My sister

[LSARIOL]

Kari,

I am new to this site as well. My sister starting having issues in April 2016 and was diagnosed in November 2016 with Progressive ALS. She is deteriorating very quickly. She started with left knee issues and had knee issues in the past so figured it was a flare up. Then she was having left hip issues and figured it was due to walking differently due to the left knee issue. She had several MRI's, a couple spinal taps, several doctors and then the EMG which in November confirmed the ALS diagnosis.

Since April she can not use her left hand, cannot lift her left arm over her head, has a left foot drop, went from walking to a cane, to a walker and now due to fatigue sometimes has to use the wheel chair in the house. Her right hand has started to fail. She needs help with most daily functions due to the limited use of her hands. This is all since April. Prior to April she was working a full time job, walking, doing things and now she leaves the house for doctor appointment and is mostly sitting in a lift chair.

This disease is moving incredibly fast for her. We can barely keep up! Her breathing and voice have changed as well. We get one thing handled and another comes up. I share just because of the quick way this disease is taking my sister. She is only 43 years old! I hope for you and your family that it is not ALS! Good luck.

I would like to hear from anyone who has seen such a quick progression. We have a hard time gauging things. The support groups we have attended have been attended by PALS that have not progressed so quickly which is great! We just wonder why this is all happening so quickly. We hear about plateaus and remissions but have not seen that with my sister.

Thank you,

Lisa

 

[lgelb]

Lisa,
I moved your response to Kari to its own thread so more people would see it. Unfortunately, in some people progression is faster. Welcome -- feel free to vent, ask questions and respond to others at any time.

Best,
Laurie

 

[KimT]

There is no predicting how fast this disease goes. At first, my doctor told me I was the slowest progression he had ever seen but I fell in September and that seemed to speed everything up.

Focus on making her comfortable. That includes adequate hydration, good nutrition (by mouth or tube), comfort in breathing (BiPap monitoring), pain management, and lots of love.

 

[affected]

Very sorry Lisa - there really aren't any rules to this awful disease.

My husband was gone 11 months after diagnosis, and I was running to keep up all that time!

We have lots of members here who are in their second and third year, and some far longer.

We will support you as best we can, that we can say!

 

[soonerwife]

So sorry to hear about your sister's dx. You have found a great place for support.