mich5

I think it's fixed.

Thanks. I'll try to fix that.

Hello,

My father have PALS and I saw your message about als-new-drugs. I already contacted them, and I want to know for how long you have been using this medication and what improvment did you get. How effective is the drug?

Thanks alot, Jean-Roch.

Thanks for the note, mich5! I've not heard of mind in Farmington hills. Tell me more about it! That would sure be closer to home. Do they offer multi discipline services? We love working with Judi and Linda at ALS-MI. I've gotten very little support from the mi chapter of national ALS. Nope, haven't heard of freedom lift either. Do tell!
Deb

Hi Mich5. Ive started the RCH4 and my twitches have increased quite a bit. Did you experience this? Thanks

Hi mich5!
I am also from MI - metro Detroit area. Do you attend clinic at UoM? I happened upon your convo with JiminVA and am curious about your sleep/bed solution. Can you share details with me?

Thanks,
Deb

Sorry Michael it isn't me. I am on sure who does. I do use a lot of natural supplements and organic body products due to allergies, etc. But no oils.

Thank you very much for your response. Take care.

Hi. It seems like many people are skeptical of RCH4. I feel since there's no options I would like to look into it and consider taking it. Do you feel very comfortable saying that this group dispensing medication is a legitimate group ? Has anyone else that you know started the medication after you ? Do they let you know if it has interactions with other drugs ? I'm very sorry to bother you with this, but there's very little information on this on the web and I've tried so many things none of which have stopped my progress. Thanks!

great to see you back and posting a little Mich

So excited for you! I hope it helps with the discomfort that you've been experiencing! Keep us posted on how you do.

Jim

I passed your thanks onto Darcey.

Had the Loaner closet not had one of these, I don't think we would have been bold enough to purchase one out-of-pocket. And, for us at least, that would have been such an unfortunate mistake. In retrospect, were this one to fail and another was not available in the loaner closet, we'd make the personal purchase in a heartbeat. Oh how I wish you could try one to see if it made a difference before having to purchase one. Sleep... and being rested... has such a HUGE influence on physical and mental health. You might also want to look at the Muscular Dystrophy Association (mda dot org)... as they maintain a loaner closet, too. And you should register with them as they provide an annual $500 repair stipend for items that you might otherwise pay out of pocket. If you would like help pointing to a similar mattress to what Darcey uses, let me know and I'll get you my email address for communications if you can't PM here. Our best...

Jim and Darcey

I read your message to Darcey. She said that before we added this particular air mattress, her entire body hurt. Moving from back to side would allow it to lessen for a bit (an hour or so) before she'd wake and need to move again (back to her back or to the other side). The alternating air mattress is like a gentle massage that happens all night long. She now sleeps like a baby and no longer feels the discomfort that she did earlier. Darcey suggested that if you move your leg and the pain reduces or goes away for a bit... then it might very well be the same thing she was experiencing and might be helped by the same type of low pressure alternating air mattress. Sleep is such a critically important thing for both PALS and CALS. I hope you find relief! Let us know if we can answer any more questions.

Jim

>MadDog 20/20 on ice anyone?

LOL! Haven't heard of that one in years

hey, been thinking about you! Let me know if you're coming around. [email protected]