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metfan31

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metfan31 last won the day on January 28 2014

metfan31 had the most liked content!

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About metfan31

  • Rank
    Advanced Member
  • Birthday 12/13/1979

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  • Gender
    Male
  • Location
    North Suburbs of Chicago
  • Interests
    Reading, wood working, baseball, my wife & children, cooking, gardening...
  1. Theresa, any new on this? Your symptoms sounds a lot like mine early on, and I am just not off meds completely for the first time since being Dxd really and I find my various symptoms come and go. One day I stutter more (Gardener I find talking to certain people makes me stutter worse, people who I may be less comfortable with and might want to choose my words more wisely...) In the morning and night I am way more stiff, mid day seems to be tremor time, Rarely do I tremor bad when I first wake up, but my feet feel like they are in quick sand. I occasionally struggle with balance (hate anything moving within 2-3 feet of me, it messes up my focus and makes my balance get worse...) but anyway it seems IMO that my brain knows it has limited dopamine to work with and it decides (almost arbitrarily) if I get the dopamine to think clearly or do I get it to be able to walk straight. My right arm almost never swings when I walk anymore but every so often it still does. Does this sound like the PD any of you know?
  2. Go to bed early... not the spirit of this topic but on 1/16 the normal PD medicine today and tomorrow last day I get that to be off meds a full week for MDS appointment.
  3. Take nothing for granted.
  4. Golf has been a savior for me this summer. You can set your own pace & many healthy people out on the course make fools of themselves without illness.
  5. Ok not really self promotion but wanted negative people to leave this topic alone. I am coming off meds for my next doctor appointment and depression is attacking my self esteem. All I want is to see if anyone on here would be willing to do a laughs and love challenge with family to get PD some attention like ALS ice bucket thing. 5 min video explains my idea. Http://youtu.be/TfWoD3_7OM8
  6. wow Roger, I would guess it takes one to know one. I am not self promoting anything. Your bullying and my need to focus on my health and my life caused me to stop posting here months ago. The first time I come back and only to share something with those who cared, and you have to quote my failed attempt to rally PWP as a community to help raise awareness? For the record this post and video have NOTHING to do with Survivor or my feeble attempts to convince a national network to take a chance on someone with our illness. This video is the follow -up to the original post I made in this topic. So do yourself a favor, pick on someone who thinks your opinion is worth the $#!+ on your fancy lawyer shoes that haven't seen a court room in years. I get that you are a sad sick man who misses the courtroom drama and arguments, but I suggest you take your meds and go to bed.
  7. Hi All, I've been thinking of you and reading on occasion from a far. I'm progressing in my illness and trying to do the day to day thing and not let PD take over my life. Quite a while back I shared my son's story in this post. It received much more of a response than was intended. For the past few months I have been spending my free time at the computer working on a fitting tribute to my son. If any care to watch you may find it here: http://youtu.be/8CP64bjVZfI I'll try to post again after my next set of Dr. appointments (which I hope yield more answers). God Bless Richard
  8. ok Roger if this doesn't get a laugh instead of a <sigh> I'm chaulking you up in the forever lost cause column... as you can see I don't give up easy 39 days I spent filming my beard everyday with a tri-pod in the closet that my wife & I had to trip over to get out cloths, but I think the finished product is worth it GO BIG or go home not letting the apathy PD gives me, or indifference of good people keep me down
  9. reminder tomorrow night is the big day to make our push to get noticed. Between meds and PD I have been up & down and all over the place emotionally please don't take any bitter sounding posts of my lead you to believe I'm ever going to give up. This is my dream and I am going to not let PD or anything make me stop trying to make it happen.
  10. I too am very moody for no apparent reason at times. My Neurologist blames the Requip, but I am often worst when I am over due my next dose and not medicated, also I had this before Dx or medication. My MDS does not think it is the medication either but while not ruling out PD, she could not confirm it because I was medicated and symptoms were most likely masked and too subtle to warrant Dx. She did say that moodiness can be part of PD or just the frustration that comes from constant pain and memory issues (& all the things Dianne states above). I was in pain for so long that my mind started to tune it out so I felt it but wasn't really aware of it (if that makes sense) only now that I have had relief from pain do I know how much pain I have been in. Basically I forgot what normal felt like, pain was the new normal, also I attributed severe pain to a bad back or over doing it with physical activity. Anyway my point is you may be in more pain than you realize and that alone is enough to make anyone cranky. I really hope we are both as fortunate as Dianne and can eventually move past the irritability caused from all the frustrations tied to PD. Hope this helps, at least know you are not alone. Richard
  11. One week from today the new season of Survivor premieres This means their social media will be getting tons of hits Join me & comment their website (http://www.cbs.com/shows/survivor/), their facebook (& tweet with ‪#‎survivor‬ or to @Survivor_tweet with messages about why you want to see someone like me on their show Ask your family friends and neighbors to help All we need is people to send 1 message anytime between 6 & 10pm EST next Wednesday (2/26/14) If enough different people take part in this social media blitz it will get me noticed and I will be able to convince them to cast me... messages should include my name (Richard Johnson or Capt Irish either or both) and be brief about why they should give me a shot, and may absolutely include the fact that I have YOPD and will proudly show America what we deal with early on and yet can overcome... blah blah blah whatever you feel works, the more unique each message the better, the goal is not to spam them (I could do that on my own) the goal it to prove we have a voice and are willing to use it. More over let them know you are more likely to watch with someone like me on the show.... I hope you get the idea. For all the haters on Roger's side of the aisle I apologize for publicly pursuing my dream and requesting your help, the good news is that this will be the final push until when I can submit another audition next year, and if they do call me out to LA as a semi finalist I won't be able to do even, so my success here may be in your best interest too but seriously this is last call as far as I'm concerned... Thanks to all those who have sent me well wishes and support, I hope to live up to it. Richard
  12. and Roger as ever has hit the nail on the head... sorry to be so annoying Rog
  13. Not that I'm aware of, I just don't think Kendall knows how to use this forum (get updates or follow up on posts) yet. No offense Kendall. Kendall is a great guy who has been fighting the good fight with us a lot longer than I, from the time since I have know him, he has showed much passion in many areas and takes on a lot at once. He will follow through though, just doesn't happen over night. Also I'm sure you all understand that the little free time the man has is sometime captured by PD rearing its ugly head. I'll contact him and try to explain the basics of the forum, I would post his video but want his permission. Richard
  14. Sorry all I have been out of sorts, my med dose seems to be right finally but then life starts being uber stressful. I see the lack of interest or replys/ comments/ likes to my posts (in this thread esp) and I read into it. I don't want to bore people going on and on about my thing, I think that is selfish and I try to be a good (unselfish) person Rebecca your support and kindness has had no limit as has a few other on here (I hope they know who they are), and I am extremely grateful to all of you. IMO it would take a swell of support, the likes of which CBS or Survivor casting has never seen to make them notice one person or some comments from his friends. I'll never say no to someone wanting to 'take up the cause' but I am assuming the support is not here, and this is not the only group of friends of which I have felt my support dwindle. If we really do want to do this like this post and I'll know there is someone behind me. Rebecca you are absolutely right, the comments for support should mention me by name either Richard Johnson, or Captain Irish or both. The #CASTJAMESDAD is something I tried to start on Twitter to collect supporting comments in one place where I can easily show CBS. As of today (almost a month since starting this push) My wife is the only one to Tweet #CASTJAMESDAD other than myself. I get many on here may not use Twitter, so I don't take it personal. Anyway know I am not giving up but I just don't want to abuse/misuse this forum or anyone in it. The forum means too much to me. Some dreams never come true, it is only when we wake up that we learn the journey was the reward. Richard
  15. on of my fellow PFP (yes F not W, we are fighting it, not with it anymore) recently enlightened me to the fact that care giving takes many different forms and is not as simple as some one who physically helps us do things we cannot do on our own... I was letting him know that I really don't have a 'caregiver' yet as I can still do most everything I was able to do before while on meds, only some things aren't as easy or take longer... than he showed me a video of his Daughter who is between 1&2 yrs old, taking groceries out of the bag, and greeting him at the door, and basically keeping him motivated... now I have to say I have a handful of caregivers, this forum as a whole is one, and my 2+yr old Sammy who spends all day with me while my Wife (his mom) is at work and our other sons are at school, him just needing me makes him a caregiver... I would say the research you have done, and compassion you have shown for your dad make you one heck of a caregiver, even if you are on the other side of the country. I am sure your parents have no doubts that you love them with all your heart, and that alone is the best thing a parent can ever ask for. Also knowledge is power; and sounds like your parents aren't exactly internet people, everything you share with them or your siblings from here along empowers them to take PD head on. You are a Hero Too! Richard