Recent content by konagirl

Hi Diagnosed2016, do you mind me asking which drug your husband is having to come off of? We go in for pre-screening in two weeks and if there anything my hubby needs to stop taking, I would rather him do it now as opposed to getting to the pre-screening and finding out.

Hi Buckhorn, I too have been looking for a lightweight foldable wheelchair for my husband. He is also a smaller guy, 160lbs and 5'9, but I want the HD for the bigger tires as well. I am wanting to order something by next week at the latest and just cant seem to make my mind up. At first I...

I do agree that weight is an important issue Tillie, I actually learned that here on these boards :) I try to take a little bit from everyone and then incorporate it into what works for us. That is how I landed where we are now, I can keep the calories on but the toxins and pesticides away with...

That's pretty much what I said to Chad too, there's nothing to even make a decision about at this point. We do not even know yet how he will tolerate the higher doses, so there's that. But wanted to at least share here what I have been told in case anyone else is trying to decide on this trial...

She believes she can slow progression....and possibly cure. I'm no dummy though, I have done plenty of my own research. This is the balancing act I mentioned, we are not giving up on conventional medicine. We are trying to do everything we can, where we can and when we can, but it cant all be...

Oh and to be more specific....the first diet we started with, before tweaking things, was a strict AIP diet. Autoimmune Protocol, it is a bit stricter version of Paleo.

I don't know how to feel about this, or what to think......

Just in case anyone is following this CDG-0134 trial, I wanted to post a little update on where we are: Chad was supposed to go back for his second dosing and second week in the hospital on 7/11. This has been pushed back to 7/25. The reason being is because Genetech wanted all 8 participants...

Hi Kim, My husband let me drag him to a nutritionist in February and we see her every month now. I have also ran the research marathon and am trying now to balance between conventional medicine and functional. I will share what I have learned from her... My husband works as a printer, he works...

Oh and we just got him scheduled for a baclofen injection, a trial run to see if the pump will help him more than the oral medicine. Really really hope it gives him so major relief from the spasticity.

Hey Thomas, No he is not a member on here. I hope he will one day join, but for now he is just not ready. He's still struggling with accepting all of this, so we try really hard right now not to look to far into the future, it just scares him. I think that is one reason he is apprehensive of...

I am definitely going to try again. Overall its a protocol for the entire floor, but some nurses were a little more lenient than others. They are not really used to have trial patients admitted like this, so there are some learning opportunities for sure. I wont stop asking though!

Thank you for all of your response, this shit sucks. You guys help though. I do need to let go. We have a huge support system, as we have both grown up in the same city our entire lives and all of our families are here with us. I am starting to recognize in myself that I am a control freak, I am...

Hey there Thomas, so sorry you are here. Just wanted to say my husband is also in his 30's predominantly UMN, his spasticity is doing a number on him. He feels like if we could just get that under control, he could walk halfway near normal again. So that's our main focus, if we try something...