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Found 7 results

  1. Hi. My name is Delise. I'm new to the forum, so before I actually ask my question I'll give you a bit (a lot) of background on me. I was diagnosed several months ago. After years of on going problems ; fatigue, severe cognitive issues, short term memory loss, left hand resting tremor, the feeling of concrete in my legs (many other issues but since my brain can't remember everything I'd have to look at our notes). Literally going from someone who was in top physical strength running 5+ miles, exercising and a Director of Marketing for a medical device company to barely able to walk without a cane. When all blood work, labs, MRI's all come back fine I started getting labeled with everything under the sun, stress, anxiety, somatization (psychological distress in physical symptoms), CFS, fibromyalgia, ME, depression, on and on. And going from Dr. to Dr. to get some sort of diagnosis. My family history with PD runs deep. My mother first was diagnosed with PD then with MSA (she only lived about 4 years after her diagnosis of MSA), both her parents had PD (died from other causes) and my maternal great grandmother also had PD (again, she died of other causes). My GP was no help, so when he got fired for peddling pain killers a new Dr. came on. A DO (Dr. of Osteopath) this was last year and for the first time I had a Dr. who listened and examined me. He said "I think it's MS or PD, so since you haven't had a spinal tap, lets get that and see." At this point in my life, I honesty didn't care what I had. I knew my body was sick, but with what? The spinal tap came back negative and honestly, I felt sad, defeated again (I know that sounds insane and stupid but I'd never been this "sick" hell, I never ever felt tired much less fatigued). When I returned to his office he said "let's try something, the meds for PD. If they work, we pretty much have our answer." I took them (first month I was so nauseated), but take the nausea away, the issues were going away. After the first month the nausea went away and I was walking almost normal, tremor no more, fatigue better, speaking (I paused a lot, said um, wrong words for things and I use to speak fluent with ease in front of hundreds of people), I was 75-80% back to normal. Went to 3 month follow up with DO and he and his nurse were astonished at my improvement and couldn't believe it as they had never seen me "well" he said it's PD no doubt. Let's get you to movement disorder Dr for diagnosis. Well, I waited 5 months to see her and in the mean time I was feeling great. Came time for appt. nurse called and said "be off your meds 24/48 hrs so she can test you first off and give you your meds and retest you." This is the same hospital that I'd seen neurologist, rheumatologist, infectiousness disease Dr's on and on. She came in sat at the computer and for the first 10 mins read the notes on me from other DR's (as I could barely sleep the last two nights crying with pain, legs stiff and like restless, tremors, slowness and pausing of movement, balance trouble on and on,), she asked questions, and did the physical tests. She didn't ask me to take my med to retest me. These were pretty much her words "You don't have PD, you have a parkinsonism disease (my husband interrupted her and asked the name, her answer) I don't know. I can tell you your too young for PD (at the time I was 46) and your tremor is not like Michael J. Fox's (she seriously said that, FYI my DO later named my tremor pill rolling, I personally never heard of it pill rolling) she continued to say "with your family history you are very highly susceptible to getting PD. You could get it next month but you don't have it today." That was it, with the help of my husband I made it to our vehicle, took the med and the symptom's got less and less until "poof" felt physically normal but again defeated by another "Dr." I did a follow up with my DO a month or so later, she hadn't sent him anything. Still he's yet to get any report from the movement Dr. May of this year I had to have my yearly physical and my DO asked me to come in a week or so early to get typical blood work done so he'd have the results at my physical. He asked me "don't take your meds 24 or hours before you come back for your physical". I said Ok. I could again barely walk. Stooped over, shuffling, tremor on and on. He tested me (same tests the movement Dr did). Take meds and said "while I'm giving you your physical we'll let them " kick in". As he's doing the ear checking, heart etc. I'm unaware (until he told me at the end) he's watching my tremor slowly go away, my speech is more together and my voice now even was tremoring off the med. About 45 mins later he retests me and everything is like "normal" the 75-80% of normal. My "new" normal. His words were "this is bullshit, I'm diagnosing you with PD, I don't care if I'm not an " official movement disorder Dr". He actually use to be a anesthesiologist Dr but has a hereditary movement tremor and went back to school. Anyways, I know this was crazy long (so sorry, I ramble, even in typing) and I still yet have gotten to my question. I've noticed the past month (seems to be getting more frequent) at night I'm dreaming I'm sitting on the toilet or sometimes maybe I do dream and can't remember the dream or I don't dream, not sure (I pee ALL the time and never use to and I get up many times at night and since getting "sick" and also have horrible constipation) and I'll wet myself. Sometimes the warm feeling will wake me, so I haven't wet the bed like full on like a child but my sheets have gotten damp, have to clean myself and change. Has this happened to anyone else? Again, sorry for the long introduction to a simple question.
  2. Hello, I am studying design and technology in year 11 at Catherine McAuley High School and am currently designing a product to enable those who are diagnosed with Parkinson's Disease to live a more independent life. My main focus is on designing a tool which makes the everyday task of hanging out the laundry much easier. The following questions are part of my research in order for the design to suit personal needs and be successful in improving the lives of those who suffer from Parkinson's. Any questions that you don't feel comfortable completing can be left blank. Click here to complete the survey. Thank you for helping in the process of allowing those diagnosed with Parkinson's to become more independent.
  3. Hello, My husband is 50 and started showing signs of PD a few years ago. We did not really realize there was an issue until late last year. Because I am a scientist for a pharmaceutical company which is focused on PD, We actually have a drug which will go onto market next year for PDP. Anyway, I suspected but ignored his symptoms because I was getting ready to have a baby. We had our baby in March and he was diagnosed with Parkinson's Plus (a misdiagnosis) in April. It has been a year full of ups and downs. I am 47 and becoming parents again after 23 years was a shock for both of us, especially with my husbands new diagnosis. As much as I know about PD, I am scared to death for him. He can no longer work. He had just given up until just a few months ago. I went back to work after maternity leave and taking care of our new baby boy has given him purpose again. We saw a specialists in Irvine, CA who does some consulting for my company and is an expert on movement disorders. He is the one that told us that he believes the Parkinson's Plus diagnosis was inaccurate. I was so relieved. He put my husband on Levodopa. Previously, my husband's neurologist put him on it for a month to use as a diagnostic tool in order to determine weather or not he had regular PD or Plus. The drug worked so he was not sure. He quickly took him off of the drug because he said it was saved for older patients in later stages and that it would eventually stop working. He put him on Requip which actually worked as well. Our new doctor said this is a common misconception and is false and put him back on the Levodopa. I have never known anyone with PD and having it hit this close to home is rough.
  4. Hello. Well, here I am. Still up at 3AM knowing that there isn't anything I can do but learn to live with this disease. I was so angry and so frustrated that I flung myself to the floor and threw the biggest, loudest and most unsightly temper tantrum. Any two year old would have been proud. About 10 years ago I noticed that my memory was slipping. Little and (big) things like what day it was or renting the same DVD six times because I thought I hadn't ever viewed it before. Then about 5 years ago I started having trouble with walking. It felt like my feet were just too heavy and I struggled to just keep up a "normal" pace- pick em up and put em down. Then 2 years ago, my ring and pinkie finger on my right hand felt numb and cold on the outside but the bones in both fingers felt like frozen steel and hurt bad. Maybe I slept on that hand? Nope it didn't go away. But instead was joined by the ring finger on the left hand wagging and making tiny circles all of the time. 2yrs ago that's when I weighed 159 lbs and I went to my Dr. Passed on to Neurologist who had MRI done and then another MRI with contrast. Blood work. Tagged with Bilateral Tremor and treated with Klonopin -1x a day. Had check up 6 months later weighed 135 lbs with both hands and all fingers shaking and twitching Dr. upped Klonopin to 4x a day. I saw the Neurologist a few more times and was told as long as the Klonopin was maintaining it's "hold" they weren't prepared to say it was Parkinsons. Meanwhile, I needed to have surgery done by Urogyno. Hysterectomy, bladder mesh, etc. Surgeon would not operate until he got a letter of clearance from Neurologist. Surgeon said that if I have Parkinsons he would need to use different method to put me under. Neurologist gave him the clearance letter. Surgery was April 3, 2014. Surgery went fine. But I went into full on Parkinsons within 6 weeks. Stuttering, freezing, falling, fainting, tremors, cannot swallow REALLY SCAREY and I now weigh 91 pounds. I am on carbidopa-levodopa, amantadine, temazepam, clonazepam, Colace and my thyroid replacement med levothyroxine. I use a walker. My 80 year old mother gets my groceries, pays my bills, gives me a bath and dresses me, feeds me. I cannot drive, open a water bottle, button or zip clothing. My right arm is frozen against my upper body bent at the elbow as if to shake your hand. It really hurts all the time. My right foot is the one most likely to freeze and send me falling face first if I try to shuffle without the walker. And constipated OMG I hate it, hate it, hate it! All of it. Not just what is happening to my body but to lose control of every aspect of my life. And so darn fast. On April 3, 2014 I had bilateral hand tremors. Then was diagnosed with full blown Parkinson May 28, 2014. I don't know much about "rate scale" but mine is 4-5. Someone told my mother 5 is end stage. How can that be? I got a call from Behavioral health at 8:30 am. She wanted to do a phone assessment of my mental stability. First question was - are you depressed? I managed a stuttered FFFFFFuuuuuuu. That's when I had my all out, throw down, crying, twitching, pity party of a tantrum. Are you depressed? Seriously? Ok, if anyone reads this I want you to know that I am a fighter and not about to give up. I have an appt. with a Parkinsons Specialist the 8th of July and I know that I'm only on 2 Parkers meds. There are all kinds of treatments and combo meds to try. I know this. I want to thank NPF for providing this forum. I needed to vent tonight. Thank you so much.
  5. Rkiesel47

    Diagnosed two weeks ago.

    I've just be diagnosed, the only symptoms so far is the tremor and balance. So I'm kinda checking in.
  6. Joe Cortese

    Deep Brain Stimulation

    Hello everyone! I am new to the forums. My name is Joe aka "allshookup". I am looking for some insight about DBS Treatment. Can anyone help me? Basicly nervous as all hell. I have been on all kinds of meds (sinemet, requip, requip xl, comtan, and zelapar) I will never take zelapar again, that one really screwed me up. I am currently 45, was diagnosed at 38. My doctor suggested DBS treatment. Was shocked when first heard about it. Basicly scared about it being a procedure on my brain. That falls up there with back surgery. Never will consider thar either. But after hearung my wife and kids comments about lifestyle in the last few months we depressing. They says I have been just a lump on a log lately. So talking to my wife, I have decided to make a life changing decision and go ahead with DBS treatment. So if anyone could tell me anything please help? If you had DBS treatment? Know someone who had DBS? You are going to have?
  7. Hey All, This has been a great community to find information regarding Parkinson's disease. In return for the great advice, I would like to share something that I have recently added to my toolbox. Today, I came across a new press release regarding HealthTap's new feature of allowing users to see their doctor's network of trusted doctors, and I hope this is an interesting read to someone Link to press release: http://bit.ly/RWBvAM Jake