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Found 9 results

  1. Dear Doctor, After bilateral STN I have Pulse = 60, Frequency - 180 Hz, Amplitude 4.2 and bipolar stimulation on one side. Can this frequency be decreased to 130 or lower values to decrease the speech and swallowing problems while controlling the tremor at the same level by increasing the amplitude. Thanks
  2. Lorelai

    Tremors, stiff thigh.. etc

    Hi, Female, mid 40's. Background. I have disc bulges in C spine as well as lumbar. Have had a cervical fusion quite a few years ago. Symptoms. 5 yrs ago started having some swallowing difficulty, solids only. Still have difficulty with solids only. Hasn't worsened. Had endoscopy, barium done. Normal, except weak lower esophageal sphincter. I have heartburn though. Also for 5 years, paresthesia ( tingling feeling) down left side of body. Neurologist said was due to migraine with aura and vertigo. Which I do have. 2 years ago I had a bad fall from standing and hit the back of my head hard. No concussion/loss of consciousness. No imaging was done, though I did see a Dr. My head still hurts where I hit it to this day. For the past 2 years my shoulders feel weak, especially when trying to roll over in bed. A year after that I noticed left thigh feeling of stiffness. I can move it normally though. It feels constantly stiff. Some restless leg when trying to fall asleep. Last year I started to notice internal head tremor feeling, base of my neck only, very slight though and only when in seated position. Last 6 months I notice if I hold my arms outstretched I have shaking on occasion. When I put them down and rest them, it goes away. I have dry mouth. No I am not on medications. Past 2 months I have had loss of balance, only twice though and not bad enough to fall down. Started having vivid dreams the past few months. Pinky finger on the opposite hand (right) has twitched when holding my hands out. This pinky finger also migrates away from the rest of my fingers when outstretched. I do have a referral in to see a neuro but it can take up to a year to see one. Do these sound like Parkinson's symptoms to you? I find it unusual that the thigh muscle stiffness and tremors happen on opposing sides of my body. I have no resting tremors.
  3. Curt Bates

    More Questions than answers

    Wow! This is an awesome place for knowledge and support! I am new to the neighborhood and like so many of you have more questions than answers! I think that talking to people that have PD is the best source to find out answers. My story: I am a 43 year old, small business owner (ACE hardware), suffer from hypothyroidsm for 31 years, and otherwise in decent health. Over a year ago I began having trouble swallowing and brushing my teeth. I couldn't spit the toothpaste out without it going all over me. I, for whatever reason, chalked it up to stress. The problem presisted but wasn't high on my priority list as it didn't happen everyday. I also begin to notice that I couldnt print anything legible. I could write it, but it was super small and jumbled up. I just figured that since I use the keyboard for all correspondence I had gotten out of practice. Dumb, I know but I was struggling to understand. About six months ago, I began slurring my words and having real difficulty speaking. Not all the time, just very sporadic. I also developed a twitch in my right pinky finger and my right leg has always "bounced" when I was resting ( my wife always said this was due to my hyperness). I begin to have more concern as to the cause of the tremors and if the other "weird things" were related. This is where the path begins. I saw GP who ordered an MRI, which proved to be negative. I was referred to a neuro for initial examination. She performed the typical examinations (i.e. spiral test, walking, balance, etc.). Upon conclusion of tests, she told me I didn't swing my right arm when I walked. I, nor my wife had ever noticed that little detail! I asked what that meant and what she thought might be wrong with me. She suspects PD but refferred me to a movement specialist because of my age and ordered a datScan. The frustration begins here. Insurane will not approve the datScan until I see a movement specialist. The earliest I can see a MDS is 4 months away. UGH! The frustration is terrible! I have read so many of your stories that have similar characteristics to mine. I am fine with a dx of PD but I am worried that waiting so long to begin meds will speed up the disease. I know that doesnt really make sense but it is a concern. I know that waiting patiently is something everyone has to do, but when you are the one waiting, it is hard! My questions would be: 1) Is the delay to seeing a MDS going to speed the disease along? 2) Are my symptoms characteristic of other PD patients? Like I said, if this is PD, I am fine with it, I am just ready to start finding my way down my new path of LIFE! Thanks for listening and I pray nothing but peace for all of you!
  4. Hi Kathrynne, I really appreciate your kindness and desire to help in regards to my mother who is diagnosed with atypical Parkinsons. 1- Last week, she was constipated for 3 or 4 days. My father gave her Miralax and it didn’t quite help- her stool was stuck. She went to emergency room and she got enema which cleaned out her bowel system. They x-rayed her belly and it looked fine. The doctor recommended giving my mother a teaspoon of benefiber each day. They also recommended bran muffins and organic oatmeal cereal. Do you think it’s a good idea to have this amount of fiber? How should we deal with future constipation issues? 2- My mother has delayed swallowing it takes a while. She coughs on big chunks of food, thin liquids, and with saliva build up. We are very concerned about this. She coughs at night in bed and we think it might be coughing on saliva build up. Do you have any advice about this? 3- My mother had incontinence- doesn’t realize when she has to go to bathroom. Is there anything that can be done about this? 4- What do you think of the vitamins and supplements my mother is taking? (see above) - Are there any additional vitamins/supplements she should take? - Should she change any of those vitamins/supplements? 5- Here are typical foods my mother is currently eating: Salmon, gefilte fish, mashed potatoes, Yogurt, apple sauce, oatmeal, soup Egg salad/swiss cheese sandwich (cut up in pieces) Coffee with three spoons of coffee ice cream (to thicken the drink to prevent coughing) Smoothie- 8 chunks honey dew, 8 chunk cantaloupe, 8 chunks pineapple, mango juice 8 ounces, 2 ice cubes, and 2 table spoons of apple sauce What do you think of these foods? What type of diet or specific foods would you recommend? 6- What other nutritional advice would you recommend? Thank you so much and I look forward to hearing from you!
  5. Hi. I am a 37 year old woman with a grandfather and father with Parkinson's. I feel as though I have early symptoms, but my doctors have brushed them off saying it would be unlikely as a woman in my 30's to have Parkinson's. I know that I have the same gait as my father and grandfather, and occasionally a resting tremor. My main symptom is when I get up from sitting I have to take 8-10 steps before I can raise myself straight up from a hunched over "L" position. I am in pretty good shape and work out, but I experience this being "stuck" whether I've worked out or not. I also feel like I have trouble swallowing at least a few times a day. I know I don't have very severe symptoms, but I wonder when I should really bring it up seriously with my doctor or see a neurologist. Any thoughts?
  6. bspin888

    Collection of symptoms Dad

    I am new here. And looking to find out if anyone else has friends/family that have been diagnosed prior to motor symptoms. My dad can't smell anything - and hasn't been able to for the last two years. He is losing weight, has REM disorder (which supplies our family with hilarious stories of him dreaming he is wrestling with his brothers only to be found on the floor wrestling the dog or waking up my mom in a panic telling her the floor is lava). His facial expression has changed, he blinks less often - which makes it look like he is staring while his face is super lax - kind of scary. He has bouts of crippling anxiety - so much so that he has begun to avoid going out though on the side he is a drummer in a band and loves to socialize. He watches It's a Wonderful Life every year, but the last two years he has cried through the whole thing. But he's not 'depressed' in the technical sense - it is more anxiety and the wrong emotional or too much or too little emotional output. His interest in food has waned - he used to finish all the food on the table - he would have all the serving dishes in front of him by the end of dinner - now he finishes what is on his plate most of the time. He can't keep weight on. He says he feels like he can't swallow, but he's been to the doctor who sent him to a neurologist who only diagnosed the REM disorder, but ignored the other issues. He's definitely getting worse and it is affecting his relationship with my mom and his ability to handle the world. Has anyone here had a family or friend diagnosed prior to tremors or other motor symptoms of this disease? Does anyone have advice for talking with a neurologist to get them to 'rule out' Parkinson's? We would love to see him get this anxiety under control, but conventional psychotherapy and medication do not work. Thank you all and I wish that you have a wonderful week.
  7. Hello, Last month I had a moment in which time stopped. It was during my class in which we were learning about the neurotransmitter dopamine. The power point flashed with a description of symptoms: loss of sense of smell, anxiety, depression, trouble swallowing or a feeling of difficulty swallowing, REM disorder, personality change, loss of facial expression... All of which completely describe my dad's issues which have gotten significantly worse over the last two years. He's already been to a neurologist who only diagnosed him with REM disorder, ignoring all the other symptoms he has been having. They live in Buffalo, NY - and I think he should see another neurologist, but I don't know where to start. I've been searching online but all I see is doctors who are working with motor symptoms - but it seems that even though the literature states that NMS are often present years before motor symptoms doctors are not diagnosing until motor symptoms are clear and present. The shear amount of anxiety he is having is starting to wear on the entire family and the personality changes and inability to concentrate are exhausting. The REM disorder is getting worse and becoming a danger - which he then feels even worse about though he can't remember what he did in his sleep. We really want him to get some sort of relief to the point where he can enjoy life more than he does now - he just turned 53 today. My question is how do I find a doctor who can assess non-motor symptoms and start him on some kind of treatment to alleviate some of the issues? What do we look for in a doctor? How do we talk to the doctor about our concerns?
  8. Hi, my dad is 89-years-old, and he has had Parkinson's for about nine years. He is currently on 25/100 Sinemet which he takes three times a day at 6am., 12p.m. and 6p.m. He also takes Aricept for dementia at 6p.m., and he recently started taking clonazepam (1/4 of a tablet) at bedtime to help with his sleep disturbance, but it makes him very drowsy. He was having a lot of nightmares and vivid dreams which caused him to wake up confused and often hallucinate. He would also try to get out the bed. The clonazepam seems to be working, but he still gets confused and hallucinates during the day sometimes, and he is having a lot of problems with excess saliva and drooling due to swallowing problems, although he still eats very well. Also, he does walk with assistance via the use of a gait belt, but his legs freezes up on him sometimes. Here are my questions: 1. His doctor recently suggested that he use benztropine (1mg.) for the excess saliva on an as needed basis, but based on the research I have done so far, I am concerned that this medication will cause him to hallucinate and be more confused due to his age. Also, some of the research that I have read indicate that this medication will not be effective unless taken regulary. Do you think we should try this medication or not? (We currenlty give him ice chips, sugarless candy and apple cider vinegar w/ water to help with drooling and digestive issues.) 2. I want to start giving my dad his 6p.m. Sinemet at 5p.m. instead so he can have more time to digest his food. Currently, he eats dinner at 7p.m. to make sure that the Sinemet has time to go through his system, but he usually goes to bed at 8:30p.m or 9p.m. Will there be any negative effects from changing the time of this medication, and how much time should he have to digest his food before sleeping?
  9. Dr. Mahler

    Swallowing and Diet

    Many people with Parkinson disease experience some difficulty with eating. Multiple aspects of eating are important. Diet is about what you eat and drink to maintain hydration and nutrition. Registered dieticians are the experts in this area. Other important aspects of eating are concerned with the consistency of foods that you eat and how to swallow them safely to maximize safe and efficient swallowing. Speech-language pathologists are the experts in these areas. We welcome your questions, concerns and comments on this website regarding swallowing or diet consistency or how to take pills safely. Looking forward to hearing from you. Please let us know about any topics that you would like us to write about in forum posts. Sincerely, Leslie Mahler, PhD, CCC-SLP