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Everything posted by Superdecooper

  1. Superdecooper

    High blood pressure and PD

    Hi Mark, my blood pressure seems to be really good these days. It hovers around 125/80 and 116/65. My GP has cut back on my blood pressure meds because he is concerned that diastolic numbers at or below 60 are worrisome. I'm on two tablets of 20 mg Lisinopril and one tablet of Amlodopine, which he just cut in half to 2.5 mg per day. That did raise my numbers a little, but they appear to be dropping again. In addition to taking Azilect, I swim a mile each day and routinely walk about 3 miles a day for work. Im not having any dizzy spells at all or trouble getting up and wanting to fall over.... but I am taking PT for balance and gait therapy working on my vestibular system and priproception . I've never had blood pressure this low in my adult life... I'm just wondering if I should ask him to cut back on the blood pressure meds again and how many weeks should I track my blood pressure before making the request. Also, would it be better to stop taking the amlodopine or just cut back the Lisinopril -S
  2. Superdecooper

    High blood pressure and PD

    Thanks this was very helpful. -S
  3. Superdecooper

    sleep apnea and cognative decline in pd

    wow johnny, 25 incidents seems pretty high. When is the last time you had your mask refit. Also, they make a special pillow for cpap users. Maybe your provider can get one for you. I think they cost between 40 and 60 bucks. They are kinda shaped like a T. -S
  4. Superdecooper

    sleep apnea and cognative decline in pd

    I just talked to a specialist about this on Friday. She told me I should have my sleep study redone, since my incidences of sleep interruption are pretty low - 1- 5 per hour. (I know someone who has 15 to 20 per hour). She said I should be tested for Rem sleep behavior disorder - which is a different test from the sleep apnea test. My cpap usuage has cut down on the snoring and jerking awake gasping for air.
  5. Dr. Okun, I’m scheduled to go to an MDS next week for a second opinion on a diagnosis of Essential Tremor and I’m wondering what part of my medical history is significant enough to bring up with the doctor. A general neurologist examined me in September and performed a series of tests (EEG, nerve and muscle) but didn’t really go over my medical history that closely. I already had MRIs of my brain, cervical and lumbar spine. (the spinal scans were because of a cervical fusion in 2003, lumbar scans (2017) were from an on-going bulging disc at L5S1, SI joint inflammation and osteoarthritis, and the brain scan (2015) from hypogonadism. I went to the neurologist in September because I developed a tremor, that I only noticed when I was holding a coffee cup or reading the paper, about 2 years ago – I ignored it. My wife noticed it roughly a year ago – also ignored her. About 6 months ago I started dropping things and my handwriting became unreadable – too big and too small. The tremor is only on my dominant hand. The neurologist said I had weakness in my right side – he attributed that to arthritis, rotator cuff surgeries on my right shoulder and the cervical fusion- and weakness in my legs, which he attributed to the lumbar disc and bone spurs. The week before the neurologist diagnosed me with ET, I developed a persistent tremor in my right index finger that is noticeable when I rest my hand on a desk, mouse, lap. I can ignore it by moving my hand position, but if I make an effort to stop it by thinking, it generally worsens and causes a full on arm tremor. I’ve also developed painful, writer’s cramp in my hand that is almost constant, and a shoulder ache that comes and goes. – when it’s present, the pain might slow my arm swing some but I’d need someone else to tell me because I can’t observe that directly. IThe problem of dropping things is increasing and while driving my right hand actually unclasp from the steering wheel, twice. As far as any non motor symptoms go, I seem to be hitting the jackpot on a few issues- some are common to PD others shared with Essential Tremor. I have sleep apnea treated by a cpap machine, melatonin- resistant insomnia (I get about 4/5 hours until roughly 430 am), vivid dreaming, some kicking in my sleep (my wife says), and that weird sensation of almost waking up but cant move my body, vitamin D deficiency, high blood pressure, mild depression and lots of apathy, low testosterone, partial loss of smell, sensitivity to cold, and super tight hamstrings and back muscles (according to all of my massage therapists). There might be more, but I’m actively ignoring as many health problems as possible so they will go away! I'm taking meds for a blood pressure, low T, and physical therapy and meds for arthritis pain in my joints. So, does this sound like presentation of an Essential Tremor patient or is this closer to what you’d see in a Parkinson’s patient? Does the MDS need all this information? Should I seek a Datscan or a Sinemet challenge? -S
  6. Superdecooper

    Upcoming MDS visit for second opinion on Essential Tremor

    Hey Dr. O, just an update. I'm getting a second opinion in June, but I admit I'm getting tired of waiting for more symptoms to be under control. The Azilect I've been taking since January seems to have had the most impact on my sleep problems with insomnia and RBD. I'm up to about 6 hours a night of sleep, with less sweating and fewer nights with vivid dreams and no more kicking in my sleep or waking up unable to move. So that's good. No impact on the dystonia in my dominant right hand and no impact on the tremor or on Apathy. My doc still wants to take a wait and see approach for another 3 months. I did have a chance to talk briefly with a couple of MDS from university of Maryland at a PD conference yesterday, and both rejected the idea that Percocet would skew the results of a Datscan into being a false positive - which is what my current physician suspects since my Tremor shows some evidence of entrainment. -S
  7. Superdecooper

    Welcome to the club

    Hi Gang, I thought I'd post a short note on this forum. Following a positive Datscan two weeks ago, my MDS diagnosed a dopamine deficiency, with very early onset of PD symptoms. The MDS said my mild motor issues, including some with a psychogenic overlay, don't rise to the level of full blown Parkinson's disease. However, the non motor symptoms definitely raise the prospect of PD, so he's starting me on Azilect later this month in hopes of keeping me from developing into Parkinsons in the coming years. I'll get another Datscan next year, but he expects that will also come back positive for PD. I'm not sure how you can have a lack of dopamine causing a resting tremor, apathy, right side stiffness, insomnia, night sweats, vivid dreams and kicking, diminished sense of smell, painful dystonia and small handwriting, low testosterone, reduced arm swing and dropping things and not have PD. But, I'll go with the diagnosis for now as long as the Azilect begins to address all that in the next three months. Looks like we caught this early and might have a chance to head things off. So welcome, or something. If anyone has a similar story, I'd sure like to hear it. -S
  8. Superdecooper

    Welcome to the club

    Hey Hiker, Yes, I spent a lot of time on the blue foam pads trying to walk without falling off. I'm sure I hate that. The pads were placed in a straight line on the floor at the base of a parallel balance beam bar. I had to walk on those blue foam things with my eyes open and closed. She said that was to help my perception and balance. I also had to walk side ways along a straight line and squat like i was sitting in a chair without falling over. I had to walk on a treadmill - moving slowly - and look around the room for small dots of color on the walls, and doors, etc - without falling over. There was other stuff too. Level of tiredness after doing them 1 or 2. Level of frustration: 7. -S
  9. Superdecooper

    best source for CoQ10

    what is CoQ10 good for?
  10. Superdecooper

    Welcome to the club

    So, the therapist did a 15 minute falling test...could have been the mini-BEST test that has a bunch of movements like timing how long it takes you to stand up, can you walk and turn quickly while counting backwards, etc. The cutoff for being at risk of falling was 23 and below, and I scored 24 or 25 - so she said I am just above borderline and there's some exercises I have to do. im not sure yet what exercises are supposed to work on what problem, but it was a lot of walking on the treadmill sideways, walking along a straight line also side ways, etc. Seriously! I'm only 56. I really don't think this is normal that I'm just skirting a falling test. and finally, I thought my current PD doc was an MDS. He's not, he's just a Fellow - which I guess is an MDS in training. So I'm definitely getting a second opinion. I have an appointment with an MDS in June at Johns Hopkins, but my wife wants me to find another physician sooner rather than wait. However getting appointments with an MDS take quite a long time. I called one recommended by the local PD support group, but his earliest appointment was mid June.
  11. Superdecooper

    Young onset PD testing

    Good point DaveN, my wife says my sense of smell is terrible. I disagree. So we just leave it at that. I don't know what I'm missing until she points it out. -S
  12. Superdecooper

    Welcome to the club

    I don't know yet. She just did the evaluation today. I go back on Monday. I'm sure it's going to be some type of exercise I will have to repeat over and over again until I die of boredom or pain! She sort of scared me into coming in for treatment....You could ignore this, but you won't like how it turns out... would you like to hear some horror stories?
  13. Superdecooper

    Welcome to the club

    Hi Gang, Just came back from a Physical Therapist evaluation for freezing, etc. She says I'm having problems with my brain's vestibular system, which controls balance and stability. I passed most of the tests, but i'm having some problems walking a straight line, foot dragging and perception of objects in space. I'm using my eyesight to over compensate for what my brain should be doing to correct my balance. The therapist said I should get the tools now to deal with balance issues, rather than wait for the problem to fully develop and then try to address it. So, it's 8 weeks of therapy (twice a week). -S
  14. https://www.pbs.org/wgbh/frontline/film/parkinsons/ i was doing some reading and found this special on PD. It's called My Father, My Brother and Me. I found it pretty interesting. -S In 2004, journalist Dave Iverson received the same news that had been delivered to his father and older brother years earlier: He had Parkinson’s disease, a degenerative neurological disorder that affects about one million Americans. In a FRONTLINE and ITVS joint production, Iverson sets off on a personal journey to explore the scientific, ethical and political debates that surround Parkinson’s, a disease at the center of the ongoing controversy over embryonic stem cell research. Iverson talks to scientists on the cutting edge of new cures and therapies for Parkinson’s as well as a number of other major neurological conditions. And he has intimate conversations with fellow Parkinson’s sufferers like actor Michael J. Fox and writer Michael Kinsley.
  15. Superdecooper

    I'm back after surgery

    Mark, Ummm, half life? I'm sure I don't know anything about this concept. As it relates to Azilect, does that mean in 6 hours the medicine and benefits from taking it have worn off? -S
  16. Superdecooper

    Young onset PD testing

    I hope this is not a silly question, but how much of a distance? Do you mean whether you can smell it once you enter the room or can you smell it from upstairs? For me, I mostly have to have those things right under my nose to get a smell. That's quite a reduction from being able to wake up and smell the coffee brewing while lying in bed. -S
  17. Superdecooper

    So it's PD not APS?

    hey Kaypeeoh, just checking in with you. So your doc diagnosed you with PD? and put you on Sinemet? Are you getting a Datscan to confirm? -S
  18. Superdecooper

    Just go through the door already!

    hey gang, Anyone have trouble getting through doors smoothly? It's like I'm walking just fine and I get to a door way and things seem to slow down for a moment and I hesitate. It feels like I cant judge the size of the door frame properly, especially if it's narrow or partly closed, or I'm concerned about hitting the frame with my arm or hand. It's kinda wacky. I just noticed myself doing this over the last two weeks. Feels like I'm walking into a sheet of plastic wrap or something. looking for answers here? -S
  19. Superdecooper

    Just go through the door already!

    Thanks LAD, that article was super helpful. My chiropractor said I should visualize the area beyond the door - which is just what this article recommends also: "Patients who “freeze” in a particular place, such as a doorway, should try to visualize the area beyond the obstacle. Once the object is passed, freezing generally resolves. Physiotherapists and other health professionals offer important gait rehabilitation programs to enable people with Parkinson’s disease to improve their movements and safety." She also said that since I've stopped swimming temporarily because of an ear infection - for about week now - the lack of exercise has already noticeably changed the density of my muscles (more stiffness) and it may have already had an impact on my brain's usage/level of dopamine - an impact that may include less flexibility and problems with perception of my body in relation to other objects, such as doors, surfaces, etc. Go back to the gym immediately. Try the elliptical machine, bike, or anything that keeps me moving without heavy impact, she said. -S
  20. Superdecooper

    Father with PD coping with alcohol

    Hi Bedunton, I know lots about dealing with chronic illness and also about alcoholism. Seems like your Dad is facing two problems - although they may look like one. Is his PD under control with meds? or is he choosing to mix PD meds with alcohol, or is he skipping PD meds entirely and just consuming alcohol? Seems like, from your description, that his alcohol use could be a result of his loss of employment status, or it could be tied to his health status. Either way, as an adult child, you are going to need some counseling on how to deal with him in this state. I'd look into an ACOA - adult children of alcoholics program which are usually local and free - to get a grip on how you react to him. It's easy to fall into a cycle of despair and anger, but you really want to have self control over your emotions and reactions. You have no control over your Dad's actions. But once you get control over yours, then you will have the courage to set the right boundaries for how you will deal with him. -S
  21. Superdecooper

    Welcome to the club

    Hi Sherrie, I have that book Brain Storms. I've read about two chapters. It's interesting. So you're hoping you wake up one morning and notice less symptoms and then it gradually goes away once your body realizes you are not taking the first medicine that caused the problem... that your doc is wrong and drug induced PD is not masking idiopathic PD - and soon this bad dream will be over. Did you have a DAtscan? You sound like you are coping with things okay. so am I. Humor helps as does having a few friends and family members to talk to when things seem terrible. And of course, music. I've been listening to Andy Grammar, "Keep you head up." that makes me smile. In the meantime, i guess you're taking the new PD meds and exercising daily and thinking positive thoughts, right? I guess that all any of us can do. Let me know the secret to getting to acceptance if you find it. I'm still pretty far away yet... -S
  22. Superdecooper

    Welcome to the club

    So, note to self: do not sleep without a cotton t-shirt on or your wife will look at you very strangely in the morning and say, "I had to sleep on the edge of the bed to get away from all the night sweating from you! All the way over here!" ....Oh man. Yikes. Also, Kinda funny, but okay, I get it... stupid PD is affecting both of us.. So maybe the Azilect is only having a partial effect on sleep symptoms. But also, I need to get back to daily swimming again. I haven't been swimming since last Thursday. I have to wait another six more days for my ear infection to clear up... -S
  23. Superdecooper

    Welcome to the club

    Just had a conversation with my older brother and sister to let them know what's going on with me. They took it pretty well. I showed them the tremor that my hand and fingers are doing. They said, "grandma use to have the shakes just like that." I had no idea. Oh, and one other thing. my blood pressure has dropped low enough for my doctor to cut back on some of my blood pressure medicine. He's not worried, unless the bottom number drops to 60 or below. It's been in the mid to upper 60s for the last couple of weeks. -S
  24. Superdecooper

    Bipolar and parkinsons

    What a coincidence. A very good friend of mine who is helping me adjust to PD just sent me a link to her own struggle with being bipolar.. She's a fellow journalist who also works on Capitol Hill ... http://www.nytimes.com/2012/01/18/opinion/my-so-called-bipolar-life.html
  25. Superdecooper


    Interesting read. without a doubt, I'm definitely dealing with this. Uggh. Make it stop! -S