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About jaw_nc

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  1. jaw_nc

    Centers of Excellence

    Thanks TexasTom! He had a pinched nerve, which he mentioned to his pcp who referred him to a neurologist. I guess he was lucky, she happened to be a MDS. He is on medication, but it is not working (at least he doesn't think so). Most likely it needs to be increased. I just don't want to miss out on any opportunities for him to be evaluated for trials, etc. His symptoms are mild, but for us, they are huge. This is all so new to us.
  2. jaw_nc

    Centers of Excellence

    Hi everyone, I am trying to get some information. My husband is currently seeing a MDS for his parkinson's (dx 2/15). We are wondering if he would be better off going to one of the Centers of Excellence. We are about an hour away. We do have a movement disorder clinic here in our town. His MDS is part of it, but he does not see her there. When we asked about it, she just said that they didn't have trials he would be a candidate for. What are the benefits of going to a movement disorder center vs seeing a MDS? Thanks so much for your help.
  3. jaw_nc

    Good help is hard to find

    Are you going through an agency or privately? I am assuming it is private. Have you considered going through an agency? It may take the headache out of some of your issues. If one doesn't work out, they will be able to replace her. Just a thought. Good luck to you!
  4. jaw_nc

    Why don't the meds work all the time.

    Just curious, my husband has been taking 1 carbidopa levodopa 25/100 3 x day for about a month now. He takes this about 2 hours after meals (morning dose before breakfast). It has done nothing for him. He is actually feeling more rigid and his jerking is worse. Is this because he will need a higher dose? He works a physical job and exercises. He is so exhausted! I tell him he needs to take just come home and rest at times. We go back to the MDS at the end of the month.
  5. jaw_nc

    Recently Diagnosed

    I never heard of the Snowflake disease. But I do think you are right. It seems to have so many symptons.
  6. jaw_nc

    Recently Diagnosed

    Thanks Coach, That is good to know. We are just trying to figure it out.
  7. jaw_nc

    Recently Diagnosed

    My DH, 55yrs, was diagnosed with PD in February. I think this may be Atypical, but only time will tell. He is currently taking Mirapex (generic) form 1mg, 3 xs per day. His symptoms are, but not sure what is related to PD and what is not. I am trying to put together what has been going on with him over the years and will take this to the Neurologist when we go back left are does not swing left hand weakness. This has recently gotten worse gait has changed very slow movements dizziness (only twice) sleep apnea (he is very physically fit) Trouble sleeping ED (started ~2 years ago) He was told he his blood pressure drops when standing when he went to a health fair over a year ago. Constipation. This just started, could it be the medication? Very tired, comes and goes. Tripped a few times, no falls, and I think some freezing. Any insight or experience with any of this? Thank you!