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  1. 2 points
    As a person with DBS, I would definitely say yes! I have no regrets about my decision, and personally benefit greatly from it, but am aware of cases where it may not have been appropriate for others. In fact, I was recently asked by my DBS team to speak with another candidate about his concerns with the procedure. After some discussion I recommended he put off the surgery for now. But think about it ... a specialized team of doctors and therapists are assembled to evaluate and treat DBS candidates. Some of these centers are without a doubt better than others, yet in any case it is quite an expense. They know of the great possibilities and are anxious to spread their good deeds. But now, 16 years after being approved by the US FDA, more centers are competing for potential candidates. Pioneers in the field are being joined by others and they all need to show a return on investment. All while the pool of potential traditional candidates is shrinking. There is bound to be some "aggressive" players in the field looking to expand their horizons. Check out this article: The article also touches on the ethics of DBS , especially due to its psychosocial effects. I hear of many failures in this procedure and considered them myself. But I was to the point where I felt there was nothing to lose. My dyskinesia was debilitating and dystonia so bad I could only writhe in bed for hours every evening. Never mind the many other common symptoms. For some of us it is a "no brainer". Others, ?
  2. 2 points
    Sorry Dianne, Take a deep fresh breath. I'm right here! I am doing ok. I patiently await July and the program that will fire up my new dbs hidden in my chest two finger widths below my right clavicle bone. Hello Linda, She Ra and LADy and Em and Marcia and everyone else. Hi Tom and Bard and any other guys as well. My shoulders are good and are much improved. Man, it has been hard watching others cut my grass and such things. I did manage to get a garden planted with some help. Soon I will be back to doing old things again I hope. Or else do a shift to a new set of things to do. My hair is pretty scary looking still. I did get one haircut last week. I got used to wearing a little toque, or a bandanna to keep things clean around the cuts and stitches. I still wear it to cover up the wiring bumps, where the connecting wires tunnelled under the skin from my chest, up my neck around my ear and up to my head are hidden, It is amazing how they hid all the wires with a minimum amount of cutting flesh. My security bandanna. Keeps my head warm too. The hair gets longer, things will look better with the next cut. I am not so fast typing, I try not to spend too much time on the internet. Often I read stuff in the morning and plan to answer things at night. At night I fall asleep before doing this. Hence the blanks blocked out. Sorry you were holding your breath Dianne. Is your pump working better now? My pill routine is back to about what I was doing before the surgery. Hit and miss with whether or not they catch. I hope my dbs does away with those miserable off times. Well, that is about all for now, I hope that everyone is doing as good as possible. Meanwhile I wait as patiently as a small acorn on the forest floor waiting to become an oak tree, for July and the startup of dbs. Be good every one, take care! jb
  3. 2 points
    Sense of smell issues are common but hardly universal. Other than that, basically what DaveN said. Also, PD is not a rose garden, but it's not a death sentence either. Relax if you can, and try not to worry about it. Especially in younger patients it tends to move slow. You've likely got years before it becomes a huge deal in your life, and in the meantime is readily managed with exercise, and if necessary meds. And that assumes you do have PD, which given everything else you have going on is probably not particularly likely.
  4. 1 point
    Hi Johnny, There may be something to your concern. At my 5 year mark, I was asked if I would consider DBS. My doctor wanted to put in a referral for an evaluation. I responded that the meds seemed to work well for me and that I hoped I would never have to face DBS but also wouldn't rule it out down the road. I also wonder about DATscans - are they being over sold too? Seems like a simple levodopa challenge is an effective diagnostic tool. Better yet, time will reveal the answer for most people. Glad you had a nice Father's Day. Gardener
  5. 1 point
    Lori, this is beautifully written. I admire your tenacity and your taking every opportunity that presents itself, be it exercise, starting and co-teaching an exercise class for PD, taking dancing lessons with your husband, picking at the guitar in the research group you have been a part of, faithfully exercising at any and every opportunity, traveling, meeting up with friends, loving and being with your family, and on and on. I have been so touched by the things you share with us about how supportive Mike has been, and the love that is there. It's also good to know you have the support of a psychologist who can be there to listen and who is trained to listen as well as help you through the emotions and challenges you face. And I've appreciated your reaching out to us through the sayings that you post, whether they give hope and comfort spiritually or are inspirational through others, such as Michael J. Fox. You've added so much to our forum, dear Lori. And we love you. Thank you for sharing your blog.
  6. 1 point
    My son & his girlfriend did a duet..enjoy!! LAD
  7. 1 point
    Happy Fathers Day to all Parkkies! May you be a great example to your kids (and grown children) in dealing with life's challenges large and small. The article below reminds us of the great responsibilities parents have from a biblical perspective. The Lord shows the way in his word. PARENTS, OBEY YOUR FATHER BY JASON JACKSON Children are the most vulnerable creatures on earth. In the Encyclopedia of Biblical and Christian Ethics, the following astute observation is found: Sadly, many are not nurtured successfully. Some are the consequence of procreative irresponsibility, and many more are left to rear themselves. Children are plugged into the social engineering of a godless pop culture. Adolescent sex symbols are encouraged and popular TV sitcoms represent a lifestyle of self-indulgence — an “ideal” bed-swapping environment in which the motto is, “Oh my God, let’s have a baby.” When Paul addressed a Greco-Roman culture in which child-rearing left much to be desired, he revealed a divine truth that transcends time. God’s plan for parents will always meet the needs of children — in any age and culture. Human wisdom does, however, find its way into the hearts of even Christian parents. Let us evaluate our thinking in light of God’s Word. Parenting God’s Way The apostle wrote, “Children, obey your parents in the Lord for this is right” (Eph. 6:1). In this clear statement, Paul conveys the divine will that there is a specific relationship between children and parents. Children are to obey their parents, because God has designed the home with this order. Children are those who need nurturing, for they are developing. They require instruction and correction (Eph. 6:4). Children are not peers at this stage. There is an authority—subjection relationship in God’s family plan. This authority is delegated by God, and a parent must exercise that authority with respect to God who gives it. No parent can demand, with intrinsic authority, this or that of a child. Too many parents act as if they are “the Creator” and the child is “the creature.” Parenthood is a gift from God (Ps. 127:3). And so, faithful parents exercise limited, God-given authority for a God-given purpose. Paul also taught that God’s domestic arrangement involves a special role for parents — authority in action. They must communicate instructions and the apply correction. Children are to listen and obey. Parents must assume the role decreed by God. They must provide instruction and correction, training their children in the nurture and admonition of the Lord (Eph. 6:4; cf. Matt. 15:19). When parents are not parents, children still grow up, but their spiritual development is compromised. Paul reminds us that the Christian family includes spiritual responsibilities. The parent-child relationship and the exercise of the parental role are designed by God to mature a person who is sensitive to spiritual realities — a person who accepts his own spiritual responsibilities. Children need to learn “what is right” (Eph. 6:1). They must learn that obedience to the Lord is the ultimate motivation for all behavior (Eph. 6:1). This is accomplished by parents who regularly teach their children to obey out of a sense of duty to the Lord. Obedience is not mere compliance. Obedience means listening and doing what is required for the right reasons. According to the Lord, this is best taught early. Wouldn’t you agree? So that we may help our children learn to obey the Lord from the heart — the seat of behavior — we must teach them obedience from the earliest of years. This spiritual quality is taught by the parents who: Give clear expectations, some of which are morally inflexible. Provide consequences to disobedience that are fair and clear. Show consistent follow-through with rewards and punishment. Demonstrate a concrete example in that parents themselves are obedient to the Lord. Parental responsibility means helping your kids go to heaven. It takes time, attention, and divine insight. Be there for your children. Be a Christian parent. REFERENCES Harrison, R. K. (editor). 1992. Encyclopedia of Biblical and Christian Ethics. Revised Edition. Nashville: Thomas Nelson. SCRIPTURE REFERENCES Ephesians 6:1; Ephesians 6:4; Psalm 127:3; Matthew 15:19 CITE THIS ARTICLE Jackson, Jason. "Parents, Obey Your Father." ChristianCourier.com. Access date: June 17, 2018. https://www.christiancourier.com/articles/1190-parents-obey-your-father ©1998 – 2018 by Christian Courier Publications. All rights reserved. ISSN: 1559-2235
  8. 1 point
    Sorry about your Daughter's illness Dianne. Hope she finds an alternate drug. hugs to you, jb
  9. 1 point
    Prayers to your family! Stay strong & stay hopeful!! Lori
  10. 1 point
    OH my, what kind of magic pill is this? Started taking Rytary this morning. The tremor in my right hand is mostly slowed down, almost to the point of gone!
  11. 1 point
    Marissa, You need to slow down a little and take a breath. There are other medical conditions why someone's arm doesn't swing besides Parkinson's such as shoulder pathology, Erb’s palsy, or stroke. Another condition could be Gunslinger's Gait. A gunslinger keeps their hand close to the gun effectively changing their gait. This can also occur in women who carry a purse and keep their arm close. Essential Tremor is associated with an action tremor. One of your medications could also be causing some of your symptoms. You need to make an appointment with a Neurologist who is a Movement Disorder Specialist to help sort this out. You may want to start with your current Neurologist to see what he thinks, then go from there. Dave
  12. 1 point
    Use the walker. Last thing yo want to do is muck up your fusion. A life of pain ☹️ sucks. Dave
  13. 1 point
    I think I've had DBS for three years, I was a good candidate for the implants younger, active, healthy, fit, positive out - look, etc. ,etc. I was diagnosed at 48 and continued to work for about four years after, I am 61 now. I can't say it was all I thought it would be. I had no expectations of what it would be but had hopes I could be active a few more years and enjoy retirement for a few years. I 'm going to see my MDS Friday and hopefully can get some improvement in treatment because I am still on the same med levels as when I started. Wish me luck if you will.
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