exercise should not be done to the point of exhaustion. Dwain's upper body seems to have hit a plateau (inlcuding his chest muscles thankfully) but his legs have now taken a gradual decline over the last 4 months. He now needs help climbing stairs (cannot do it at all by himself).

The one thing I've noticed on this forum is that everyone's progression really does seem different both in terms of rate and what gets affected next. Some plateau, some do not, some for longer periods of time. It all depends on one's individual make up I suppose. For Dwain, it hit his hands and arms at the same time and then his legs both at the same time. BUT like I said, each case is different. That's what makes this so confusing and frustrating because there is no way we can predict what is next.

I can't explain what's happening for your Dad but it sounds like whatever is happening is having positive results for him. Just make sure he doesn't do anything to extremes or to the point of exhaustion. But it sounds encouraging that he seems to have hit a plateau. Pray that it continues as will I.

God Bless!
Trish

 

[wewillbeatthis]

Trish,

Thanks for your response. I am sorry to hear that your brother is going through all of this as well. Your are so right in how this disease is so confusing. Everyone is different.... It seems from what you have written that your brother has been dealing with this for a couple of years now?

I am going to stay positive and help my dad to continue on this positive path and perhaps it will stay at this point for years to come and never progress or progress very very slow. I will continue to pray for all of the people on this board.... I pray all them time that a cure is found and if not a cure then a way to stop this horrible disease from progressing....

Keep the faith and know that GOD is always watching over us.

Jen

 

[john McCarron]

When I was first diagnosed, the neurologist offered to me by way of consolation the fact “ MND (ALS) is extremely variable and will affect each person differently” During my journey I have found this to be, oh so true . However, there are some forms of ALS which are aggressive and the rate of progression of these types can be rapid.

Strangely, I was a right handed person, but it is now my left hand which is stronger. Other than this my limbs are wasting similarly. The saving grace is that I can still drink a pint or two.

I see Tricia’s post, mentions breathing and muscle loss in regard to the diaphragm. This is quite involved and there was a very good post by a lady, who if I remember correctly looked after her partner in a remote part of Canada. I have searched the archives and unfortunately I cannot find it! The post in question covers a number of points which had taken me months to find out for myself. If anybody knows this article perhaps they will direct you.

Leaving aside invasive breathing, there can be a need for non-invasive and its worth discussing with your doctor. My very own brief simplistic understanding:-

When we breathe in air, its major constituent is oxygen which enters via the lungs to the blood stream. We expel waste air as mostly Co2. At night when enter the REM stage of sleep our breathing becomes slower and shallower, now if our respiratory muscles are considerable weaker and we do not expel all the Co2, it renters the blood stream and we get a build up. A build up of Co2 can cause headaches in the morning, tiredness, falling a sleep for no apparent reason, lethargy and a lack of concentration. A good indication (don’t ask why) is sweaty hands. There is a machine that a lot of us use (myself included) to overcome this problem and you will see it referred to it in the various posts on the forum as BIPAP etc It is worth pointing out, that it is normal to have some build up of CO2 and some people can tolerate some very high levels i.e. smokers etc. However, rapid high fluctuation of CO2 over a short period is of concern. For me the machine is simply a quality of life issue and that’s all. On the down side:
When I am wearing the mask my kids think it the funniest thing they have ever seen when they burst into the bedroom. But worse of all, I wish they would stop calling me ‘Darth Vader’.

Hope this helps