Diagnosed-Oh Crap now What?

Discussion in 'Health' started by Marty657, Jan 30, 2019.



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  1. Marty657

    Marty657 Member

    Location:
    Upland
    Name:
    Marty
    Current Bike:
    Santa Cruz TB2C
    Have not posted or ridden in months, last real ride was probably 6 months ago.


    Beginning the spring of 2018 rides were getting harder and recovery was taking days. I thought oh well I am getting older (65yrs) so suck it up and press on. Never had the best skills but was a good climber with good endurance, even in my early 60’s. Suddenly last spring I started having to walk climbing segments that I have ridden a hundred times and 5 miles turned into an endurance event and recovery took a week. I noticed that my left leg was lagging behind when pedaling, sort of like a dead spot. What the hell? In my gym work outs my strength was declining rapidly, weight dropped 20+lbs and people started asking if I was ok. Wife noticed that I was walking strangely and shuffling my feet. Bottom line, finally went to the doc , actually many docs and after months of testing the diagnosis is Parkinsonism, different (and worse) than Parkinson’s friggin great! Now What!!?

    As I work with the docs on a treatment plan I learned that exercise plays a very important part…..well some good news. So far my tentative plan is to try and keep some riding along with yoga and switch my lifting to lighter wts and higher reps, and keep hitting the bag.


    Questions for the IMTBR’s, is there any other unfortunate riders dealing with this? If so what are you doing? Any tips or info would be appreciated. Thanks all.
     
    ~JB~, Mikie, doublewide and 21 others like this.
  2. Runs with Scissors

    Runs with Scissors iMTB Hooligan

    Location:
    West Anaheim
    Name:
    Mark Whitaker
    Current Bike:
    2015 Giant XTC Advanced 1 29er
    Not really liking the post, more an acknowledgement. Sorry to hear, good that exercise can help. We're pulling for ya.
     
    DBMX119, Marty657, Mikie and 5 others like this.
  3. MrGreedom

    MrGreedom Well-Known Member

    Location:
    Los Angeles
    Name:
    Ryan
    Current Bike:
    BH Lynx6
    Thanks for sharing with us. I can't give much advice. But I promise to listen to you when you want to talk.
     
    Marty657, Mikie, -ROCKY- and 6 others like this.
  4. SnakeCharmer

    SnakeCharmer iMTB Hooligan

    Location:
    Crescenta Valley
    Name:
    Mike, aka "Ssnake"
    Current Bike:
    PV3 & FEX
    I've never heard of this condition so I cannot offer any help but I am sad to hear about it. You seem to have a grip on what you need to do and I hope it keeps you where you want to be. Prayers sent.
     
    Marty657, Mikie, -ROCKY- and 5 others like this.
  5. CBone

    CBone Well-Known Member

    Location:
    Antelope Valley
    Name:
    Tucker
    Current Bike:
    Intense Primer
    Good luck @Marty657 . Sucks but keep fighting:thumbsup:
     
    Marty657, Mikie, -ROCKY- and 4 others like this.
  6. herzalot

    herzalot iMTB Hooligan

    Location:
    Laguna Beach
    Name:
    Chris
    Current Bike:
    2020 SC Megaplower
    @Marty657 I am very sorry to hear this. I hope there are treatments or therapies that can slow or arrest the progression.

    Thoughts, prayers, karma, positive vibrations, kismet, mojo, stoke - whatever you need in the spiritual realm, we will throw at you. Anything we can help you with in the physical realm, just ask.

    And I am going to say this in all sincerity - e-bike if it helps!
     
    OTHRider, Marty657, Mikie and 10 others like this.
  7. mike

    mike iMTB Hooligan

    Location:
    Western US
    Name:
    Mike O
    Current Bike:
    Vendetta/Smash
    Hey, Marty, really sorry to hear it.

    A close bro was diagnosed with PD over 15 years ago. It's been a challenge, but he ultimately had cranial stim nodes implanted which have reduced his symptoms and need for such heavy meds. He's healthy and active, especially to many PD patients in late 50s. He rides mountain bikes, and in fact, bike riding is an emerging source of benefit to PDers he has found. Something about the ongoing balancing that brings lasting relief. So overall he is doing fantastic.

    My pal suffered some injury from simply falling down during episodes of lock-up. I've implored him to wear some thin knee pads, and long pants if desired, but wearing shorts year round is a thing where he lives. At this point it's a little after-the-fact. My buddy is probably the toughest MF I've ever known, but any knee or arm will eventually suffer against a hard floor. Just be practical and not proud about that stuff – protect yourself.

    Know that there can be quality of life ongoing with PD. Stay with it. Best wishes to you and yours moving forward!
     
    OTHRider, Mikie, Redman and 13 others like this.
  8. Faust29

    Faust29 iMTB Hooligan

    Location:
    irgendwo
    Name:
    B. Bunny
    Current Bike:
    2 SC and a STDM
    Life seems to have a way of throwing curve balls when you least expect it... I hope that you can move past the "oh Sh!t" stage and find a mental place and rhythm that keeps you moving.

    And as Herz says, think about an e-bike. You're allowed...
     
    Marty657, Mikie, Old&InTheWay and 8 others like this.
  9. Cyclotourist

    Cyclotourist iMTB Hooligan

    Location:
    Redlands
    Name:
    David
    Current Bike:
    Chameleon 60%
    Thanks for posting, Marty. I hope we can offer virtual support to you here.
     
    Faust29, Mikie, MrGreedom and 4 others like this.
  10. DangerDirtyD

    DangerDirtyD iMTB Addict

    Location:
    CA
    Name:
    Chicken Nugget
    Current Bike:
    2018 Guerrilla Gravity SMASH
    I ride with a guy with Parkinson’s. E-bikes are a solution to your MTB future. Good luck @Marty657!
     
    Faust29, Marty657, Mikie and 10 others like this.
  11. mountaingirl sara

    mountaingirl sara iMTB Hooligan

    Location:
    So Cal
    Name:
    Sara Ford
    Current Bike:
    Santa Cruz 5010
    @Marty657 Marty your attitude is amazing, some days you may not feel the stoke, but if you can keep that positivity for the most part....that’s everything! Being off the mtb is brutal, but like the rest of the hooligans are saying...do what you have to do to get back out as soon as you’re given the green light! Sending up a prayer that you WILL overcome and RIDE this out with joy and strength intact!
    We’re on your side and here for you when you need to vent or share:thumbsup::)
     
    Faust29, Marty657, Mikie and 8 others like this.
  12. -ROCKY-

    -ROCKY- Well-Known Member

    Location:
    Lakewood, CA
    Name:
    Rocky
    Stay strong @Marty657 !!!! Prayers and healing vibes to you!!! :)
     
  13. konakc

    konakc iMTB Rockstah

    Name:
    kc
    Marty... i know this is just online. But i want u to know that this real life stranger is praying for u...
    Take care brother.
    Kc
     
  14. Redman

    Redman Well-Known Member

    Location:
    Cypress, Ca
    Name:
    Kevin
    Current Bike:
    SC OG Hightower 29'r
    @Marty657 sorry to hear about your condition. My father has Parkinson's and it FUKING SUCKS!!!!!

    riding a bike as much as possible will help reduce your symptoms, as someone else has already mentioned that it helps with your balance. Also, consider (if not already using) mary jane. She can do wonders for gents like you. CBD will help as well, but THC has a better affect on Parkinson symptoms. Good luck to you and you are in my prayers.
     
  15. Marty657

    Marty657 Member

    Location:
    Upland
    Name:
    Marty
    Current Bike:
    Santa Cruz TB2C
    Thanks Mike, the real life input and experience gives me motivation to press on.
     
  16. Mikie

    Mikie Admin/iMTB Hooligan

    Location:
    Lebec, California
    Name:
    Mikie Watson
    Current Bike:
    Ibis DV9, Santa Cruz Hightower
    Oh Marty.
    I have ridden with you in the past and it was an absolute joy!
    I hit the like button only to acknowledge the post.
    I wish I had words of wisdom towards the ailment but I don't. What I do have for you is love and prayer Man!

    I always struggle with folks that stay as healthy as you have and yet we still fall into these gaps of health issues.
    Adding you to my prayer life and just know Amigo that we love you, are rooting for you, and there for you Brothah!
    Keep us posted, even if it's just to vent... It's all good!

    Mikie
     
  17. Marty657

    Marty657 Member

    Location:
    Upland
    Name:
    Marty
    Current Bike:
    Santa Cruz TB2C
    Thanks Herz ….. hate to agree but you might be right about the e-rig.
     
    Faust29, herzalot, MrGreedom and 4 others like this.
  18. Marty657

    Marty657 Member

    Location:
    Upland
    Name:
    Marty
    Current Bike:
    Santa Cruz TB2C
    Thanks Redman, I am pondering the use of CBD. I will discuss with my docs at next progress appointment.
     
  19. Mikie

    Mikie Admin/iMTB Hooligan

    Location:
    Lebec, California
    Name:
    Mikie Watson
    Current Bike:
    Ibis DV9, Santa Cruz Hightower
    Efff the Docs related to that :facepalm:. They are just going to give you pharmaceutical concoctions. Get with Doctah @rossage :thumbsup:
     
  20. Marty657

    Marty657 Member

    Location:
    Upland
    Name:
    Marty
    Current Bike:
    Santa Cruz TB2C
    Thanks for the words of encouragement Sara, I WILL.
     
    Faust29, Mikie, MrGreedom and 3 others like this.
  21. mike

    mike iMTB Hooligan

    Location:
    Western US
    Name:
    Mike O
    Current Bike:
    Vendetta/Smash
    Awesome, my friend – power to you! I been trying to catch up with my buddy. I'll mention your situation when I do. I'm sure he will have some worthy overarching advice.

    I was in phys therapy today and saw this interesting bit, had to think of you:

    IMG_1801.JPG


    Hmm, you better get busy with the exercise! Sounds like win/win. :geek:


    Potentially debilitating conditions like PD and MS don't have to be so. My pal with PD sought out a hospital university that is doing experimental non-pharma treatments, and became a model patient for their work because he is active and healthy. He's a tough, stubborn dood, and that helps. Another friend with MS has been aggressively treating it for 15 years, and he's one of the most productive people I know. More so after his diagnosis! He's as strong a rock climber as ever.

    So, Marty, be one of those guys, pushing for better and more specific treatments that work for you, and not settling for rote protocols. You are an athlete, and most people your age are not. Demand your quality of life and assert your recreational desires. Get alternate opinions. And keep that strong attitude working for ya! :thumbsup:
     
  22. Marty657

    Marty657 Member

    Location:
    Upland
    Name:
    Marty
    Current Bike:
    Santa Cruz TB2C
    Thanks Mikie for the love,encouragement and the prayers. And thank you for this site you created. I can always ride vicariously through post to keep me motivated.
     
  23. Marty657

    Marty657 Member

    Location:
    Upland
    Name:
    Marty
    Current Bike:
    Santa Cruz TB2C
    Awesome Mike, THANKS exactly what I needed.
     
  24. Marty657

    Marty657 Member

    Location:
    Upland
    Name:
    Marty
    Current Bike:
    Santa Cruz TB2C
    To all the posters, I am overwhelmed and sincerely appreciate all the kind words, wisdom, encouragement, love and prayers. Today is a better day! I did tear down my Tallboy yesterday to clean, rebuild and possibly sell. Well now the selling part is out of the question. I will be back on it very soon. Until then Ride Reports will keep the enthusiasm peaked. Thank you again to the imtb family. I am still getting over the shock so bare with me. Hope to see you on the trails soon as rides increase and doctors apps decrease. Love and thanks to all.
     
  25. Mikie

    Mikie Admin/iMTB Hooligan

    Location:
    Lebec, California
    Name:
    Mikie Watson
    Current Bike:
    Ibis DV9, Santa Cruz Hightower
    Let us know when and where you want to ride. I will be more than happy and honored to hit the trail with you regardless of effort and miles. I'm in it, to win it with you!
     
  26. Redman

    Redman Well-Known Member

    Location:
    Cypress, Ca
    Name:
    Kevin
    Current Bike:
    SC OG Hightower 29'r
    @Marty657 take what Mikie said to heart. Your Dr. (VERY LIKELY) isn't going to support anything about marijuana. They get no... say... support from them, so they're very likely to try and turn you away from that. If you would like I can message you some contacts that we have used for educating and purchasing the right CBD for you. There is A TON of different CBD's on the market. MOST OF WHICH ARE ABSOLUTE GARBAGE. Do your homework first, like most things it's quality not quantity. Let me know if you want that info.
     
  27. TwoWheel Eric

    TwoWheel Eric Member

    Location:
    Orange County
    Name:
    Eric
    Current Bike:
    Ibis Ripley V4
    Sorry to hear.

    If you're open to supplements I agree with Redman on CBD and I also recall reading that Caffeine can help Parkinson's...although not sure if the help is in regards to preventing or limiting symptoms and no idea if it also is helpful for Parkinsonism specifically. Certainly worth some googling and discussion with your doc.

    Good luck.
     
    mountaingirl sara likes this.
  28. BonsaiNut

    BonsaiNut iMTB Rockstah

    Location:
    Laguna Hills
    Name:
    Greg P
    Current Bike:
    Santa Cruz Hightower CC XX1
    It is difficult for me to comment on your situation... because I don't think anyone can possibly understand what you are going through.

    However it helps to remind me that we only have so many days... so many hours... so many minutes. Some have a few more, some have a few less. But they are all limited. I swear when I read your note the first time I went out and kissed my wife and told her I loved her.
    "What did I do?" she asked.

    Keep attacking life. Bench press a billion pounds. Ride a million miles. Do all the bucket list items you ever wanted to do. And tell us all about it!

    Happy the man, and happy he alone,
    He who can call today his own;
    He who, secure within, can say,
    Tomorrow, do thy worst, for I have lived today.
     
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