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Beau's Mom

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Everything posted by Beau's Mom

  1. lost sheep

    Hello, Doug. I appreciate your willingness to share your experience with PD during the time you've been away from the Forum. Welcome back! Dianne
  2. Hallusinations

    Welcome, MDGeorge. I experienced audio hallucinations from Amantadine; they went away as soon as I stopped the medication. I suggest a neuro-psych evaluation. It will determine whether the medications are causing the problem or if it's progression of your PD. For a professional opinion, post your question in the Ask the Doctor or Ask the Pharmacist part of the Forum. Dianne
  3. Apathy - any suggestions

    I discovered that I was in a grief process for each loss I experienced along the PD pathway. Obsession with the "what ifs" and the "OMGs" as I read more about progression robbed me of precious energy. As I reached acceptance of each change in function, I realized that fighting change was not a useful strategy. It only depleted what energy I had. My rehab psychologist told me 10 months after diagnosis that on stressful days, my only tasks were to breathe, eat, and sleep. If there was energy left, I could exercise. Being an overachiever I added meditation to the list. It took some years to accept PD as a part of my life. Now that I have, I can use my mental energy to find creative adaptations to my new life in the slow lane. I found the following helpful: "And acceptance is the answer to all my problems today. When I am disturbed, It is because I find some person, place, thing, situation -- Some fact of my life -- unacceptable to me, And I can find no serenity until I accept That person, place, thing, or situation as being exactly the way it is supposed to be at this moment. Nothing, absolutely nothing happens in God's world by mistake. Unless I accept life completely on life's terms, I cannot be happy. I need to concentrate not so much On what needs to be changed in the world As on what needs to be changed in me and in my attitudes." Alcoholics Anonymous Copyright 1976 A.A.W.S. Inc. Dianne
  4. Tremors only -- could it be YOPD?

    That is a question to post in the Ask the Pharmacist forum. My personal experience is that those medications do not cause tremor. Dianne
  5. This came to my email today from the Northwest Parkinson's Foundation. https://nwpf.org/stay-informed/news/2018/01/january-2,-2018-news-update/ I have been using Duopa for the better part of two years. It changed my PD experience in a positive way. Dianne
  6. Dad newly diagnosed

    Welcome, NickP1225. What type of doctor diagnosed your dad? Was it a general neurologist or a Parkinson's specialist (Movement Disorders Specialist, MDS)? Did the doctor prescribe medication that your dad is unwilling to take? PD diagnosed past the age of 60 progresses more quickly than Young Onset PD. From your description of his feet, he may be experiencing freezing, which can lead to falls and more severe fractures. He needs the medication. If you can get him to see an MDS, that would be best. Dianne
  7. maybe PD?

    Hi, Beachgirl. It would be best for you to see a Movement Disorders Specialist. Your neurologist was correct in prescribing Sinemet (carbidopa/levodopa) to see if it relieves your symptoms. PD is a complicated disease and not all people have tremor. There are about 50 symptoms of PD that an MDS looks for. Feel free to post in the Ask the Doctor section of this forum. Dr. Okun is always happy to answer any questions. Dianne
  8. Throat advice?

    Ask your doctor to order a swallow study. It will reveal how your swallowing muscles have been affected. There are exercises you can do to delay their deterioration. Dianne
  9. Good morning!!

    Our family gathering was a brunch on Christmas Eve. My sister wasn't up to the usual party at her home, so we went to her middle son's home. When Jared offered a prayer about supporting each other after the recent death of my Dad, there wasn't a dry eye in the room. The opportunity to share our grief was priceless. I was able to enjoy an outing with some friends from church to see the Zoolights at Seattle's Woodland Park Zoo. My daughter and her husband are visiting from Texas. Their Christmas gift to me was three bottles of CBD oil. It relieves dyskinesia and pain from PD. Wishing everyone a 2018 that is a huge improvement over 2017. Dianne
  10. Good morning!!

    Good morning and Merry Christmas from Seattle. We are enjoying a white Christmas this year. All the kids are excited; their parents are happy that the snow will be melted by this evening. I find I have more symptoms during prolonged stress. I can also find pockets of joy. My hope is that when the stress eases, my energy will return. That's all I want to say about that. I'm positive we will all have a Happy New Year! Dianne
  11. I've joined the club

    Welcome, Arlington. My symptoms were bilateral when I was diagnosed at the age of 57 in 2010. I've gained many friends in my years on the forum. Whatever my problems, there is someone here who has helped me find solutions. Keep coming back. We're here to support you. Dianne
  12. Good morning!!

    LAD, blessings as you continue your PD journey. Dianne
  13. Good morning!!

    Good evening to all. My dad passed away Monday, December 11, 2017, at about 9:15 AM PST. He had just had a bath and a shave and was comfortable in his bed when he took his last breath. A longtime member of the US Army Reserves, Lt Colonel Donald Keith Lyons proudly reported to his next post. His wife, four children, numerous grandchildren and five great-grandchildren remain to grieve. One grandson, my son, Casey J. Kolberg, was waiting in Heaven to welcome him to his true Home. Many thanks to everyone who held me and my family in thoughts and prayers these last three weeks. One thing PD has taught me is how to grieve multiple losses. Much love, Dianne
  14. Diagnosed at 40 very scared

    Welcome, Debsten. You are feeling the same emotions I experienced after my diagnosis in late 2010. Please give yourself permission to feel and express whatever you're feeling. Ask your MDS for a referral to a psychologist or Clinical Social Worker that is knowledgeable about YOPD. I've been seeing the same Rehab Psychological since eight months after being diagnosed. She has been a tremendous help to me, especially in the first year as I adjusted to my new normal. Depression and anxiety are normal after such life-altering news. Take the antidepressant. You probably won't need it forever. Sending you a big hug! Dianne
  15. Good morning!!

    Thanks for the supportive thoughts, jb. My dad has been moved to hospice. It should be only a few days before he transitions to the next phase of his soul's growth. I have said my goodbyes and trust he will have a gentle passing. Dianne
  16. Good morning!!

    I feel so much love and support from you, dear friends. As I leave for another day at the hospital with my family I will take y'all with me. Love, Dianne
  17. Good morning!!

    Good evening. Thanks for asking about me. My cold from last week is nearly gone, and my orthostatic hypotension is better controlled. Yesterday, my 87-year-old dad suffered a severe stroke. I spent most of the day and evening in the ED then in the critical care unit. The family gathered again today at the hospital to watch and wait. In some ways, Dad showed improvement; in the early afternoon, he developed and fever of 101. By the time I left to come home this evening the fever was down. Tomorrow we will wait again to see if he will improve. It's tiring so I must learn to budget the amount of time I spend at the hospital. The doctors say he has obvious brain activity. Only time will tell. Dianne
  18. Good morning!!

    This is a response I started over a week ago but never sent. It's nice to hear from you, Pathfinder. I imagine jb is jumping through the DBS hoops. I have a friend here in Seattle who is just finishing her programming. She seems quite happy with it. Marcia and Linda, perhaps the term for the food storage space you are looking for is a root cellar. My grandmothers both had them. Dianne
  19. Summer adventure season starting

    Way to go, Stump's daughter! As for you, Stump, I'm happy you are taking good care of yourself. Dead elk float; who knew? What does elk meat taste like? If you tell me it tastes like chicken, I won't believe you. Dianne
  20. Is there anybody out there...

    Sherrie, I learned that the symptoms I was experiencing might be due to pharmaceuticals (in my case, Zyprexa) during a class I had to take to renew my Social Work License in May of 2010. It was my understanding that drug-induced Parkinsonism is not progressive and that the symptoms might ease after I was off that medication. I was not looking for a Parkinson's diagnosis and knew nothing of PD. I didn't even see a neurologist until October 2010. I had been to a family reunion in September where several people noticed a difference in me. My daughter suggested I discuss my symptoms with my doctor. The first doctor I saw when I got home was my psychiatrist. She immediately discontinued the Zyprexa and told me to see a neurologist. He watched me for two months and when my symptoms worsened, gave me the diagnosis of idiopathic PD. Sinemet might help the residual symptoms of your Parkinsonism. Sometimes the symptoms get better over time. At least there is comfort in knowing you will not face progression. One thing I regret is following the neurologist's instructions to learn all I could about PD. I scared myself by assuming every bad thing I read would happen to me, and soon. Now nearly seven years after diagnosis, I have learned that obsessing about what might happen steals whatever joy there is in my life today. You can always post your questions and concerns in the Ask the Doctor section of the forum. Dr. Okun has helped me many times when I left an MDS appointment more confused than I was when I arrived. Dianne
  21. Is there anybody out there...

    I for one had my diagnosis delayed because I had been taking antipsychotic medications for about 10 years. An MDS in Houston told me that antipsychotics cause Parkinson-like symptoms and might take up to a year to completely leave my body. I was praying he was right because I didn't want to have PD. He was wrong; I have idiopathic PD. Dianne
  22. Nutrition interventions

    Kathrynne Holden was the nutritionist. She now has a Facebook page titled Parkinson's - Chew on This. She is always very helpful. Dianne
  23. Good morning!!

    Em, wish your mum a Happy Birthday and your son a Happy Birthday and congrats on his graduation. It will be a busy week for you! Linda, I understand your difficulty with tasks. The saddest part of PD for me is that I can no longer relax with a good, long book. LAD, at times like the one you shared, I wish I could make a citizen's arrest and hold the culprit in custody until the rudeness police come and take them away. Dianne
  24. Good morning!!

    Good morning jb and all of you. The date for changing the tubing for my pump is November 28th. In the meantime, I'm on a very short leash because the current tubing is very short. What's been keeping me inactive recently is orthostatic hypotension. It's due to the Neupro, which was prescribed for the dystonia in my stomach. The dystonia is caused by the wrong tubing. My MDS has me on two new meds to help with the low blood pressure. If I sit up from a reclining position, I get dizzy. Sitting with my feet on the floor makes it worse. Standing up causes dangerously low blood pressure. The last two days, I've had to have someone walk me to the bathroom with a gait belt around my waist while I push my walker. It is quite inconvenient. As soon as the tube gets changed, I will go off the Neupro. I hope to be able to leave my apartment at some point. Dianne
  25. Insurance? I'm only 57.

    There is a PD Center of Excellence in Colorado. If you call the Helpline listed on the homepage of this website, you can get the number. I suggest calling their office and asking which insurances they take. The open enrollment this year ends on 11/15 and is not being advertised by the current administration. If you act quickly, you may still fall under the protection of the preexisting condition clause. Find the most coverage you can afford. PD is expensive and the right doctor (Movement Disorders Specialist or MDS) vs. a standard neurologist makes for much better treatment of this complex condition. Welcome to the Forum! Dianne