Bill Corrigan

PTC-857, CARDINALS. I might participate in it, but I can’t start Relyvrio if I do. So if I started tomorrow, it would be 8 months before I could start Relyvrio. I am on Radacava ORS for a month or so now, and have a prescription for Relyvrio going through the Insurance rigamarole right now. I do think the science checks out on that one. So do I d…[Read more]

Sorry for the late reply, I have a TiLite AreoZ. Insurance paid for it. I just added knobby wheels! Looking forward to getting into more rugged terrain! Enjoy!

I have done 2 international trips with family since my diagnosis 1 year ago. I also did a cross country drive with my adulty daughter and a 4 hour flight by myself (including driving to the airport long term parking and shuttle to the terminal, with a manual wheelchair.  This is a typical travel year for me. Next trip is the FLA keys with the…[Read more]

I have done 2 international trips with family since my diagnosis 1 year ago. I also did a cross country drive with my adulty daughter and a 4 hour flight by myself (including driving to the airport long term parking and shuttle to the terminal, with a manual wheelchair.  This is a typical travel year for me. Next trip is the FLA keys with the…[Read more]

I skipped the scooters altogether and went for a manual wheelchair with a freewheel attachment and a smart drive. I have full use of my arms and chest still.
with the free wheel I can go on all kinds of terrain. I leave it in my car so I have it when I need it.
The smart drive is awesome! It “pushes” the chair and I can adjust how much it ass…[Read more]

also get a toilator for your toilet. The plumber has to install it. Gives you four inches of additional height.

ive been wearing my afos for 9 months now as my legs continue to get weak. I can’t walk anymore. I can muscle myself around with arm shoulder strength as so nothing of ALS above my hips.

my shins get sore from foot drop. The AFOs h…[Read more]

I’m 9 months into my diagnosis and while the way I do my activities has changed, my goal for them and execution has not. I kept my basic running training program and changed it from ambulatory to wheelchair based. I just completed the London Marathon in about 7 hours, 50 minutes. After only having the chair a week! I am now completing my ‘off…[Read more]

Definitely not a hero; don’t feel like a survivor either. Maybe a warrior. But I think I was that before. I mean, I did 12 marathons before my diagnosis and you need a warrior attitude to do battle with pavement and gravity. If you want to win, you then battle the other racers as well. I’ve just kept that up.

What’s new is I am now gracious.…[Read more]

My sympathies to you for the loss of your husband/father. I hope he’s sailing with full wind in the sails, plenty of sunshine and just enough breaks to make the time fun!

Bill

Sleeping is the toughest aspect of this for me. My legs are very weak. The weakness has  slowly but steadily progressed. I can use a walker but it’s tough. At night, everything below my hips is dead weight. I turn myself by grabbing the bed board and strong arm myself. My legs get cramps every time I move at night. I tried Baclophen and it didn’t…[Read more]

I drove from Austin, TX to Cleveland OH, and in my Subaru Outback I could put my recumbent tricycle. The other great thing I did was get hand controls for brake & gas installed, so I don’t have to rely on my legs and feet for driving. Great adaptation!

This week, my OT loaned me a recumbent tricycle! I love it because I can go out on my urban street and exercise and use my weak legs as much as they can put out! Now I have to figure out how to walk the dogs with it!

I got carbon fiber AFOs from Hagar prescribed by my neurologist and they are like ski boots. I didn’t know I might have options as that was earlier and now I know to research, ask and be stern. I have very weak legs now, so I couldn’t play pickle ball, so they are fine, they keep me upright.
I say get what you need now so you can do the things you…[Read more]

My biggest adjustment has been how difficult it is to get around. My diagnosis was Groundhogs day this year and I have weak feet and legs. No symptoms above my hips. Putting on clothes is hard. I miss running, but I am participating in wheelchair sports to get my excitement. I got a stairlift and I don’t miss climbing up stairs!

Thanks Dagmar. I’m trying to listen to my body and so far, other than weakness in my lower limbs, It just seems right to keep a “hard day hard, easy day easy” exercise/training regimen. The goals are what keep me from feeling sorry for myself when daily chores are so hard.

I’m transitioning from running marathons to (hopefully) racing in wheelchairs, then hand cycles*. I was walking 3 times a week, 3-4 miles each time. I plan to give that up. I am now going to a track 3 times a week and pushing the racing chair. I also go to PT and will be adding forward hand cranking for 10-20 minutes, and lying-down flat feet…[Read more]

I was diagnosed 3 months ago, and I mostly experience pain as a cramp or a pull of a muscle. Primarily in my legs where my condition is the worst. It always associated with movement, such as contracting or expanding a muscle.
If I feel other pain, it is soreness, from the times I over exert myself, which I try not to do.

I don’t feel acute…[Read more]

Congratulations Lisa! How exiting and great to hear the producers are after authenticity. May everything go smoothly for you.