helplinedonate
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    

Ollie

Members
  • Content count

    17
  • Joined

  • Last visited

  • Days Won

    1

Ollie last won the day on February 14

Ollie had the most liked content!

Community Reputation

15 Good

1 Follower

About Ollie

  • Rank
    Member
  • Birthday 09/30/1985

Profile Information

  • Gender
    Male
  • Location
    West Chester, PA

Recent Profile Visitors

97 profile views
  1. The point of the exercise isn't to address the current symptoms (and in fact for most of us the exercise is be difficult and can exacerbate current symptoms). The stiffness I felt after a work 3 years ago is no where near how stiff and achy hurt I feel after I work out today. My tremor goes crazy while I work out, and the fatigue hits like a brick shortly after too. BUT, the physical act of exercising actually has the therapeutic benefit of resisting neurodegenerative diseases. When you work out hard, to the point of actually tiring yourself out, there can actually be measurable increases in dopamine in the stiatum. Regularly working out, even moderately, has been prove as one of the more effective ways to enhance the plasticity of the central nervous system. That means it it makes your brain better able to adapt and resist the effects of PD. This isn't sales pitch type stuff from an infomercial on late night TV, its scientifically documented fact. So, yes it sucks. It can hurt, and I'd agree that it can even cause symptoms to flare up. But, if that means my current symptoms flare and I slow down the progression of new ones, I'm all for it.
  2. It would be nice if people would not blatantly ask "You nervous?" when they notice my tremor in public.....I generally just make a joke about their level of attractiveness making me jittery... As for the people I care about and who care enough to ask me how I'm doing, its the same as if I didn't have PD. They ask me whats going on, and if PD is what's going on for me then I talk about it, and if not I don't. If I ask them, they tell me about work or their spouse or whatever is going on with them. I enjoy not being singled out as different and asked only about one part of my life.
  3. Sean, I was very recently right where you are now. Dx'd last March at 30. Father of a 3 year old, getting my career moving, planning for future, all that stuff. Two suggestions simply based on my experience. Enjoy the lack of your response. Just be a normal guy and enjoy whatever is going on around you. There will be times (lately for me) where the full reality of this disease smacks in you in face and you cannot shake the inescapable thoughts of your future and what it may or may not include. This comes and goes, and thankfully it stays gone more often than not. It's my belief that the human mind isn't capable of feelings of grief this immense, so it disperses the grieving process into short busrts of sadness and then shuts back down to allow us to continue to function. My suggestion is to allow that process to occur however it may. Let yourself be sad on the days where it hits home (when you bawl watching a commercial for an allergy medicine, simply because the father danced with his daughter at her wedding) and don't fight the feelings aware. You need to feel sad sometimes. The days that its gone, take notice of the amazing parts of your life and the happiness that's in it. I have been so much more aware and able to immerse myself in the good things I have, and its a powerful thing to take note of. Now that was all hippie, psychological feel good stuff. My second suggestion is the opposite. Work...the...f@ck....out. Change your schedule, go to a gym, buy weights, get a second hand treadmill and binge watch madmen in your basement while you run. Anything. Make your body work. Even if you already work out not...work.....the...f@ck...out...more...The ONLY thing that has been clinically established to slow down the progression of this disease is exercise. No offense to a lot of the older people on here, but Y.O.P.D. patients (like you and me) have a great opportunity to use our body to fight this disease. I'm not saying it'll fix anything, I'm not even saying it won't actually kind of suck, BUT its like putting money into 401k. You don't want to put it away when you could use it to buy something shiny, but you have it now, and it'll be worth even more if you build upon it, so don't wait. Also, if there's any local support groups around you. Try 'em out. There a very real benefit to talking about this stuff, these feelings, these fears and these pains to empathetic and not sympathetic ears. Sorry you had to find this forum, but welcome.
  4. My right arm barely swings, and when I walk (or do anything active) my tremor gets more pronounced. I generally end up keeping my hand in a pocket whenever I walk, or I hold my phone in that hand and the weight helps.
  5. Took the at home version of the sleep study last night. By far one of the worse nights of sleep I've ever had, especially thanks to the big box strapped to my chest, the things in my nose, the electrodes all over my chest. Fun. I'm fairly certain my doctor just wants me to take it to confirm I don't have sleep apnea and he can give me sleep meds. We shall see. I wanted to get some imput from the recently diagnosed, long long diagnosed, YOPWP about meds. So far, we tried Azelect. My main reason was I was hoping it would help with fatigue and stiffness. I noticed nothing during the 4 months. Then with an insurance renewal it went up to $650 a month. I just started selegeline two weeks or so ago. Two 5mg pills (upon waking and at 11:30). I've also noticed nothing from this. My main complaints right now would be fatigue, muscle rigidity and painful cramps in my leg and foot. The tremor is still mostly all in my right hand, and I can still do most things the same. I've had a few random leg tremors, some internal tremors (which are freaky as hell, right?), but I can deal with that over the other stuff. Any body with some experience, input, direction, bossy-self-important orders or maybe some genuine heartfelt guidance?
  6. I take it 11/14. I'm pretty interested myself.
  7. For me, I am going to hide any and all symptoms as long as is possible. While I would love to think that my employers are understanding, compassionate people; I would also expect that they wouldn't hinge a hugely pivotal position and success of an office location on a person who may not be able to keep working for them for the duration. It feels sneaky to hide it, but it's also in my best interest to do so.
  8. Murray, thanks for the reply. I've been mulling over that exact concept, weighing benefits as best I can. So far, majority of symptoms are all right side. Tremor right hand, cramps/dystonia right leg and foot, no right arm swing, decreased grip, some issues with fine motor skills, but the fatigue has been the worst of them all. Combined with crappy, choppy sleep, I'm only surviving with regular caffeine uptakes. (Sleep study next week). Starting to have some slight random movement of my thumb in my right hand, and a few random moments where I'm so tired that I can't gather my thoughts, but that's it. As of yet, I've only tried Azilect. I was on it for 3 months, with no real improvement and a monthly cost of $650. Just spoke with my MDS and we're switching to selegiline to try that out. So, my thoughts are do I push for more pharmacological intervention and improve and delay anything I can, while increasing my happiness and ability to participate with my family. Or, do I hold out and struggle through this now until things get bad enough to require meds and hopefully prolong my independence. My MDS is still of the mindset that delaying any form of levadopa is in my best interest, to decrease my overall length of time on it and possible delay side effects. Catch 22, I guess. My daughter is 3, and she knows something is wrong because of my "shaky hand". She'll hold it and say she's trying to stop it and its cute and also a little heart-breaking. I'm not trying to figure out how to explain the complexity of a life altering, progressive, incurable, neurological disease to a 3 year old, but more continually worrying about her growing up seeing this and having to explain it to her later on. That, coupled with the fact that I feel terrible for her that she will have to bear this weight and not know/have a healthy father. So, it's more selfish worry than actual worry. I lucked out with my wife. She has been incredible to have by my side. She just ran the Marine Corps marathon for Team Hope for the NPF, and she has been attending education classes with me for PD, as well as pushing me when I need pushing and giving me time and space when I need them. I would venture she's probably read as much or more than me about Parkinson's. For work, I have to hide it to the best of my ability. I'm in a track where I've continually advanced and taken on larger more important roles for a commercial construction firm and the mindset of the owners would immediately remove me from that. When I'm ready to be removed or my work is being impacted, I can accept that, but until then... I understand I'm not far advanced, my symptoms are not overly impactful yet, and I have bounds of support. I'm lucky to that extent. I'm just looking for people who are in, or have lived through, relate-able experiences. I figured combined experience is way better than my one perspective.
  9. I've been in the same boat, 31, diagnosed 9 months ago, and having trouble relating to a lot of older people whose concerns don't aligh with mine. How long to delay medical intervention to mitigate long term side effects, when and how to tell a small (3yr) child, how to hide it at work, or when to tell at work, how to change retirement savings plans, how to help my spouse cope...lots of issues that are specialized to a younger demographic. Any one find anything yet?
  10. And they'll still have it, even on election day?
  11. Is this group meeting this coming Tuesday, the 1st?
  12. Well, to keep you guys updated since you gave me some help. Good news is I know whats happening, bad news is my neurologist gave me a probably diagnosis of YOPD. He gave me a referral to some very well known MDS "Dr Matt Stern" in Philly. He's requested and MRI, the cooper urine test, and a few random other blood work labs, but when I pressed him he said they were pretty much just for due diligence. So...I'm not enjoying this ride yet. Actually, having a really rough time with it, despite me assuming this is what it was.
  13. Just left my first neurologist appointment ever, with a probable diagnosis of YOPD (at 30). Well...that really sucks. He's giving me a referral to some "really great MDS" Dr Stern in Philadelphia. So...What do i do now? I gotta admit, I didn't anticipate having as hard a time hearing the words, I already assumed it was PD. Now I have to tell everyone? that sounds miserable.