[JohnW]

No on 4 th Corona jab 4 me. Tested negative since 3rd in 2022.  Complictaions after that resulted. After sitting in an ER for 3 days still not getting 4th shot. I still have something consuming my white cells. Im 67 but for babies i’d look for safe alternatives.

[JohnW]

Amanda
Thankyou for your bravery and inspiring story.

I beleive those who have had the luxury of accumulating free hotel nights/ airline miles may donate them to you

[JohnW]

Dagmar and Team

Ive had my Als and seizures prior to receiving Pfizer Injections 1 and 2

But what happened after that seems very mysterious.  Approximately 2 years my weight went up 17 pounds in 3 weeks and blood pressure previously was normal Then the top number 200 over 112. I was rushed to the hospital and had to have a pericardial efusion.   Doctors said i was saved by my high blood pressure.  Doctors said  i   would have been dead within 24 to 36 hours.  I am most thankful for my wife is a  nurse and there is a God who allowed me to continue my fight for us

l7

[JohnW]

Ive had my Aillard carbon fiber for about 4 years now.  My ALS started in lower extremeties particularly the calf and moving up the hamstrings.  Shoes that were recommended were Kiziks but seems that no one has them and you buy them online only. I beleive in trying before buying So we thought of my requirements and just thought we check a sneaker store first.  I found Asics work pretty well as they have removable inner soles and the AFO slips in pretty easily  then you just put the inner sole back in. Works well for me if you still have upper arm or hand strength.  Also i recommend longer shoe laces maybe 72 inches since they are easier to tie.

Definittely my AFO has extended my walking ability.

[JohnW]

All

This avenue is being explored and may help in understanding of what we should or should not expect to find in our gut microbiome. This reference is in the NIH clinical trials database.  https://clinicaltrials.gov/ct2/show/NCT04150809

God bless to all for i too am waiting a solution.

 

[JohnW]

Yes i too am blessed as a slow progresser.  Please dont give up hope.  I look at it as i do what i can with tools God gave me.  So i participate in studies to try to improve upon capabilities for earlier diagnosis.

Im hoping this gives you all a better chance to get into studies earlier.

God Bless You!

[JohnW]

Hello

My first symptoms started as not being able to walk normally. I found it difficult keeping pace with others.  I was observed as waking on my heels and not propelling forward normally.  Worked with a pt to try correcting it until she said I needed to seek help.  Started with Neuro surgeon then a local physiatrist then he sent me to one neurologist who didn’t admit it was ALS .  So after the third neurologist finally told me it was ALS.  Very long journey to get there.  Possibly 6 years but I am very blessed to be a slow progression.  I continue praying for all of you. You are saints.

[JohnW]

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]

<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 leg) then he worked up a regimen that 8 could work with my local therapist who was working previously with me.

I agree that pt has been most helpful for me doing things for balance range of motion exercise and stretching. No over exertion of muscles tho. Perhaps consult with another neurologist to see why these types of muscle use activities would not be helpful for you.

I hope this helps you.

 
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[JohnW]

<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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[JohnW]

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. With the assistance of a cane and AFO I still am able to walk. I attribute  this to the PT program.  I would also like to point  out to those on medicare the PT sessions for PALS is covered when using the KX modifier on the billing. I was private pay until I found out about this billing. I hope this is helpful for those wondering if PT is beneficial.

 

[JohnW]

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 score. I should also mention that AlsTdi ships actigraph trackers you wear on wrists And ankles to do range of motion exercises which you conduct at various times. At the end of the week I mail the trackers back to them and they upload the tracer data so I can see it on my portal   They also provide me with results of the many tests the do on my blood which I give to my neurologist.

Hope this is helpful!

John

 

 

[JohnW]

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

[JohnW]

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.

[JohnW]

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