Viewing 16 reply threads
  • Author
    Posts
    • #11568
      Jean Mellano
      Keymaster

      I do not feel feel pain luckily, but every time my left knee acts up (left side is my most PD affected side, I wonder if it is related to PD.

       

      Do you experience pain attributed to PD?  If so, how do you cope with it?

    • #11788
      Crystal Belle
      Participant

      Jean, my right side has been hit by my PD unfortunately. I wish it had joined my arthritis in my left hip and leg so I’d still have a good side. Yes, I do experience pain, different from the arthritis pain bc there is more stiffness and numbness involved, numbing my right foot as I walk at this point, moving up my leg, becoming stiff. I know now to find a seat (or restroom) quickly, before the numbness goes higher. This is where I am now, but no medication yet. Hopefully soon. The pain in my right hip, which didn’t hurt, is more severe than in my left hip at this time. It’s as though my good side went to the dark side.

    • #11793
      Jean Mellano
      Keymaster

      Crystal, it is unfortunate you have arthritis on your left side and PD affects your right side.  Ugh… Luckily, it is my left side that is slower/weaker because of my PD.  I am right handed, right side, thus far not impacted too much by PD.  I can relate to the restroom issue though, I never pass up the opportunity to use a bathroom.  I do hope you find some relief soon.  Is massage an option for you?

    • #11800
      Crystal Belle
      Participant

      Jean I haven’t had a massage in several years. The kids bought one for Mother’s Day one year and I loved it! Unfortunately I’m on SSD and Medicare living alone. I’ve enjoyed my serenity for decades and am paying dearly now lol. It was great when I was working and financing myself 100% of just enough. But arthritis took me out in 2004, wages went up with the cost of living and my income hasn’t much. I earned my raises under the 3.35 minimum wage, so did well then. SSD was 60% of my best 3 years. This past January I got a $20 per month raise, the first in 3 years and the largest in several. I’m probably preaching to the choir haha. But no, I don’t get massages. I asked my PT today if they had me set up for an occupational therapist bc I almost fell in the shower. He said I’m listed for one but it’s not scheduled yet, he’d check into it. Tremors hit me in there, and you understand the weakness. Fortunately I have a handrail. I know I’m talking very personal, but I’ve never felt so desperate. Yes, this is my new life. Vision staying blurred, reminding myself to blink, etc. Hopefully she will start some meds when I see her on the 30th.

      • #11803
        Jean Mellano
        Keymaster

        Its a shame that insurance does not reimburse for massage. I believe it provides great mental and physical healing and is under rated as a treatment for what ails us.  What a wonderful gift your children gave you on Mother’s Day ! I too have moments and days of despair, but, I must persevere and I plod along, trying to be in the moment. I have learned no one gets away scott free in this life.  We all have our crosses to bear at some point in our lives.  :-(.  I have a wise friend who says if we all put our problems in a basket, we would all pull our own problems back out .  In other words, it is the devil we know that we choose and not the devil we dont know.

         

    • #11807
      Crystal Belle
      Participant

      Absotively right! My pity party is over and I apologize for bringing it aboard lol. I am blessed beyond measure with a peaceful life. I worked hard for it and made a conscious choice to live alone without drama and have enjoyed it. Life in this world can not be completely without pain and problems or this would be heaven. Yes, we choose our devils, then say let’s dance. Or we whine as I have been. The dance began today. Thank you for your patience with my panic attack. I am back, and my head is back in the ring ready to float like a butterfly and sting like a bee. 🙂

    • #11816
      Jean Mellano
      Keymaster

      No apologies necessary.   When I was in the depths of despair during my cancer treatment, my soul mate Steve asked me if he should bring out the hats.  I asked him what hats?  He replied the pity party hats.  I laughed so hard and in that moment, I knew I would survive cancer.  From that point on, if Steve or I ever were despairing, the other would bring out the party hats.   We all fall into pity parties.  We wouldnt be human if we did not.    And you were not whining… for all you are dealing with , you have a remarkable attitude.  You go girl!

       

      • This reply was modified 1 year, 3 months ago by Jean Mellano.
    • #11824
      Crystal Belle
      Participant

      Beautiful idea! Haha! Pain sucks, but is a part of life that can’t be avoided. To be young and carefree is only for those who are young and carefree. We can cry about our pain or play with it, giving it the thumping it deserves I think. I like your style. Thank you for sharing it.

      • #11825
        Jean Mellano
        Keymaster

        🙂

      • #12134
        Ally
        Keymaster

        Hi Crystal, my name is Ally and I’m the new co-moderator for this forum. I was just going through some old posts to catch up on the conversation and I came across this thread between you and Jean. How are you doing these days? Would love to check in and get to know you more. If you have any comments or suggestions for the forum, please let me or Jean know. We want this community to be a resource to you and the other members. 🙂

    • #12141
      Crystal Belle
      Participant

      Hello Ally; It’s nice to meet you. I appreciate you and Jean very much. There has been much flooding in NC but we’ve been fortunate in this neighborhood. Water did get under my house and flood out the thermostat on my water heater again due to bad drainage in this city. Having arthritis also, the rain has put me behind on much, affecting my mobility. There is a little sunshine today so I’m hopeful. Living in the central part of the state, my house escaped the worst of Florence. It has still slowed me down physically unfortunately ie: one step forward and three steps back. Now, it is time for me to brave the shower bc the warm water helps, once I get through the process.
      It’s nice and quiet out there today; no thunder, rain, etc. peaceful Sunday.
      Thank you for communicating.
      Sincerely;
      Crystal

      • #12142
        Jean Mellano
        Keymaster

        Hi Crystal, so sorry you have to deal with the worry of those floods, as if you dont have enough on your plate.  And you are so right.. one step forward and three steps back.

      • #12147
        Ally
        Keymaster

        Wow, Crystal. Thanks for sharing. That’s a lot to deal with and I’ll keep you in my prayers. I’m glad Sunday was a little more peaceful, as you said, and I’m looking forward to chatting more with you in the forums. 🙂

    • #12150
      Crystal Belle
      Participant

      Hello Ladies;
      The sunshine is beaming down nicely here today. Someone told me recently that I’m not accepting my limitations and she is correct lol. Living alone, that would mean to curl up and starve so I’m definitely not. 😉 Today I have carried out the trash and taken the can to the curb after treating my family to a spaghetti dinner last evening. This was my son’s first weekend off since the flooding began, so today he’s back to working 7am to 9pm daily for the DOT. They took the weekend off bc they finished our county, although they’ve also been out of town often working 7 days a week. Thank you ladies for being here for me during a stressful month.
      Sincerely;
      Crystal

      • #12151
        Ally
        Keymaster

        That’s awesome to hear, Crystal! Your update made me smile. Thanks for sharing the positivity. 🙂

    • #12152
      Crystal Belle
      Participant

      Ally, to get back on topic, I’ve experienced a new level of pain with my PD, although arthritis took me out of work in 2004. Yes, I do experience pain from my PD, as it is completely different. Being coupled with the other, survival has become more complicated while remaining doable. I admit that now there are some days I don’t greet the world with a smile so these are the days I hibernate, awaiting it to ease back into doable. Today I’m all smiles. Thank you for the support. I think we with PD do need each other’s prayers, especially on those days. That’s what make this place so important.
      God bless you and Jean for providing it.

      • #12153
        Jean Mellano
        Keymaster

        My heart aches for you Crystal.  PD challenges us all so differently and we never know what new symptom we may wake up with.  I am happy you have a smile today and that you have family to support you.

    • #12155
      Crystal Belle
      Participant

      Thank you Jean, but all is well. Except I tried to edit my previous post to Ally and made a double post LoL!😂😁 Would you or she please delete the first one? You see? Give me one good day, and the shenanigans begin! Haha!
      You and Ally are both treasures whom I hope are doing well today. You truly are appreciated.

      • #12157
        Jean Mellano
        Keymaster

        You are too funny 🙂  duplicate post deleted.

      • #12166
        Ally
        Keymaster

        Aw, thanks for your kind words, Crystal! You mentioned you had to leave work because of arthritis – what kind of work did you do? Do you miss it? Hope you’re having a lovely Tuesday so far. It’s rainy as all get out here in Ontario… perfect tea + book weather though if you ask me!

    • #12181
      Crystal Belle
      Participant

      Ally, I do still miss working. I worked in auto parts, of all things lol! Started as a cashier in 1990, soon learned raises and promotions would come from behind the parts counter, so asked to be moved. My boss said, “your job is to just smile, look pretty and take the customers money”. Challenge accepted. I bet him that I could sell more parts within a week than he could or I’d serve him coffee every morning for a week. He laughed and said if you can do that, which you can’t, I’ll bring you breakfast for a week. We shook hands on it, I won. It was rough at first in the south, although my dad worked on cars in WV and I grew up a tomboy. But when a guy boldly said: nothing personal, but I prefer a man get my parts for me. Then I replied in the crowded store with a smile: no problem! This is the 20th century so your sexual preference is your business. Could I help someone else? Men started laughing and saying ME! ME! That broke the ice. That was at Advance Auto Parts, but I spent most of my automotive career with Autozone as a Commercial Specialist after being a Manager there. It was a M-F. In the year of 2000 I was in a car wreck. An off duty local cop ran a red light wiping me out. Unfortunately I was wearing a seatbelt, so it didn’t do my spine any favors. 😉 I managed to go back to work until 2004.

      • #12182
        Ally
        Keymaster

        Crystal, that’s an awesome story! I love it! No wonder you don’t back down from the challenges of living with PD. I wish I could’ve been there to see the look on that man’s face when you won the bet. 😛

        • This reply was modified 1 year, 2 months ago by Ally.
    • #12220
      Crystal Belle
      Participant

      Ally, I’m glad you enjoyed that. I’ve had an interesting life, and it’s not over until God says it’s over. Of course, had I known I’d be needing this body this long I would have treated it better. Nobody knows what tomorrow holds so we live it one day at a time. Hopefully, I’ll be on the meds to help these PD symptoms soon, and they could carry us until a cure is found! I’m ready to start, but must finish with the cardiologist first, to make sure my heart valve, which I was born with defective, isn’t involved. In other words, let him get his slice of the pie until November. Hopefully then my GP will be ready to treat my PD. I’m tired, but not giving up.
      There has been beautiful sunshine here today at 90 degrees Fahrenheit. Great weather for October. 😉

    • #13419
      Ruthie Baker
      Participant

      YES I DO!!!

      Actually I’m in a tremendous amount of pain right now.  I know I’ve had this degree of pain as my feet and hands continue deforming.  I got thru the pain many times. I just need to ride the wave.  I desperately need a CNA here to help me.  Kenny is no help.  I can moan in pain and he won’t help me.  I’m terminally ill, and I’m supposed to have 24/7 care.  But no one comes.  I can’t do this alone.  I can’t even make an appointment with my dr to evaluate my symptoms with medication. It’s clear to me that meds I’m on I’ve reached the level meds for PD isn’t enough anymore.

      • #13420
        Jean Mellano
        Keymaster

        Hi Ruthie

        I hope your pain has subsided a bit since your post.  Your advocate cant get a CNA to help you?

    • #13421
      Ruthie Baker
      Participant

      yes the pain did eventually subside, I’m under extreme pain from many of my critical DX.  God is holding me though.  My advocate has done all she can do.  Reported home health agency, reported my being neglected put in harms way and has had incidents that resulted in my getting hurt and starting a fire.  She is helping me with other home health care agencies but the problem comes down to location.  I’m in the Montgomery county, but we can walk to Bucks County.  So it’s quite a drive for agencies.  Still working on it though.

      • #13422
        Jean Mellano
        Keymaster

        Hang in there Ruthie, you can do this… You sound like a fighter

    • #13870
      Anonymous
      Inactive

      Recently I’ve developed pain in my right shoulder, elbow and wrist. My medication wears off before next dose I believe the pain is from tremor.

    • #13871
      Jean Mellano
      Keymaster

      Marcus, does ice or moist heat help the pain?

Viewing 16 reply threads
  • You must be logged in to reply to this topic.
Copyright © 2017-2019 All rights reserved.

©2019 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending
or

Log in with your credentials

or    

Forgot your details?

or

Create Account