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Re: [Huntingtons Disease Support Club] Son with HD diagnosed at 19 - how 25.

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  • Mary Miluski
    Does he live independently?  Maybe you can get him to see a speech therapist who also works with swallowing issues. You may want to buy some Thicket so his
    Message 1 of 4 , Feb 1, 2010
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      Does he live independently?  Maybe you can get him to see a speech therapist who also works with swallowing issues. You may want to buy some Thicket so his liquids don't choke him so easily.  Usually straws are not recommended for people with choking problems but my sister could only drink using them.  I've seen that other folks have used them as well.  I know this isn't much but it's a start.  You also may want to check the HDSA web site to see if there are any HD Centers of Excellence near your home.  You have my deep sympathy with your son's HD.  Half of my family had it.  And I have 2 adopted kids so I understand some of that aspect too. Wishing you all the best...


      From: Cheryl Lawler <chlawler@...>
      To: huntingtonsdiseasesupportclub@yahoogroups.com
      Sent: Sun, January 31, 2010 8:12:05 PM
      Subject: [Huntingtons Disease Support Club] Son with HD diagnosed at 19 - how 25.

       

      Our adopted son is 25 and was diagnosed with HD at 19 (tested positive). He had been showing symptoms for a couple of years prior to that. His bio dad and grandfather both had HD. He deals with it by denial mostly. Just a few days ago he started chocking and his sister was able to help him. This is the scary part for us. How do we help him when we aren't always here? 

      Also, we are looking for a nutritional supplement and/or diet to help diminish his symptoms and progression.  Anyone know of good recommendations and do you know any great doctors (Naturopaths good too) in the WA state area?

      Thanks,
      Cheryl
       
      <font face="Comic Sans MS" color="#7f007f" size="3">Remember to show love and appreciation to all!</font>
      <font face="Comic Sans MS" color="#7f007f" size="3">Cheryl Lawler</font>
      <font face="Comic Sans MS" color="#007f40" size="3"></font>&nbsp;



    • gina delucia
      Sorry to hear about what you re going through.   I agree with Mary. Definately get a speach evaluation first. It may be something simple to prevent choking.
      Message 2 of 4 , Feb 1, 2010
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        Sorry to hear about what you're going through.
         
        I agree with Mary. Definately get a speach evaluation first. It may be something simple to prevent choking. Definately check the HDSA website. It may be able to point you into the right direction.
         
        As for supplements...Ensure or Boost. Extra butter. There's protein powders available in nutrition stores or even a local pharmacy that can add extra calories. I just went with...what they tell you to cut out of your diet....sauces, gravies, butter... add double (lol). Frequent snacks, yogurt, puddings, and extra small meal between larger meals adds so much too.
         
        Good luck. Please let us know how if there's anything we can do to help you.
         
        Gina

      • Ken Novak
        My wife is in  her 17th year of HD,,,she is 62---I personally believe that CoEnzyme Q10 is the best of anything she tried.....For years she took three 200 mg
        Message 3 of 4 , Feb 1, 2010
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          My wife is in  her 17th year of HD,,,she is 62---I personally believe that CoEnzyme Q10 is the best of anything she tried.....For years she took three 200 mg pills daily. She also took one each of the large size Vitamin E and Fish (Salmon) oil...I know of a clinical trial using 2400 mg of CoQ10 a day.  I don't know the progress... but I know there is a lot of interest in CoQ10...  I did not observe any benefit of using Tetrabenezine... We were getting pills through Canada five years ago... All she did was sleep....She took three 25mg tablets a day... She has not tried any since. 
          USDA approved the manufacture in the U.S.---My wife who needs a hand to walk short distances  would be considerable more agile and be enjoying a much better quality of life if she had avoided falling and sustaining head injuries....She still refuses to wear any head protection...Each head injury from falling started a very noticeable new downward curve in her HD declilne..... I would say that the prevention of head injuries may be the single most important factor in inhibiting the effects of HD.  Also take CoQ10.

          --- On Sun, 1/31/10, Cheryl Lawler <chlawler@...> wrote:

          From: Cheryl Lawler <chlawler@...>
          Subject: [Huntingtons Disease Support Club] Son with HD diagnosed at 19 - how 25.
          To: huntingtonsdiseasesupportclub@yahoogroups.com
          Date: Sunday, January 31, 2010, 7:12 PM

           
          Our adopted son is 25 and was diagnosed with HD at 19 (tested positive). He had been showing symptoms for a couple of years prior to that. His bio dad and grandfather both had HD. He deals with it by denial mostly. Just a few days ago he started chocking and his sister was able to help him. This is the scary part for us. How do we help him when we aren't always here? 

          Also, we are looking for a nutritional supplement and/or diet to help diminish his symptoms and progression.  Anyone know of good recommendations and do you know any great doctors (Naturopaths good too) in the WA state area?

          Thanks,
          Cheryl
           
          <font face="Comic Sans MS" color="#7f007f" size="3">Remember to show love and appreciation to all!</font>
          <font face="Comic Sans MS" color="#7f007f" size="3">Cheryl Lawler</font>
          <font face="Comic Sans MS" color="#007f40" size="3"></font>&nbsp;



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