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DPB

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  1. I have young onset Parkinson's; diagnosed 12 years ago at 35 years old. I really feel for my wife. She has to take care of my boys (4 and 7 yrs), deal with me, work (I do work fulltime as well) and have time for herself. One thing that really is hard is when she gets sick herself with the common cold or flu; or even has a strained neck or back; or did not get much sleep the night before. She feels like she has no right to complain about her pains when they do not compare to my problems. I really try to assure her that her problems are real and her need for and right to have my attention and compassion is important. How do all of you deal with your spouse with Parkinson's when sometimes you need some attention? How do your spouses (with Parkinson's) react to a complaint or request from you when your health is bad?
  2. I am sorry that you are feeling this way; you described the symptoms well; I have much of the same so you are definitely not alone. How do we bring non-Parkinson's folks into our world? My wife really cares but complaining about the issues to her constantly is getting old. The first 10 years were fine; I exercised, had hobbies and really ignored my disease; I am no longer able to keep the positive attitude. I try to be optimestic but the actual disease is really setting in. I would love to have feedback from people who have very advanced symtoms and are still able to maintain a near normal existance. How old are you? how long since diagnosed? how many months/years have you been in your current condition?
  3. Sounds like you are really struggling. How old are you? how long since diagnosed? how many months/years have you been in your current condition?
  4. I feel tired, weak, stiff, shaky, anxious, sick to my stomach, sore, dizzy, fuzzy headed, depressed ........... all in the course of a day or even over a 4 hour block of time some days. Where I am located in terms of my 3 hour medication cycle determines what state I am in at any given moment. If I take the meds on an empty stomach or just consumed protein; if I only got 3 hours of sleep last night, if my work day started off stressful; these all change the game. Weirdly, some days I feel and act pretty normal (Parkinson's standards). Sometimes I'll say "I wish you could experience this for one day", then I catch myself and apoligize saying "I don't wish this on anyone". The challenge is that all of us with Parkinsons are at different stages and even then, everyone experiences the symptoms differently. How do you describe our world to someone without Parkinson's? If a friend, family member or stranger really wants to understand how this disease effects us, what is the most effective way to convey our experiences without completely overwhelming them?
  5. My short history: 47 year old, male, diagnosed with PD in 2002, taken medication since 2007, very athletic until 2012, recently had several non-epileptic seizures; also find myself on the floor near my bed in the morning once every month or so. 5 months ago, I managed to dislocate (and self relocate), break bones and tear muscles in left shoulder but don't remember any of this activity. My Issue: While speaking to someone, I forget what the main point I was trying to convey to them during the short conversation. I get in the car and forget where I intended to go. I miss the right turn to drop off my kids at school. I search for key words that are important to convey my thoughts during conversation. I have forgotten major periods of time in the past concerning all aspects of my life. I could watch the same Netflex movies two weeks in a row if my wife did not catch it and comment that we saw the movie last week. Does any of this sound familiar? When I visit my Neurologist, I mention the various new experiences with memory loss and he just gives me 4 or 5 simple words to remember during the session and at various points during the 20 minutes, he asks me to repeat them; I fumble a bit but can remember 4 of the 5. From this one test, he says "your memory is fine". I leave frustrated that even though, I struggle on a daily basis with memory issues that I consider serious, the doctor discounts this issue by saying "this is from Parkinsons, just deal with it". When I talk to friends, colleagues and family, they also don't believe there is much to it and that the memories will return. Questions for all of you: 1) Who believes that my memory issues are due to medication? I take Sinemet (25-100mg 7 to 8 tabs daily), and Entacapone (200mg x 4 tabs daily), and Bupropion (100mg x 2 tabs daily) 2) Who believes my memory issues are due to psychological issues like Conversion Disorder? (had some diagnosis in past but conflicting doctor opinions) 3) Who thinks it might be due to just sleep deprivation? (I get 4 to 5 hours nightly but not always solid) 4) Stress? (I have been building/growing an aerospace engineering and product based business for the last 6 years) 5) What about dimentia or mild cognitive impairment (MCI)? I've read that there are many stages of dimentia and MCI. I'd love some feedback especially concerning all of your experiences with memory (short term, long term)