Positive news

[Dougly]

We encounter so much negativity in live with ALS than I thought I would share something positive that has happened with me. At my last visit with my specialist, she told me that I am experiencing what very rarely occurs in ALS and that is an arrestment in a progression of the disease. I have been living with ALS since 2000. I am essentially quadriplegic (very little movement from the neck down) and my lung volume test is at 47%. But this has not changed at all in the past three or four years. Things could change in a heartbeat I know, but this certainly gives hope. Hope that we rarely hear of in ALS.

 

[brooksea]

That's fantastic news! I hope you continue to plateau like this!

 

[BLPhill]

Dougly,

Greaaaaaat News! I am hoping that you remain the same, no progression! I also want to know " how'd you do that".:razz:

 

[Blackpool]

Great news and hope for others.

 

[Dougly]

My specialist puts it this way "it is due to my positive proactive approach to the way the disease presented itself in my body". I was presented with degenerating motor neurons at the base of my brain. This caused me to progressively lose the use of my left leg that my right leg and my left arm and then my right arm. My lung volume progressively became weaker as well finally going down to 47%. I was always warned not to overdo exercise but to concentrate our range of motion exercises. But seeing my body deteriorating so rapidly in those first four years got me determined to try and do something and I got my specialist to give me a note to go into the warm salt water pool at our local mental hospital. There I was able to exercise freely. For me anyways that proactive approach has really helped me. But I must point out that my presentation of the disease was quite unique in the first place. I have facsiculations on my tongue but nowhere else on my body. It was fully expected that my tongue would shrivel and that I would soon be having facsiculations down my body, but fortunately that has not occurred. Is it a PLS presentation? My specialist agrees it is accept that the facsiculations on my tongue indicate ALS. I also lost the use of my limbs very rapidly more like in ALS. Also my lung volume has decreased which I don't think is supposed to happen with PLS.

 

[Lorie]

Wonderful Doug

It is always good to here from PALS that have out lived the NORM. I am sure you have a positive ATTITUDE! That goes a long way. You are not a Give Upper!
I have one PALS friend that has had ALS now for almost 26 years. Way to go!

Lorie

 

[misty]

Wow,

You have a strong faith and i really admire that... thanks for bringing positivity to this forum...