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Found 24 results

  1. Donco13


    Im in las vegas. Thought I had a decent team to help. Finding out you have little to no options makes a person feel lost. Have had a difficult time with doctors since i have been diagnosed. From a failure of a referred neurologist to a good doctor that didnt have time for me and i suffered. A failed DBS attempt due to anatomy issues, it took another doctor and a new facility to finally perform the procedure with my anatomy. Now I have the DBS. Im havent been balanced (feel somewwhat normal) since a week before the dbs when my back locked up from spasm and ended up in the er. I need this thing turned on . And my neuro is not available. due to issues at his office. ONE OF 2 NEUROLOGISTS MDS IN TOWN TAKES MY INSURANCE. iS THERE SOMEONE YOU CAN RECOMEND AT BARROW IN PHEONIX THANK YOU INEED OF HELP ASAP.
  2. Foot dystonia's getting more uncomfortable, esp. while driving. Saw my MDS last week (first visit in 10 months)and he suggested trying botox. Other than the dystonia, I'm doing well--a bit more tremor but four years post-dx, still not much change. I have a friend who's had very dramatic improvement from botox (she goes from barely able to walk before treatment to jumping rope after), so I made an appointment. This will be about a month from now. Two weeks after that, my wife and I are headed to Finland for a couple weeks, including 5 days backpacking in Lapland. Question for those who've had botox: have you been happy with the results? Any trouble getting insurance to cover it? Any side effects that would make walking, esp. vigorous hiking, difficult? (Obviously I'm hoping for the opposite.) Thanks.
  3. Wrkjnky13

    Dr Glickman

    Has anyone used Dr Glickman in Las Vegas Nevada? Due to the size/ shape of my head , I need a frameless procedure. Dr Glickman uses the nexframe design. Looking for some background information on him and the nexframe design. Due to a failed procedure and a lack of options he is the only option besides traveling. Im trying to avoid another failed procedure Go figure Dr fails to measure my head and procedure gets cancelled and my insurance gets bulled 13k. In which I have to pay the deductible and coinsurance. And pay for sn additional procedure Any help is appreciated Don Las Vegas Nevada
  4. I am diagnosed about 1 year but I have had symptoms for longer Does anyone else get freezing whilst using the computer mouse? I have had it a number of times mostly using the mouse and doing a lot of micro movements. All of a sudden I cannot move or push the mouse at all.
  5. Loving Parent

    Loving Parent

    I am new to this site but really need some support. I have a 38 year old daughter who was diagnosed in August. She is married with two young children. I am having the hardest time accepting she is ill. Her father and I are divorced and I have slumped into a major depression. I feel so alone with this. I am always sad. Being in my 60s, I would be so much happier if it was me and not her having to deal with this illness. I am curious how other parents of young onset PD have handled this. What hurts me even more is that she is such a good woman and has worked so hard in her life to do everything right. It is so hard to experience something like this with our children no matter what age they are. I would appreciate any input. Thank you.
  6. Hi everyone, I’m sort of freaking out. about 3 days ago I started getting this weird weakness and twitching in my right index finger and thumb. It was happening like once a minute all the time. It’s not quite pill-rolling...I don’t even know if it’s a tremor or not. It’s not shaky just...twitchy. Sometimes I can feel it but not see it. It’s subtle. I have extreme health anxiety and so I started to focus on it and freak out and immediately think PD. I spoke to a primary care doctor who basically laughed at me, but I really am worried something is going on. It’s just like constant. More so when I’m relaxed but it has happened also when I’m typing or holding my phone or other stuff. I have no other symptoms. I guess there is some weakness in my arms but I don’t know how much of that is my anxiety tryinf to convince me I have something. The doctor thought maybe it was anxiety or stress related since I’ve been really really stressed lately (hair falling out, insomnia, panic attacks) and she thought maybe t was from having a long written exam last Wednesday...idk if I buy it. Should I just listen to her and drop it? Or does this sound concerning to anyone? I read online that this is like the first symptom of PD. I’m sorry; I’m like REALLY panicking.
  7. Hello, My husband has YOPD, currently 36 and 6 yrs post diagnosis. In the past 5 weeks, he has had 4 episodes of specific, total disorientation. He does not remember these events at all. The episodes last 30~ minutes. He is confused about his location, what he is doing, where he is in time, what's happening, etc. He is visibly mentally altered in behavior and speech. It is pretty sudden onset, then it ends and he returns to normal mental functioning. He has no memory of the time he was altered. He is very tired after this happens. We are having an EEG, which may give info. Does this sound like the onset of PD dementia? Or something else, like a seizure episode? Or...? Any ideas you have would be helpful as we try to figure this out. Meds: Rytary 61.25, 10 per day (3, 2, 3, 2) Amantadine 2x/day Pristiq 50 Wellbutrin SR 100 Neurontin 300, 3 pills 3x/day Klonopin .5, .5, 1 at bedtime prilosec diuretic (forget name) Senna OTC laxative In case it is relevant, he had 7 ECT sessions in May 2016 for severe depression (lifesaver!!!). THANK YOU. This is very weird and rather scary. :/
  8. Hello, After a month of many tests, my husband was officially diagnosed with YOPD this week. We knew this was a possibility as we were going though testing, but the official diagnosis knocked me off of my feet. We are in the early stages of the disease and just started the Neupro patch yesterday. He is still able to function fairly normally, but has difficulty with writing and typing. We are hoping we can put off Levodopa as long as we can. My husband is only 30, we have a little boy who is a year and a half and were contemplating having another child - and then this huge life changing diagnosis has sent my view of our future in free fall. Our friends and family have been very supportive, but no one knows what to say or how to help. I wouldn't either if I were on their side of the situation. The future is so unknown and some of the posts I have seen on these message boards have really worried me on what we could face down the line. I feel so selfish that I am concerned about how it wil affect me, and not how it will affect my husband. I am all over the place with this post, so I do apologize. I am just hoping someone out there can relate to this post somehow and will be able to give some advice or words of wisdom as we embark on the terrifyingly unknown path that YOPD has in store for us. Thank you.
  9. Hi Dr, I posted this on the YOPD forum but someone suggested I'd post it here as well. In your opinion, what should a newly diagnosed person ask his or her MDS on their first official appointment? I asked a thousand things but perhaps another person is short of ideas. I think it might come in handy to have a list of things to ask. Thanks!
  10. Hello, This is my first post. I have enjoyed reading and educating myself on here. I was just diganosed in May 2017. I year ago I was diagnosed with Hypo Aldosertonism (rare Kydney disease). For the longest time, I blamed my symptoms on that but my levels were good. I was sent to a nuerologist and after several clinical test and an adnormal Dat scan I was diagnosed with YOPD at 43. I am on Ropinorole extended release, started me out with 2mg for a week, then 4 for a week, now 6 for this week. and 8mg next week. Is this an average dose? what should I expect? My symptoms are: extreme fatique, inconsistent tremor in right hand, slowness on right side, and I also shake upper body-(more on right side) when Yawning, I get extremely sore all over and especially in neck and back. I jerk and shake all night long about every 45 sec or so, resulting in no sleep. I guess what I am trying to ask is what do I look for? Medicene has helped sleep and shakiness some but still have symptoms come and go. Is all of this normal? thanks for you time...Stu
  11. I am currently working on a project for my Global Health Policy class at Harvard. I have selected Young Onset Parkinson's Disease (YOPD) as my topic. I would like to address the health problem related to under-diagnosis of the disease for younger populations. Specifically, I would like to look at how quality of life could be improved with better and earlier diagnosis. As part of my project I would like to interview some people who have been diagnosed with YOPD and compile their stories into a podcast, article or blogpost. Hopefully, this would build awareness for others who may be experiencing symptoms but are unsure what to do. Can you help with this project? Whether you can help with an interview or not, please answer this survey: https://goo.gl/forms/pNox8Ka42PnYIdpv2
  12. Jami D

    Rock Steady Boxing

    Just had my assessment to join our Rock Steady Boxing class here in Birmingham!! I am so excited about this group. For some reason this type of program has got me more pumped and motivated to exercise than my normal routine since my diagnosis in April, which was doing a workout in a gym I found through Davis Phinney. The workout was great but I was struggling with self motivation. My right arm decided last Wednesday that ii was feeling left out I guess and wanted to join in the game so I now have a bilateral upper body tremor and this sudden unexpected symptom change really kind of messed with my head. I am finding out very quickly that this disease is so unpredictable. My trainer Martin is amazing and talented and truly has a special place in his heart for PWP. The movements and exercises are a real challenge and I really needed someone to help remind me what I can do instead of living in the negative mind set it is so easy to fall into. I haven't even had my first full session and I am already feeling the mental benefits of finding a way to exercise that truly seems beneficial in our fight!! If anyone is lucky enough to have this program in your area, please give it a shot!! I can't wait to meet the others in my class and work together to fight, laugh and enjoy life!! Jami D.
  13. You are a relatively young person that has just been diagnosed with PD. Do you live for today or plan for tomorrow? I've heard many people say to live for today because the future is uncertain. Is PD so serious that you don't have a future? If you continue life as normal and plan for tomorrow, are you giving up a good life today while planning for a bright future that will never happen? What say you?
  14. 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!
  15. TheJoe

    It's Official

    Well it's official. I have young onset Parkinson's disease. The doctor and I suspected as much for awhile so I'm a little surprised that with the news I still feel sad and a little overwhelmed. I'm happy to have an answer and sad that I have an answer at the same time. I'm going to be sent to a movement disorder specialist to sign off on the diagnosis and treatment. We are going to end the Sinemet trial and start an agonist like Requip soon.
  16. After hearing you have Parkinson's not less than a month ago. I have had to put down my long time friend and companion dog down, because he was so sick and unable to eat. The emotional stress of this just sent my tremor in to a whole new level. Usually it is barely visible but once my dog was gone and I was crying nothing stopped it and I felt like my whole arm was going to shake right off. (No one was kidding when they said emotions affect your tremor) Still trying to get used to all of this and all the appointments and treatment planning. Does it get any better??? I feel like Fontaine in Le Mis. when she sang I dreamed a dream. I am trying to stay positive and keep myself out of depression, but damn this just keeps coming. Thanks everyone for listening, just need a place to vent. Sometime I feel alone even though I have tons of family support. Blessings Adam
  17. Dr. Okun - I do understand that everyone's PD progresses differently. However, as someone with YOPD, symptoms since 2009 and diagnosis in 2012, now age 49, I have been taking Requip with Azilect and amantadine for two years now. Only recently have my symptoms worsened, so that now I have a number of breakthrough symptoms such as tremor, leg dragging, insomnia, foot cramping, a number of dystonias, and so on. I am a runner, but that ability has been noticeably cut back by the gait issue. What factors do you consider concerning the "right" time to switch to Sinemet from DAs? I am very, very concerned about getting dyskinesias because I think I hit 3 of the 4 risk factors - white, female, thin, with the missing 4th being dose of Sinemet. And once you're on Sinemet, is there no going back to DAs if dyskinesias get bad? Thank you.
  18. lasthopeforhelp

    28 years old

    I am a 28 year female. My symptoms began in my early 20's. I first noticed fatigue. It was annoying at first and then became crippling. I am always nauseated after I eat. I've changed my diet numerous times without improvement. At times I feel really really bad. So tired, my muscles ache, I get weak. Then I feel better for a period of time. Then it happens again. And again. Each time is a little worse than the one before and I seem to pick up new symptoms. I have issues with my sleep that pointed to narcolepsy, but my sleep study came back fine. Last year after a miscarriage I noticed a tremor in my hand and weakness in my legs. I went to the Dr. took iron pills (my iron wasnt technically low). The shaking went away. Then it came back. I suffered from back pain during my most recent pregnancy and got assigned physical therapy about a month ago after her birth. I mentioned that periodically I have weakness in my arms and legs and an increasing tremor that gets better and worse. She tested my joints and said I have cogwheel rigidity and weakness and slowness in my right side. I am dizzy a lot too. I am forgetful and I never use to be. At times it feels like I am living in a fog, I have trouble with my words. Typing is getting harder, mostly in my right hand. I have had an MRI about 1.5 years ago because the eye Dr. said I had a bulging disc. So I know I don't have a brain tumor! The Dr. just did an autoimmune panel and it came back negative I never considered parkinsons but the Dr. tested my joints after I told him what the PT said her stated "if you were 80, I'd say parkinsons" after doing research I now know it can happen at a young age. Does this sound like YOPD? What type of Dr. do I go to for a diagnosis? I am tired and scared. It keeps getting worse. Very slowly, but undoubtedly so. I have two young children and am beginning to really struggle with taking care of them and working. Dr's seem to just say I'm anxious and send me on my way. Is there any other reason for cogwheel rigidity? Does Multiple Sclerosis present with cogwheel rigidity? Thank you for your time.
  19. metfan31

    be a Survivor

    Okay I'm requesting support from all of you on this and here is why: It may be soft at times, but We have a voice, let us use it! I believe if enough of you go to YouTube, hit 'like' and comment on the following that we can get the attention of the casting team, who may cast me, or some other PWP. I am 34 years old, Dxd with YOPD in Oct 2013, I am married (10yrs), have 3 healthy happy sons, & one more in heaven, I work from home full time, and these are just the basic facts... For a long time it has been a dream or unrealistic goal of mine to get onto CBS Survivor (reality TV show). For a while I wanted to do this to show the world that life does go on for grieving parents. This was before Dx with PD. It felt like I would need to start trying before I got too old, and that time was my biggest opposition. Now since Dx I now also think it would be cool to let the world see another side of PD (very young and very early in the disease). Mostly now I know I want to do this for myself as an once in a lifetime adventure, but since starting meds I now know that it wasn't just getting old, but getting sicker. Therefore pressures of time seem all the more oppressive, as none of us PWP know how long we'll be able to function as well as we need to. I recently made a new audition video for Survivor Casting that includes the fact that I have PD, and I have submitted it to them. Sending in a video to them is the equivalent of tossing a penny into a fountain and making a wish. With time running against me I am more determined to try every resource I have to get their attention, and I would like to appeal my fellow PWP to show exactly how many of us there are and that we support each other. I'm not asking for any money or anyone to go public, but simply go onto YouTube, watch my 3 minute video, give it a thumbs up, and if compelled; make a comment about how it would be nice to see a PWP on Survivor. Link to video https://www.youtube.com/watch?v=QP7rov-mcbE To 'like' it on YouTube you have to go to the actual website (click on 'youtube' logo in the bottom right corner to go there) and be a registered user. If you are not already registered I am not asking you to do so on my behalf, but YouTube is free to use and register. Please don't think I am spamming the website as a few days ago I posted this within another topic, but now it should have its own string on here to make sure more people see it. If you have any feedback I'm open to it, be it about the video or my request to get your support. My goal is not to take advantage of others with the same affliction and I do not wish to bring any additional stress as I personally know the damage that wields. Thank You Richard aka Metfan31 aka Captain Irish...
  20. So two days ago when diagnosed - and after a two year period of observing myself having issues (and the occasional doctor visit and a couple of rheumatologists visits to rule out arthritic conditions), I had my answer. So what did I do? Cry? No. Did I celebrate that I had an answer and that I wasn't some crazy stiff and shaky hypochondriac? No. I did what many of you did. I went back to work the very day of my appointment. Kind of interesting that I am a psychotherapist. I did groups and individual sessions with people who are depressed - many of whom live in an affluent area (Johnson County, Kansas). Did my empathy suffer? No. Not a single thought such as "You think you have problems because you are not sure why you are depressed and can't decide between the new Lexus of the Land Rover?" Nope. I still felt compassion and upliftingly directed them to be mindful of their thoughts and feelings and engage in healthy behaviors. I went home, told the wife. My 17 year old daughter was concerned. My 12 year old son (who has mild Asperger's) asked me if I was going to die. I told him that I would be fine, maybe just struggle more with some tasks. I didn't tell my 21 year old - that lives out of the home with his new family and their two new babies. I didn't want him to know yet. My wife said "I just can't picture you being disabled some day". We ate dinner, watched TV and I woke up the next morning and wolfed down an Azilect (and regretted it too because I have gluten intolerance and my choices of food are limited anyway - now I have to worry about all sorts of MAO interactions). After all the "Parkinson's for Dummies" book said that it will not kill you and that there is probably a cure around the corner. Just another day at the office, right folks? That was the day before yesterday. And then yesterday, I decided to leave work on a short walk. I hobbled across a busy intersection and almost slipped climbing a grassy slick embankment. I made it to a coffee shop and reached in my wallet to grab my debit card - which somehow decided to elude my grip and sail to the floor. I picked it up and then reached for the piping hot coffee. Now I have to be extra careful. I managed to juggle it to a table and sat down. Then it hit. Sadness. Was it the new medicine - or was it ... oh, crap "I have Parkinson's - my life will be different." I am technologically gifted, so I therapeutically stayed up late and made my own little Pdude website (despite problems typing) and felt almost a sense of serenity. Thanks for listening.
  21. BrianT

    Where are you?

    Where are us YOPD people located? We know there are few of us (%). Us YOPD operate differently the our older peers. We think the needs we have are different. Perhaps some regional or growth to YOPD support groups will be the outcome of my question. btw - Grand Rapids, Michigan (4/29/2011).
  22. Sleep_Paralysis

    Telling a 'new' romantic interest...

    The title may be misleading. Some background: I am quite young. You could say just enough that a diagnoses would not fall under 'juvi PD'. That's about as much as I'd like to share about my age. I suspect I have parkinsons. My father has it. Family doctor is concenred, blood test + CAT scan done (no results shared yet) sleep study, neuroligist apointment upcoming probablly in a few weeks time. I won't worry anyone with my list of symptoms, as many of you I'm sure are familiar with them. Suffice to say my movment has become very stiff, and negotiating anything with my left hand is becoming increasingly difficult.. I can barley keep anything down, and my balance has suffered to the point I have almost fallen a number of times, usually however due to carelessness. ( I guess I did list some symptoms huh?) I know many of you will say "Dude, you don't even know if you have PD" but lets assume that I probablly do, where to go from here? I'm sorry about the long post... I'm just unsure of what to do. Thanks, SP
  23. 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?
  24. Annual Wellness Symposium and Young Onset Parkinson’s Conference June 15 -16 in Irvine, CA NPF is joining it’s Orange County Chapter (NPFOCC) and APDA to bring you a unique learning opportunity: NPFOCC Annual Wellness Symposium followed by the NPF/APDA Young Onset Parkinson Conference. These two events offer sessions for people of all ages who are living with Parkinson's, as well as an opportunity to network with peers from around the country. For more details and to register for the in-person event click here: http://parkinson.org/YOPC If you cannot make it to Orange County, California then join us on Saturday via Live Webcast ! For more details call 1-800-473-4636 (800-4PD-INFO). Help spread the word – Forward this email to a friend!