JohnW replied to the topic Fear and ALS in the forum Living With ALS 1 month, 3 weeks ago
I personally have turned to Our Lord Jesus and the gospel messages. With Him you can overcome anything. Blessings to you and you family.
JohnW replied to the topic Have you had physical therapy sessions for your ALS? in the forum Living With ALS 3 months, 1 week ago
<p style=”text-align: left;”>Patty</p>
<p style=”text-align: left;”>As for getting the Rx from primary doc or neurologist I would consult neurologist first. In my case either of these agreed on PT so both would do it.</p>
As for the therapist I first consulted an ALS trained pt for learning to walk more efficiently with an AFO (brace on my lower…[Read more]
JohnW replied to the topic What's the latest news on AMX0035? in the forum Research Topics 6 months, 2 weeks ago
I’ve learned the FDA advisory committee gave 7 to 2 approval recommendation on Sept 7. Final FDA ruling is Sept 29
JohnW replied to the topic "How Do You Navigate Difficult Topics Like Mortality?" in the forum Living With ALS 7 months, 2 weeks ago
<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.
<p st…[Read more]
JohnW replied to the topic Have you had physical therapy sessions for your ALS? in the forum Living With ALS 8 months, 2 weeks ago
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]
JohnW replied to the topic What Research Do You Think Should Be Targeted? in the forum Research Topics 10 months, 1 week ago
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]
JohnW replied to the topic Is NF-L in CSF Lumbal Puncture a reliable BioMarker? in the forum Diagnosis Information and General Questions 1 year, 2 months ago
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.
JohnW replied to the topic Disease Progression in the forum Living With ALS 1 year, 2 months ago
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.
JohnW posted a new activity comment 1 year, 8 months ago
JohnW became a registered member 1 year, 8 months ago
Welcome to the forum! I am one of the forum moderators and a person living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions by typing a…[Read more]
Hello John, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]