Discussions By Condition: Rare Disases

shy-drager need help please

Posted In: Rare Disases 11 Replies
  • Posted By: scott47
  • October 27, 2006
  • 08:21 PM

hi everyone,i am new to this site.i hope someone can help with this.my dad has had shy-drager going on 8 years and his health has gone downhill rapidly in the last 2 to 3 mos.his problem is that not being able to swallow he has a very hard time taking pain meds.he has severe disc problems in his neck and is prescribed loricet but since he cannot swallow my mom has to crush the pills which to me seems the meds would absorb very quickly and not last as long.i thought maybe a small pill such as a long acting med like oxycontin would do much better but his dr. says that they are afraid of his breathing.it does not make much sense to me and any help would be of great help. thanks scott

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11 Replies:

  • Has your Dad ever been checked to see if he has Arnold Chiari malformation?I am sorry for your Dad for what he is going through. I am seeing a heart doctor in Toledo, Ohio at MCO, (Medical College of Ohio), Dr Blaire Grubb, he specializes in Autonomic dysfunction, Pots Syndrome and Shy-Dragger Syndrome. He is an amazing and compassoniate person and the best doctor, he is world renown for his work in this field. You may be able to get in to see him or get some assistance from his staff regarding your concerns and maybe get some of your questions answered.May God Bless your family and your Dad. I will pray for his strength to come from the Lord.Sincerely, Kathleen
    Anonymous 42789 Replies
    • November 15, 2006
    • 04:55 AM
    • 0
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  • One thing you may want to look into:Myasthenia Gravishttp://www.myasthenia.org/information/summary.htm Also, Oxycotin (and related drugs) can cause difficulty breathing, which, along with the difficulty swallowing, could be VERY dangerous for your dad. Have him talk to his doctors about a fentanyl pain patch, because this whole medicine crushing thing could be very dangerous. I'll be praying for yall.Sheena
    ShawneeGirl 37 Replies
    • November 24, 2006
    • 07:32 AM
    • 0
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  • My dad has been diagnosed with Shy Drager also, it's the saddest thing ever. IF you would like to compare treatments, maybe we could find something to make them even a little bit better. You are more than welcome to contact me. They need all the help they can get!!
    jdkggk 3 Replies
    • January 24, 2007
    • 02:36 AM
    • 0
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  • Hello, so sorry about your Father. My husband just got diagnosed with it as well and he is in the final stages, I believe. I would like to talk to anyone who knows anything about this terrible disease. Am trying to find out if they are doing any studies on this disease as well. Any info would be helpful.ThanksCindi
    mistfan 1 Replies
    • February 6, 2007
    • 06:36 AM
    • 0
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  • Cindi, I these posts won't let me email you personally for some reason, but maybe it will let you contact me - about your husband. My dad has it too. My mother would like to talk to you. Thanks and I'll be praying for your husband. Gretchen
    jdkggk 3 Replies
    • February 7, 2007
    • 02:14 AM
    • 0
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  • How have everybody's family members been. I haven't heard back from any of you so I hope that's a good sign. My dad is doing rough. I would love to hear what types of treatments any of you may be going through for this disease. Any help would be wonderful - thanks!!
    jdkggk 3 Replies Flag this Response
  • hi everyone,i am new to this site.i hope someone can help with this.my dad has had shy-drager going on 8 years and his health has gone downhill rapidly in the last 2 to 3 mos.his problem is that not being able to swallow he has a very hard time taking pain meds.he has severe disc problems in his neck and is prescribed loricet but since he cannot swallow my mom has to crush the pills which to me seems the meds would absorb very quickly and not last as long.i thought maybe a small pill such as a long acting med like oxycontin would do much better but his dr. says that they are afraid of his breathing.it does not make much sense to me and any help would be of great help. thanks scottask your doctor if there is a med patch for him symptoms, it keep the meds at an even level and is replaced every three days
    Anonymous 42789 Replies
    • August 30, 2007
    • 04:42 AM
    • 0
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  • I have a dear friend, and co-worker, whose husband is very ill with this disease. He, I believe, is in the final stages as well. I would say three more months, at best. I am sorry to hear about everyone's family members. I, myself, have done a ton of research on this disease, and it is so unfortunate. I have a question for everyone / anyone :Does anyone know where I could possibly find financial help / support for my friend in this great time of need. She has been caring for him all by herself for so long. She desperately needs to take a leave of absence from work, but needs the money to pay medical bills and the mortgage. I am doing the best I can to get her some help. . . .Does anyone have ideas or suggestions??Please email me at BKRUG@RINKER.COM if you do!Thanks to all & best wishes!
    Anonymous 42789 Replies
    • October 18, 2007
    • 05:48 AM
    • 0
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  • My father was just diagnosed with this condition after showing symptoms for the last 10 years. My mother has been caring for him by herself as well. They are struggling, but keeping positive attitudes. I am encouraged to see how many of the posters have mentioned the Lord. It's by His grace that we all go. I literally just heard about his condition 2 hours ago and have been researching it online. There seems to be a support organization at www.Shy-Drager.org. I hope it can help with managing the very difficult process of dealing with this condition.
    JulianneD 1 Replies Flag this Response
  • Scot,I'm afraid my post won't be of much help to your Father as your post was in 2006.But,for others with these same concern's,here's what I know.You have several choices.1) Contact the Shy-Drager foundation www.shy-drager.org 2) If your loved one is in pain and your Doctor is not helping or not knowledgable concerning pain,ask to be referred to a pain clinic or a Doctor that specilizes in pain control. 3) If your loved one or friend is in the final stages ask for a referral to a Hospice organization,if their prognosis is 6 months or less.I've had patient in hospice care for a year or more, that can always be re-evaluated so don't let that scare you away.Hospices are great organizations they are trained in pain and comfort control and end of life issues. They also offer some respite care to give the caregiver a break and some have inhouse facilities also. Hope this has been of some help.........Respectfully,Judith
    Anonymous 42789 Replies Flag this Response
  • hi everyone! I've never used it before, so I'm not sure how it works. I'm from Argentina and my mum have been diagnosed with shy drager a few years ago, but here there's no a lot of investigation, the disease is unknown and not all the doctors agree on that diagnostic. I've read that a girl KATHLEEN have wrote something about a good doctor and I would like to talk to you or any other person who could give me the name of the professional, to see if I can get in touch at list for have some new advise. PLEASE, IF ANYONE have some useful infomartion I would be extremelly pleased! Thanks a lot,Noelia!
    Anonymous 42789 Replies Flag this Response
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