New PALS

[jonathanguest61]

Greetings! I got my diagnosis on 7/21/23. On 8/4/23, I had my 62nd birthday and retired as I no longer had the stamina to run complex projects and needed to focus on my health. First symptom was a dropped left foot about 1 year earlier. I assumed that was a side effect of having knee surgery 6 month prior. How wrong I was ! Progressively my left leg lost its strength such that I could not do squats or even walk more than a block. Again, I assumed it was a side effect of the surgery and the fact that I was sitting at a desk for 9 to 10 hours a day. How wrong I was ! In May, my wife persuaded me to go see our Family Practitioner. After seeing me walk he performed a basic neuro and recommended that I see a Neurologist. 10 days later I had full exam, followed by an EMG on the legs, then an MRI on my lumbar region, then an upper body EMG (spine, arms, hands, neck)....and so I am now a member of PALS.

I have read so many inspiring stories from other PALS. The community is strong, and the wealth of knowledge/ experience is remarkable. I am also impressed by the amount of trials and research that is ongoing, and that gives me hope.

Thank you.

 

[lgelb]

Welcome, Jonathan, while sorry to hear of your diagnosis. There are certainly more treatments available against disease progression and symptoms than ever before.

We'll support you however we can -- ask us anything.

Best,
Laurie

 

[Clearwater AL]

Jonathan, being relatively close to the huge Chicago area should have
you available to excellent ALS clinics should you decide to participate.

It's hard for me to welcome someone to ALS... but glad you found this
forum.

 

[Jhettinger]

greetings from PALS with 7.5 years since dx.

1 record your voice now do not procrastinate
2 get a team together
3 travel the world now
4 use it or lose it
5 renovate your bathroom
6 read everything on ALS
7 do not fall down
8 did I say travel ?

peace

 

[jonathanguest61]

Thank you all for your warm welcome.
J.Hettinger....thank you for your service and the list of things to do.

1 record your voice now do not procrastinate........will do
2 get a team together......starting my ALS Clinic in early October
3 travel the world now.......done that during vacations and for work (Now retired)..Europe,Middle East, South ASIA
4 use it or lose it....agreed
5 renovate your bathroom........agreed
6 read everything on ALS........started, reading about trials, forums, YouTube etc...
7 do not fall down.......yes, not a good idea.
8 did I say travel ?.......

 

[Jhettinger]

many PALS had success with trials , I did not , it actually set me back

9 every time I went to a hospital it set me back , I had to fight them to let me get out of bed and walk.

 

[KimT]

So sorry to welcome you but glad you found a forum.

I think what took my mind of the disease is finding purpose. Of course, purpose changes when progression happens. I've always been a helper sort of person so helping others with taxes and insurance gave me something to do. In the earlier years, I helped people in my condo set up their computer systems.

Yes, it's never too early to remodel your bathroom. If you do a search, you will find lots of ideas.

Two things I got very early was a bidet toilet seat and a lift chair.

I was too old for most of the trials. Now I've had ALS for too long. I did volunteer for periodic EMGs as part of Mayo's training program.

Also, get genetic testing. I know of two people with ALS who found out they had SOD1 and there is a new drug for that variant.

Best wishes.

 

[monique92760]

My official diagnosis happened on your birthday. (I will be 63 on the 27th of this month) my presentation was right foot drop. I assumed, incorrectly, I had a lumbar nerve issue. I had the MRI's you did followed by the nerve studies. I am fortunate to live only 1 hour away from the ALS clinic in Winston-Salem, NC. I immediately went into "organize" mode. It's all hands on deck with my family right now. Bathroom reno discussed and planned. Door threshold ramps have been ordered. An upright walker with wheels has been purchased.(which really helps at the end of the day when my legs feel so weak) A friend donated a small, motorized scooter. (I've ordered a tailgate carrier to transport it.) Grab bars have been installed by the toilets. I immediately got on Riluzole. Working on getting on the other 2, "R" named, approved ALS drugs. Checked out the UntangleALS site to check out some studies. (Found out I didn't find the cure for ALS just because THC gummies made my legs feel so much better. It's not a cure but it sure helps my muscles calm down!) This may seem a bit much for others newly diagnosed but I want to maximize my ability to control my world as long as I have the ability. It sounds as if this disease is unpredictable from what others have said and I have no reason to doubt them. Being proactive = calmness in my new reality.