Status
Not open for further replies.
I'm so sorry you've had to join us. This site is a good resource for all the questions you'll have or just to commiserate

UCI has a study that is just starting up for NP001 that we are trying to get into. Since you are already there you might want to look into it.
 
The good part is we did not spend a bunch of time in limbo, the tough part I think is the power of the shock factor.
O' yea... When the neurologist first suggested my wife had ALS after only two 15 minute meetings, I thought he was a quack. I wanted to punch him in the face. When his diagnosis turned out to be correct, I felt conflicted. Part of me wanted to say, "Thank you for the quick and accurate diagnosis.". Another part of me still wanted to punch him in the face.

Of course I wouldn't ever actually punch anyone in the face. It's just a metaphor for how insanely upset I felt at the time. I have nothing but love for everyone at this point in my life.

Nikki is spot on with the leg braces/afo's thing. They help so much so if your wife does not have them please look into them. I am very sorry this happened to you, but very glad you have found us. AS Nuts says welcome home.
I wanted to PM (private message) ♥ Nikki J about her comment concerning the AFOs and another important question I had for her. However, I think the ability to PM someone is only for people who subscribe. Please correct me if I'm wrong about that.

Concerning AFOs... Yes, my wife actually has four devices to prop up her drop foot. Ironically, the one she likes the least is her fancy Trulife Matrix Max 2 carbon fiber AFO. Her favorite is this $16 one from eBay:

<Commercial link deleted. Try a photo instead. --Mod>

The thing she likes best about it is you can wear it without shoes. Also, it's easy and quick to put on. I like how the heel is open so it doesn't wear out as quickly. If she was still walking or running, I'm sure the carbon fiber one would be the way to go. At this point, though, she just needs to keep her foot up while making her way to the bathroom using the rollator. For everything else, we use the wheel chair.
 
UCI has a study that is just starting up for NP001 that we are trying to get into. Since you are already there you might want to look into it.

Thanks for the tip. The "principal Investigator" at UCI is the neurologist my wife and I saw the day of her official diagnosis. (Dr. Goyal) The study looks interesting but I'm still on the fence about clinical trials. My wife and I want to do our part to help find a cure for the disease. However, I'm not real keen on the idea of injecting my wife with some chemical to determine the chemical's safety. You know what I mean...?
 
FYI, the ability to PM someone is based on how many times you have posted, not subscribing.

Also, any drug formally trialed in PALS (or those w/ any other disease) has to have been previously tested in healthy volunteers to establish safety. That does not mean it won't worsen progression, as has happened a couple of times, but at that point, its human safety isn't an issue overall.
 
I totally understand about not wantOmg to participate in trials. This one has already gone through some rounds safety testing and some PALS had really promising results though, so that's why we are keen to get into it
 
Oh my goodness, I feel for you. My husband has it. So so very painful, I know. I wish I could help you both.
 
I will be praying for you both!!!
 
Just want to say how very sorry I am that your wife has received this diagnosis, but also say welcome to a community I've found essential in caring for my husband (PALS). Others have given good and timely advice to you here, so I won't repeat. Just glad you're here and not facing this thing alone.
 
I'll never forget the date (June 21st.) the doctor told me mom had ALS, I thought I'd throw up. I didn't say anything to her or my dad, only my siblings, until we had a second opinion. A week later and with another sister there for support, we got a second opinion which only confirmed her diagnosis. I'll never forget the look in my parent's faces as my sister and I translated what was being said and what was to come. We seemed to walk in a cloud, in shock for a while. But like many have said above, the shock will wear off.

Sorry to welcome you here, but glad you found this group where you'll find a ton of info, encouragement, understanding and support as you walk this journey with your wife. You've found a treasure here.

-Erika
 
Welcome to the forum. You will receive a ton of support and help here.

I can close my eyes and remember the exact minute the first neurologist handed me the report with the ALS diagnosis. I was immediately pale and could not keep my composure. Steve had no clue what ALS was but instantly knew something was very wrong. The day both of our lives changed.

We all understand here and will help you as you go through this journey with your wife.
 
Status
Not open for further replies.
Back
Top