Status
Not open for further replies.

aralvi

New member
Joined
Apr 30, 2015
Messages
4
Reason
CALS
Diagnosis
03/2015
Country
PK
State
Sindh
City
Karachi
Hi, My wife was diagnosed with ALS on 4th March (she is 47). Unfortunately the diagnosis was confirmed by 2 other specialists. I want to get a sense of the rate of progression of her disease as to other PALS. Her first symptoms started in November of last year when she noticed a slight tremor in her right hand. This gradually progressed to a weakness in the legs and inability to get up from a low sitting position in December. By the time of her diagnosis she had significant weakness in her right arm and left leg. Now two months on the weakness has spread to her other arm and leg as well. At the time of diagnosis we were shattered to hear life expectancy prognosis as low as 9 months given how quickly her symptoms set it but were also told this could be way off base and they were wrong 40% of the time at the initial diagnosis phase. Can anyone out there shed some light on this in terms of their experience>
 
I am terribly sorry. Progression is so different for each patient. It does sound like it has moved fast so far. My sister was quite fast ( not as fast as your wife though) in the first 12-18 months but slowed down and is still here almost 4 years after first symptoms
The doctors give their best estimates but as you were told by them are often wrong. Hard as it is we have to take it day by day.
 
I am so sorry to welcome you with this diagnosis. The support here however is amazing and we will do all we can to help you adjust and cope.

If you look back through this section you will find this is a common first question. I know for me it was high in my mind when my Chris was diagnosed. Sadly we cannot give you even a guess because there just isn't any way to tell. Even some who begin with a rapid progression, it can level out after a while, and some who progress slow can just stop breathing one night. That is being very frank about the reality of this disease.

At the end of the day it is common that the death part comes when the ability to breathe is taken. This means progression could be fast in the limbs and cause a huge disability but not end life so quickly.

There are so many other variables that affect the progression such as falls causing severe injury (and some PALS sadly actually die from falling), or aspiration pneumonia hastening things along, or rapid weight loss hastening things too.

So all we can do is take a day at a time and try to anticipate what equipment needs we can put in place to stay ahead a bit.

We have some stickies at the top of the general discussion forum for newly diagnosed and anticipatory planning that may help you think on these things.
 
What we do know about progression is many times there are stages or plateaus when it seems to slow for a period of time. That could be weeks,months, etc. Some people don't experience this at all, some people stay at one level for quite some time.

ALS is a peculiar disease because while certain things happen for most people, the order in which they happen, the severity, the time to move through a loss of function, etc is individual.

Steph
 
>I want to get a sense of the rate of progression of her disease as to other PALS.

like snowflakes, all different ...

like all the others, sorry to meet you here but welcome!

The next weeks, months will be an emotional roller coaster. Try to go with the flow, expect fear, anger, bitterness, and a new awareness of life. I have found that being active here on these forums has helped me in way I cannot explain, but you will see.

before trying miracle cures, etc., ask here, go to alsuntangled dot com.

Lastly, anxiety can be debilitating so beware.

Lastly, lastly DON'T FALL, take vitamins, keep your calorie intake up, and stay away from sick people, especially w/ respiratory problems.

Kind regards and warm welcome,
------

> I do know it is healthier to be thankful for what still works than to resent what doesn't (easier said than done :))



Max - Sunday, May 03, 2015 10:50:56 AM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


.
 
ARALVI: My wife was also fast progressing.
While your wife might not progress quickly, I think it is wise in your case to prepare for a relatively quick progression and death. Spend some time thinking about all the things you'll need to do during the disease--supporting a person who cannot walk, cannot feed themselves, cannot breathe easily, cannot get out of bed--and prepare for her final departure. Make her final months as comfortable as possible. Also remember that you need to consider the survivors. Your family will need to move on after she dies, so prepare for that, as well.
 
Status
Not open for further replies.
Back
Top