Carol Zavalney
Forum Replies Created
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I really wanted to say the sheets I found on Instagram were a game changer but no such luck. Maybe for some but not for us!
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Hi Paulo-reis. My husband has this issue as well. Not quite as severe as you but it’s still a big problem. We just had a virtual with our Movement doc and he suggested trying modafinil. We have tried it before but not for 3 weeks, which is what he is recommending. Will be back here if it works!!
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My husband is also on this therapy. I heard about it from a caregivers support group. Takes a village I guess. So far he’s only on 1500 mg of B1 per day but am hoping to increase it slowly. Mixed results so far but worth a shot.
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Hi JB……Well, I’m not a doctor nor do I play one on TV!! but………twitches seem to be a glitch in the nervous system for my husband. If his twitches are in his knees, he almost goes down. So if you have twitches, couldn’t the entire system go down? The neurogenic system just fails and down you go. The correct terms are failing me right now but it’s one of the side affects of this crappy disease. What a terrible thing for both of you. Whew. Our falls happen mostly at night getting to and from the bathroom. Let’s see who else can help us here!
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Kiziks makes slip on tennis shoes that are very cool. Jerry has a very wide foot and they didn’t work for him but hey, I have two pair now!
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Great Forum. Thanks for this. We too were impressed with Laurie Mischley but could not get into her. Saw her partner at the time. Like another participant said, you really have to believe in something and follow through with treatment. Laurie’s protocol is fairly strict and my husband just couldn’t adhere to it. Then came the pandemic and the wheels really fell off the bus. Saw her partner again and received a B 12 shot that should have made Jer feel better. Alas, it didn’t so of course we lost faith. It’s very difficult to try new things and see no results in several months time. Perhaps that’s not long enough. Guess that’s where the faith in your protocol comes in. Speaking of which, has anyone had success with Neuralli? Saw it on here I think and bought some but after a month, have seen no improvement in anything!
Also tried chiropractic work after we heard a woman on the radio say how it helped her PD immensely. Not so for us.
So it seems I’m always trying something for Jerry but to no avail yet. Great topic though. Now I’m checking this out!!!