Jump to content
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    

All Activity

This stream auto-updates     

  1. Today
  2. Great poem. I'm a writer as well, mostly fantasy and space opera fiction, but I have enough poems I'm planning on putting out a book of them, which will include a few PD ones as well. I usually write at least one each year in Parkinson's Awareness Month. Let's see if I can dig up the link for this year's poem: http://rickspdjourney.blogspot.com/2017/04/dream-births.html
  3. When did you notice non dominant side changes?

    Symptoms started on my non-dominate side, left side, mostly in my left arm and hand. First dystonia, then tremors by the end of 2012. Diagnosed in 2013 during my first office visit to a neurologist, at which time the tremors were more noticeable. Sometime in 2014, toward the end of the year I think, my right arm began to be affected with tremors, but not dystonia. Now, my right hand tremors worse than my left, but to date has never contracted dystonia. That has stayed only in my left arm. When symptoms start up on the previously unaffected side, that is known as stage 2 of PD. So far, I've not progressed to stage 3, which is when balance issues become a bigger factor, freezing can happen, falls are more likely, and any bradykinesia becomes more pronounced. I'm hoping my exercise regimen for the last 2.5 years and the DBS I'm getting this week will delay stage 3 for many more years. Of course, the earlier you get it, the slower it progresses at first, generally speaking, if there can be any "generally" statements with this disease! Seems everyone experiences it differntly, even if we have many of the same symptoms.
  4. Husband keeps falling need suggestions

    Genden - What's wrong with physically restraining someone? There are seat belts on wheelchairs and car seats that prevent people from falling over or out so why not a chair or bed? They don't have to be tight where it cuts off circulations. When I have my mom in the wheelchair and walk her around the park she likes to take her legs off the feet stand so I use a pair of socks and tie her ankles to them and off we go without any problems. Would I be cited for that?
  5. Not Diagnosed, However Need Advise

    Doubleup - I did have a PetScan, I didn't mention it because it really has no significance; I had it done before the DATSCAN was passed in the US, FDA as a diagnosis for PD. The Petscan that I had done was in the experimental phase, although, they said he was accurate for PD. It was not FDA approved, insurance, did not cover. Long story short, I was desperate for an answer, and paid it out of pocket, my money and effort backfired. I had to fly to NYC from Bflo twice. Once for a Dr. in NYC to see me and write a script for the scan and then back again for the scan itself. The scan came back "normal," I was very happy and relieved. About a year later, I read that the Pet scan is not accurate for early PD diagnosis and it is still not passed by FDA for PD diagnosis.......my "bubble" burst. Not only did my bubble burst, but it sent me down the "well" yet again........... There are people that have had the DATSCAN on this site, Dr. Okun, the Dr. on this Forum reccomends it all the time for PD diagnosis, although, I have heard of a few people that have had false negatives. With that said, I still think it is as good as you can get in diagnosing PD for now; that is, if Dr. has doubts about clinical symptoms and can't diagnose you. DATSCAN approval came to US a little late for me, but for you, it may be a good option. Linda - I can feel the empathy in your words. Thank you for understanding.
  6. scared

    Hi Scaredforhim, your boyfriend's signs may be or not be related to parkinson.However ,he needs to see a doctor, preferably a movement disorder specialist.A movement disorder specialist is a neurologist that specialise in diagnosing and treating parkinson disease and other related conditions.
  7. Ambulatory EEG after diagnosis

    Is the ambulatory EEG called a Holter monitor? If so, Yes--it's definitely valid and is often used as a diagnostic tool. Here is info on it: http://emedicine.medscape.com/article/1139483-overview
  8. Weight Loss

    2 are anridepressants and 1 is to help me fall asleep (alprazolam), and melatonin is a natural herb that is often used to help people sleep. I was on the antidepressants already (before I had the PD diagnosis) and it just happens that they help with PD, too.
  9. scared

    Hi. My boyfriends father has had parkinson for approximately 15 years. I am curious if any of these signs that my boyfriend is exhibiting could be signs of parkinsons. He does the rolling of left thumb and index finger, jumpy legs - says legs feel better when he lies in bed - tskes medicine for jumpy legs thatvis also given to parkinson patients, muscle cramps in legs, posture changes - kinda sticks knees out and slouches at times, when he sleeps he constantly flips - sometimes seems like every couple of minutes - so jumpy that I can't sleep in same bed as him, cramping in big toe often, jumpy left hand. He won't go to the dr. I think it's cause he is scared to be like his dad. His dad's nice was just diagnosed with parkinson as well. Thank you for any information.
  10. When did you notice non dominant side changes?

    I assume you mean affected side rather than dominant side from the context of the conversation. I only bring that up for any lurkers that might get confused. For the record my tremors are on my left side whereas I'm VERY right side dominant. I have, after 2 years since diagnosis, and not quite 3 years since I noticed symptoms that lead to that diagnosis, no tremors on my dominant right side.
  11. Yesterday
  12. Weight Loss

    I dont think there is a certain age limit but they take that into account when doing the assessment, I think the younger the better. My doc told me I was the poster patient for DBS I was young(not feeling so young these days) 53, good health I really wanted to hold off longer but I could barely walk so I had to do something. I have been walking much better since Linda what are all those meds you listed for sleep???
  13. Not Diagnosed, However Need Advise

    Thank you LAD, good read!
  14. Weight Loss

    Noah, I hear you.. You've tried everything you can possibly think of to do. How frustrating. I'm wondering if you have had a sleep study done? And I just noticed that I typed in my previous post that I take my nighttime meds "12" hours before bed. That should have been "1/2 hr" before bed. They take about that long to kick in, FYI.
  15. Anxiety/Tremor Help

    I feel for you, I have similar symptoms and have not been diagnosed either. Anxiety is not your friend right now PD or not. First off I have cut all sugar and caffeine from my diet. Secondly there are a number of supliments you can try. I have had positive results from 5-Htp, Gotu Kola, Ashwagandha and Melatonin for sleep. You probably will only be able to find 5-Htp and Melatonin at your local pharmacy. The others I had to order. 5-Htp can be taken in the day or higher doses at night to help sleep. Keep up with your other supplements as well. Most importantly keep your mind calm. The more you research PD and other possibilities your mind will race only adding to your anxiety and symptoms. I have done this and still battle how much time to research. Actual PD can take months maybe even years to diagnose it seems so best thing we can do in the meantime is learn to control the anxiety, exercise and trust our doctors.
  16. Weight Loss

    Stump, I didn't know about the age limit as to having DBS!
  17. Not Diagnosed, However Need Advise

    Elllaangel, I am so happy to hear you are on the other side of a very difficult period in your life. It is just such good news. I know you really struggled.
  18. Husband keeps falling need suggestions

    When my husband was in rehab, because he was a fall risk, they used what is called a high-low bed that can be lowered right to the floor to prevent injury if he should roll out of bed. An honest fact is that though precautions can be taken, falls are hard to totally prevent without someone in attendance 24 hours a day and even then there are falls. The reason for no long bars on the bed is that they can cause greater injury. It is easy to blame the NH and regulations, but they do the best they can. Before my DH was totally bedridden, he would fall right before my eyes when I was within an arms reach and in our home under my 24 hour care. One of the aides who comes on hospice told me one of her patients fell and shattered her hip last week. Her son had taken her into the bathroom to help her shower. He had her hold onto the bar while he turned to get her clothes and she went down. I am so sorry about the falls. Maybe it is better to risk falls than to physically restrain someone by tying them in a chair or bed all the time. That is what they used to do before regulations against it.
  19. Not Diagnosed, However Need Advise

    You may want to look in the young onset forum...there is a thread about anxiety...I posted some tips as my symptoms are triggered by anxiety LAD
  20. Weight Loss

    i have been doing all the usual stuff, no caffeine, no tv or computers sleep in cold room , dont nap during the day ect I have a good mattress and am comfortable just cant fall asleep . I will admit that times I cant shut my brain down but not every night. I am only sleepy when I dont sleep. I am playing around with the timing I take the trazadone At first I was taking it right at bedtime now I am playing around to see if I take it an hr before bed if that will help I have always been one of those who needed a lot of sleep so this is really hard
  21. Good morning!!

    Jb-you are a bright light on this forum! I look forward to you and the rest if the good morning gang's posts. PD is new to me and love having a place to dump my stuff-good, bad or ugly without any judgments. So...thank you all! Here is is a cool pic of tower bridge...not London bridge.... I walked across it...on the low part my hubby and my 3 sons keep me going! I've logged 15-20 miles in 3 days. Stump- how about Fall adventure season? peace- LAD
  22. Not Diagnosed, However Need Advise

    Thank you EllaAngel and sorry for the mix up! Thank you so much for the long explanation some of it I can definetly relate to! I am surprised with all your testing that you never did a Dat or Pet scan... I guess somewhere in my twisted mind I am both convinced and scared that that is what I need to determine my true condition. Anxiety is very POWERFUL and I am finding my best days right now are when I somehow manage to curb it. I wish there was an easy answer for anxiety. As there are medications they all seem to be trial and error with potential withdrawal issues when come time to try to stop taking them. My tremors definetly increase with any anxiety or type of stimulant. I did try some wine (non drinker) and it really made me more "buzzed" not relaxed at all so didn't help tremors much. I don't think they got worse though. I guess next time if I try will need something with less sugar potentially... Seems like my worst days start off and end: Low Energy - Anxiety - Tremors - Depression - Apethy Good days: Near Normal Energy - Exercise - More Clarity - Less Anxiety - Reduced Tremors So regardless of what I have going on Anxiety is a huge trigger to a good or bad day. I have also read that dopamine is a trigger for anxiety when it is low. If you can boost dopamine anxiety diminishes quickly. One day at a time here. I am trying to read less about this and just eat healthy, exercise when I can and wait out this long process.
  23. Weight Loss

    I can surely understand your frustration, dear friend. If I've already shared what has finally helped me to sleep, just skip this: I try not to drink coffee after 2:00 or so in the afternoon. Try to avoid heavy sweets near bedtime. Make sure my bedroom is as cool as needed. I take Nature's Bounty D3 both with breakfast and later in day--5,000 mg each time (and yet I still get low readings when D3 is tested). At night about 1/2 hour before bedtime, I take 0.5mg Alprazolam, 90mg Duloxetine Hcl Dr Caps; 300mg Bupropion Hcl ZI tabs, 10mg Nature's Bounty Melatonin (works better than other brands I've tried), and Hydroxyurea Caps 500mg (this last one you would not take--It's for polycythemia vera). The Buproprion is supposed to be taken in the daytime, but it helps me sleep, so I take it at night. Has worked well. For me, the time of year (around March through May approximately), I always have depression and a hard time sleeping. And each month around the new moon I have trouble. So I try not to plan anything around those times since it means I'll be very weak and very sleepy during the day. Do you have times that are especially hard for you to get to sleep?? Did you get your a new mattress, and is it working out okay? Do you have a real comfortable pillow? Do you in general have any trouble getting comfortable in bed? Additional things I do if I still have problem sleeping: Make some milk toast (the warm milk helps me get sleepy). I try to stay off computer before going to bed (not very successfully). I lie down and get real comfortable in bed and read something interesting or maybe some fiction. And of course, as I'm sure you also do, I pray for help to sleep and also thank the Lord for all the good things I can think about that I'm blessed with. Does your your dog sleep beside you? I find it very comforting to have my kitty with me. Breathing exercises are especially helpful. I think we talked about those awhile back... How do you do in the daytime? Are you in most of the time like I am? I have about zero energy almost every day. Do you have friends/family that you can talk with? I find that can help. Sometimes there are no easy answers, are there.
  24. Just Interesting Things about This and That

    And another. This is a fun one to watch and listen to! http://www.viralvo.com/6-scottish-men/
  25. Weight Loss

    Thank you linda I can use all the help I can get. I am also trying to fine tune some meds to help me sleep. I have been trying tranodone the challenge is the 25 isnt enough and the 50 makes my groggy in the AM. So basically I feel like I am between a rock and a hard place when it comes to my meds and sleep I am just so frustrated nothing seems to help!
  26. Weight Loss

    Noah, check this out from a site just posted by Drummergirl: https://scienceofparkinsons.com/2017/07/09/tetrabenazine-a-strategy-for-levodopa-induced-dyskinesia/
  27. When did you notice non dominant side changes?

    I had tremor in left hand for years and years before I knew it was PD. I just thought it was normal---just part of me. But I sought out help for a probable PD diagnosis when my right hand started to tremor in 2013, which I had read on line is a sign of PD. I was seen and diagnosed immediately by that, as well as my slowness in moving, difficulty getting up from a seated position, and a few other things I can't remember. DIdn't have to go through any tests except cognitively and physically in the MDS's office. It was confirmed by another neurologist and a brain cancer surgeon who also helped in diagnosing PWPs. They were all with the same hospital group, so it was not a long, drawn-out procedure to get my diagnosis at all. Oh--and another thing noticed was that I have sometimes a masking. I knew that happened occasionally but didn't realize it was from PD.
  1. Load more activity