JohnW

I’ve learned the FDA advisory committee gave 7 to 2 approval recommendation on Sept 7. Final FDA ruling is Sept 29

<p style=”text-align: left;”>Hello everyone,</p>
I’ve been blessed to be a slow progressor.  Something that keeps me going is my love for Our Lord Jesus.  I pray with my wife we pray to Him everyday.  I offer up my pain and suffering to Him knowing that by by carrying my cross in this world gives me great hope for the world to come.
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Hello Dagmar,

By God’s graces I am a slow progressor  with symptoms in feet and lower legs. I have been lucky to have the same physical therapist for 4 years now. We normally are scheduled for 2 sessions per week. We work on hamstring stretching, range of motion. Core exercise and also balance.  I highly recommend this for those who are able. W…[Read more]

Hello, For those that may want to understand more about the disease progression, the ALS therapeutic Development Institute has a program called Precision Medicine Program which is mainly a bio marker study they conduct by gathering fluids (blood,csf). But one of the benefits for me has been to monitor by range of motion vs. my self assessed ALSFRS…[Read more]

Hi Rony
You might find that a muscle biopsy where your muscle function is reduced to help make the determibation. That was instrumental for me getting the ALS diagnosis after 2 years of EMG and othet tests.
Best Wishes
John

Hello Maya
A good way to track your Alsfrs is with the ALS therapy institute’s Precision Medicine Program. You can look it up then enroll. They also measure limb activity with small tracking devices you strap onto wrists and ankles. Take a look and see what you think…ive been doing tbis for over two years now and find it very helpful.