[Jonathan L Maddock]

My L4-L5 stenosis was in fact concurrent with the first signs of ALS. I did have pain in my left foot along with pins & needles feeling, definetly caused by the stenosis. The lisping and slurring had nothing to do with the stenosis! When that started, no one else could hear it except for me and my wife (January 2019, one year ago).

I went downhill skiing January 2019 and felt out of control on my left leg. I still thought that the cause was the stenosis, which I’m sure part of it was, but certainly not all of it.

See my post in this topic, dated December 24. It will explain the time line.

So, now one year and four months from the first signs of ALS, I use an AFO on my left leg, and speak much more slowly and with a lisp.  I’m turning 65 in March, and had intended to work until I was 70. Maybe I still will, but I’ll just have to see how I do. I am looking forward to new medicines and therapies in the upcoming years.

 

[Jonathan L Maddock]

Prior to symptoms & diagnosis I was running 4 miles 3 to 4 times a week. I have a slow progression ALS, and I still power walk 2+ miles several days a week (I use an AFO on one leg), and 1/2 hour of stretching each day. I have an elliptical trainer (owned prior to diagnosis), but I’d rather walk outside until I can’t. Eventually I’ll get a recumbent exercise bike.

I’ve been very active my whole life, and I’ll find whatever ways I can to be as active as I can at that moment in time.

Peace and Love.

 

Jon

[Jonathan L Maddock]

In September of 2018 I was getting ready for a 5K run for charity, and noticed that I no longer had the stamina I had only a few weeks ago. Also noticed a different sound to my gait as one foot slapped down instead of rolling from heel to toe. By Christmas I had slightly slurred speech, although mostly imperceptible to those around me.

I went to an orthopedist in December & January & had a back MRI. I went to my GP in January and asked him for a head MRI explaining my speech issue, which he couldn’t even hear.

I did have a stenosis at L4-L5, and did go to a back specialist culminating with a L4-L5 lapindectomy on June 6, 2019. My speech was still slightly slurred.

Appointment with a neurologist was in April of 2019 (3 month wait to get an appointment!) He set up an appointment for an EMG the end of June, but it had to be pushed to the end of July due to recovery from my back operation.

The EMG on July 30th, and the neurologist said I had ALS, but also told me that I needed to have a second diagnosis. Eight days later I was at the Healey Clinic for ALS at Massachusetts General Hospital.

I immediately was prescribed Riluzole & Neudexta. Also Radicava, but there was a month delay for that while my health insurance decided to approve it.

I’ve had three meetings over four months with my neurologist, and many correspondences  staff at MGH. They are wonderful.

My last meeting with my neurologist, she said that with three data points she can now confirm that I am a slow progressor. Thank God! I am looking forward to participating clinical trials.

So, I am enthusiastic to become a part of the miracle. God working through the hands and minds of the physicians and clinicians and the myriad of support staff (bio-statisticians,, for one).

I am optimistic.

 

Jon

[Jonathan L Maddock]

Yes, I have. I always have, for as long as my 64 years that I can remember.

The last time I had the flu was so long ago (decades!), that I truly don’t remember the specific event.

 

Jon

[Jonathan L Maddock]

Yes, I have! I can think of no good reason not to.

 

Jon

[Jonathan L Maddock]

Oh, and to your question, I had some notable leg weakness prior to the twtching.

[Jonathan L Maddock]

I had a somewhat similar scenario, including an L4-L5 laminectomy June 6 2019, almost 2 months prior to my ALS diagnosis On July 29.

Same day as the diagnosis, I started to have fasciculations in my thighs. Coincidental, I’m sure.

Foot slap had started mildly in Sept of 2018. Some dysarthria in January of 2019. I did have pain & pins & needles in my foot at same time. So I had both issues at the concurrently (I think).

Since then, my twitching has subsided a bit, about the same time I started with Radicava.

[Jonathan L Maddock]

My neurologist is at MGH, and as of our last Tuesday’s meeting she tells me that I’m a great candidate for this platform trial. I am thrilled!! She’s recommending me to Judy Carey.

If you’re interested, there is a link in the MGH announcement to reach out to Judy. “Carey, Judith R.,R.N.” <[email protected]>

I truly believe that within 5-8 years there will be at least a couple of new FDA approved and much more impactful medications to combat ALS. Maybe sooner.

 

[Jonathan L Maddock]

When I started on Radicava, I noticed a decrease in fasciculations and intensity. An unexpected benefit for me.