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Superdecooper

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Everything posted by Superdecooper

  1. 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
  2. Superdecooper

    Welcome to the club

    I cant give you an answer, but you aren't the first person to ask the question. Try giving the Parkinson hotline a call at 1-800-473-4636 and talk to a nurse case manager specialist person. They are very helpful. Submit the question to the Ask the Doctor forum, and here's a discussion ..
  3. Superdecooper

    Sleep

    Oto, sorry to hear about your troubles. They sound just like my troubles. Melatonin doesn’t work for me. Unless I stay off of it for about a month and then take a 20mg dose. Then it still might not do much. Maybe you should get a sleep study. My MDs is the third doctor to tell me to get one, so I finally gave in and said Yes after my wife said Or Else! the other way to get some sleep is to totally exhaust myself so that I:running on fumes. Then I get about 7 or 8 hours of sleep. But it takes a lot to exhaust me. Some thing like walking 5 miles, then swimming for an hour, then doing laundry, then I might get a full night sleep —- but. Might still dream just be too tired to wake up. And so it goes...
  4. Superdecooper

    Sleep

    Two nights ago I Woke up from a bad dream, yelling at my Wife. Bolted upright and tried to get out of bed. I think The tubes from My cpap machine stopped me. Took them off and went to the bathroom. My shirt was soaking wet. I got back in bed and went back to sleep wondering why my wife was holding me so closely. I only remembered half of that when I woke up. She said I yelled, “oh no I forgot that..” I had a bad dream about dropping something. She said I need to go get tested ASAP for rem sleep behavior disorder and no more tv or computer right before bed.  I Emailed my MDS and he made a referral for a sleep study at Johns Hopkins. ugggh..more testing. I seem to have a brain that keeps on giving... -S
  5. Superdecooper

    Welcome to the club

    Hey Mip, inhave idiopathic Parkinsonism. Which means the docs don’t know why I’m so lucky. I believe drug induced Parkinsonism means it’s a result of medicine you took, and sometimes it’s reversible and sometimes not depending on how much damage the meds did to the dopamine receptors. I’m not an expert. There is a forum on this site called ask the doctor staffed by an international expert, dr Okun, who will answer questions for free. You can post whatever you want answers about. I think Parkinsonism is the broad name for all kinds of parksinsin disease varieties that encompasses all sorts of neurological symptoms. Does your doctor think your drug induced Parkinsonism will subside now that you are off the meds?
  6. Superdecooper

    Welcome to the club

    Welcome MIP, start exercising now.. the best advice I got from a caregiver was...live your life to the fullest. If you’ve been meaning to do something, then go do it. And do it with as much gusto as you can muster. welcome to the club
  7. Superdecooper

    Welcome to the club

    Hi Gang, I just joined the local US Masters Swimming team. I'm training for a swim meet this spring, 50 yard freestyle. I don't plan on going out like a plant, dry and withered. When it's my time to leave planet Earth, I plan on burning up like a shooting star! -S
  8. Superdecooper

    Transition to higher dose of CL

    Hi Dr. C, At my last MDS visit, my Rx was changed in hopes of lengthening the time between doses and addressing some new symptoms: Rx - Carbidopa-levodopa 48.75-195 mg per ER capsule (RYTARY) Replaces carbidopa-levodopa 36.25-145 mg per ER capsule (RYTARY). The doc said to finish out my current meds - i have about 4 weeks left - and then start the higher dosage. He didn't want me to waste the lower strength Rytary. My question is - I don't want to just jump from one to the other. I'm looking to make a smoother transition if possible. Go slowly if possible. I'd like to take the 36/145 for three times a day and then take the 48/195 one time a day for about a week. Then gradually substitute the higher dosage for pills 3 and 4 for about a week, then switch over totally to the higher dose for all four pills in about 2 weeks. Is that okay, or would you recommend something else? Maybe doubling up on the 36/145 for the 4th dose? Thanks for all your help and for all you do for this forum, Superdecooper
  9. Superdecooper

    Good morning!!

    Good morning I’m thankful for my health and strength, such as it is. And for my will to keep on keeping on. -S
  10. Superdecooper

    Transition to higher dose of CL

    Thanks Mark, i will get back to you after I try the switch. I’m also trying to work in some morning swimming, but the PD symptoms were worse after I got out of the pool in the morning. But if I understand what you posted, my lack of a calm sleep might cause my dopamine levels to drop overnight leading to more off periods. Interesting, my MDS suspects I also have Rem Sleep Behavior Disorder. I haven’t been tested beyond just sleep apnea and starting to use a cpap machine, but I might get the test taken now. I still have active vivid dreams at least 3 times a week, but since I’ve been on Rytary they are no longer violent and terrifying, like a 3D horror flick. And I no longer feel the need to use my karate skills while I sleep to battle my attackers. But my dreams are vivid and I do remember them well into the morning and can recall some aspects day later. In the past I’ve had that terrible problem of just starting to wake up and being unable to move my body, but the last time that happened was July of 2017.
  11. Superdecooper

    Welcome to the club

    Hey Gang, So, ummm, how long does it take to get to acceptance of PD? This seems to be taking me forever to just move on. I keep telling myself just Get over it Superde... I just want this to fade into the background of my very busy life - which is full of working, being a husband and father, swimming, watching movies, music, etc. Do you ever just forget and live as if nothing is wrong, or is that unrealistic?
  12. Superdecooper

    Transition to higher dose of CL

    hey Mark, Uggh... life with Parkinsons.. another rough morning for me today. Here's what I'm doing on most mornings. I take Azilect, baclofen and blood pressure meds when I first wake up around 6/6:15 am. I wash up and then stumble down stairs, holding on to the walls because my foot is cramped and my hand is painful and I'm have a problem judging distances on the stairs and the ceiling height. I generally feel like I'm made out of concrete and rusty woodchips. i eat breakfast, usually a bowl of cereal, banana and coffee - which is complicated by me dropping stuff and my hand shaking when I'm trying to put coffee in the stupid machine. And then I go back up stairs around 6:40 and take Rytary and my regular vitamins. I try to do some stretching and exercises while waiting for things to settle down. Those symptoms start to diminish around 7:30 and I feel pretty much good to go by about 8:15. Next dose of Rytary is about 11 am, then 4 pm then 8 pm just before I go swimming. The days are mostly unremarkable and the mild symptoms I have are well controlled with no wearing off. Question: When I started my day by taking Rytary when I first woke up and then taking Azilect after breakfast, it just never seemed to catch up during the day. i tried that back in the summer when I was taking 36/145.. Should I try again to take Rytary, now at 48/195, first and then wait a bit and take Azilect, would that speed up symptom relief? I'm only talking about maybe a 30 minute space between the two meds... Do you think i should ask the doc to get some immediate release CR? Maybe it's not worth it just yet? Also it seems pretty obvious to me that my dopamine levels are not being replenished as I sleep. Is that a valid conclusion? As always, thanks for all your help. I donate to the Parkinson's Foundation because you and Dr. Okun are great resources, and the forum is helpful to me. -S
  13. Superdecooper

    Good morning!!

    Hey Linda, get well soon. -S
  14. Superdecooper

    Sports and Dopamine

    Hi gang, I'm finding that my 4 pm dose of C/L wears off in the middle of swimming hour, which i usually do between 8 pm to 9:30 pm. So I get a return of symptoms, especially stiffness and some light freezing, as I'm in the locker room getting dressed. Sometimes it even happens while I'm swimming and I can feel my foot and shoulder getting too stiff to swim. I usually take my last dose of the day at 9 pm, but if I go to the gym late, then I'm also late taking the last dose. My question is: do sports activities burn out the dopamine faster than just sitting around? Also, what do you guys think if I just take the 9 pm dose just as I get to the gym at 8? I've done that before and it made swimming oh so easy... -S
  15. Superdecooper

    Sports and Dopamine

    that's interesting noah. i guess everyone is different.
  16. Superdecooper

    Sinemet

    My MDS is pretty flexible in the area of dosage timing. He said I’m the boss, not the “damn” medicine. He just wants me to live as symptom free as possible and is not a stickler for timetables..
  17. Superdecooper

    Sports and Dopamine

    So, I decided to switch my swimming routine to early morning instead of late evenings. I took my regular dose of Rytary around 6 am and went swimming from 730-815 in the morning. By about 845 am, the Rytary had worn off and I was having tremors and pain again. The difference, I think, is that if I swim at night, I already have a full day of dopamine circulating in my system. In the morning, I had only taken one pill and that wasn’t enough to compensate for 45 mins of robust swimming. I don’t know, I’m guessing here. Im reluctant to repeat the morning swimming, but I’m going to do it again to see if i was just having a bad day. im pretty athletic..I swim a mile six days a week and walk about 3 miles a day during the work week. what do you all think? Feedback would be much appreciated.
  18. Superdecooper

    elect leaders who have integrity

    It’s not politically correct to roll your eyes when you hear facts.... lol!
  19. Superdecooper

    elect leaders who have integrity

    Hi DaveN, I don't have time to do the fact checking for you... but i'll just pick one statement. -- Greatly improved safety on the Korean Peninsula According to the current travel advisory from the U.S. State Department - Do not travel to North Korea due to the serious risk of arrest and long-term detention of U.S. nationals. https://travel.state.gov/content/travel/en/international-travel/International-Travel-Country-Information-Pages/KoreaDemocraticPeoplesRepublicof.html But if you believe Trump and think the Korean Peninsula has greatly improved security, go ahead and visit.
  20. Superdecooper

    elect leaders who have integrity

    PatriotM, Guess what? The facts don’t support most of that list of Trump talking points, despite what Fox News says. It also ignores all of Trump’s lying, racism, and bigotry. You seems like a decent person, so maybe Trump is right when he said, there are good people on both sides... -S
  21. Superdecooper

    cold sweats

    I really dislike the feeling of a cold sweat. I’ve found that sleeping in a cotton t-shirt absorbs much of the sweating - not all. But if I wake up and my shirt is soaking wet, at least my wife doesn’t get drenched. And the sheets and covers stay pretty dry. Second, before I started taking C/L and sweated more frequently and heavily, I used to also sleep on top of a regular bath towel. Using both the T-shirt and the towel kept me pretty dry. Not a solution but a work around. I’m finding that most of my life with PD is finding workarounds. -S
  22. Superdecooper

    Sinemet

    Thanks Mark, i have been wondering about this and discussing it with other posters in a different thread. So far I’m noticing that taking a dose of Rytary before exercise is better for me... now if I could figure out what to do on those days when I sleep more than my normal 5 or 6 hours, and my dosing schedule is thrown off...
  23. The following is from a series of tweets about how to talk on the phone with a PWP who speaks very quietly. I'm just sharing this because the suggestions seem genuine, but maybe ineffective? It does show the options that people without PD are willing to try... ----- Yo disability twitter! I’m interviewing a gentleman by phone with decreased vocal abilities due to Parkinson’s and I’m looking for accessibility strategies/tools to bolster our communication and make this less strenuous for him. I’ll be using an iPhone, he has a landline 12:58 PM - 30 Oct 2018 New conversation Patch Donal‏ @PatchDonal Oct 30 More Replying to @LizDrogeYoung The way Deaf people did it back in the day was with TTY, but I think you need a special device for his end. Is voicing completely not an option for him, or is it just taxing/inefficient? Liz Follows‏ @LizDrogeYoung 23h23 hours ago More He can still speak, what I’ve been told is that volume and perhaps some word formation is an issue and requires lots of repeating so that folks on the other end to hear what he’s saying. I’m down for patience on my end, for sure! Kelsie Acton‏ @KelsieActon 20h20 hours ago More Any chance of switching to skype or a video call format? Being able to see him might help you understand quicker Liz Follows‏ @LizDrogeYoung 17h17 hours ago More Unfortunately, no, but a good thought Kelsie Acton‏ @KelsieActon 14h14 hours ago More I guess the only other tip I have is ask for a repeat of what was said and if you still don’t understand ask him to rephrase it. If you don’t understand after two tries listening to the same syllables may not be helpful Liz Follows‏ @LizDrogeYoung 3h3 hours ago More I really like this strategy End of conversation New conversation Jesse Menn‏ @jessemenn Oct 30 More Replying to @LizDrogeYoung Are there other tech options available? Liz Follows‏ @LizDrogeYoung Oct 30 More Def not on the interviewees end. I might be able to finagle something, but I’m a freelancer so it comes from my personal budget, or borrowed from husband’s university (or some disability resource I’m not thinking of?) Jesse Menn‏ @jessemenn Oct 30 More Sorry, I can't think of anything off the cuff. I've always been able to email/text with other person when there were vocal + motor difficulties; never had to rely on traditional landline. (OT: This is the first time I've felt at all like a millennial) Liz Follows‏ @LizDrogeYoung Oct 30 More I do appreciate the retweet! Direct message Jesse Menn‏ @jessemenn Oct 30 More Sure, hope something comes of it. I'll be interested in the replies either way. End of conversation New conversation Amy‏ @PracadAmy Oct 30 More Replying to @LizDrogeYoung @UntoNuggan I’m wondering if there aren’t technical solutions if at least some of your interview questions are yes/no or could be standardized to make shorter responses possible. Just a thought. Liz Follows‏ @LizDrogeYoung 23h23 hours ago More I’m looking to hear his story of how he got involved with this neat thing at a university, so flavor and color is what I’m hoping for, but I will put thought into my Qs so they *can* be answered simply. This is a really good suggestion! End of conversation New conversation Lawrence Carter-Long‏ @LCarterLong 22h22 hours ago More Replying to @LizDrogeYoung Not sure what your budget or resources might be, but you may want to do a tape sync. That is, have someone in the room with the person you are interviewing recording the interview with a decent mic and equip at the same time you're speaking on the phone. Liz Follows‏ @LizDrogeYoung 17h17 hours ago More I don’t that will work for this interview, but this is an excellent tip for future ones. Thanks! End of conversation New conversation Mike Henry‏ @mhenry07 21h21 hours ago More Replying to @LizDrogeYoung I worked on a project for a gentleman with Parkinson's and I learned to be patient and paraphrase what I thought he was saying to make sure I understood correctly. Also, family members were sometimes available to help. Perhaps he has a family member avail. for conference call? Ahhhhh Andrews‏ @alyssashmalyssa 19h19 hours ago More echoing @mhenry07 here! Direct message Liz Follows‏ @LizDrogeYoung 17h17 hours ago More I’m fairly certain I’ll have a family member to help. Good call on the paraphrasing to confirm I’m understanding (also a good interview tip in general, but I def get lazy and assume I know what’s going on) End of conversation Sam Dooley‏ @TaxPSL Oct 30 More Replying to @LizDrogeYoung This maybe obvious but. A really good pair of headphones for you and put mute on at your end when you’re not speaking. 0 replies0 retweets0 likes Susan Fong‏ @pixprin 3h3 hours ago More Replying to @LizDrogeYoung Just ask him!
  24. Superdecooper

    How does the Mask begin?

    Hi Sherrie and Diane, Here’s a suggestion and one I’ve haven’t done yet. But I plan to. 1.make a cup of tea. 2. Use FaceTime on your iPhone/iPad, or Skype in your computer or one of the various visual communications programs, to call each other and talk. ( first you have to exchange phone numbers in a private message and also set up the time for the call) 3. laugh, cry, smile, talk in real life, not just on the forum. Hang up and repeat later in the month. I think we’ve all been told to watch out for internet stalkers, etc. but I’m suggesting that this forum is full of folks who could meet in real life because they live close enough, or meet by using a regular phone call or meet via a digital/visual call. I have talked to at least three or four forum members by phone. Just to say hi and trade stories. It makes me feel less alone and like I’m not fighting PD by myself -S I may post this as a topic by itself.
  25. Superdecooper

    Just joined the club

    Got it. Here’s looking forward to a long beautiful Life.
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