Posted in Patients

My new tags

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I hope this inspires you as much as it does me.

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4 thoughts on “My new tags

  1. I try to take it day by day, it is the only way to go. Some days I’m ready to end it all other days I see hope and an extension on my quality of life. Just read an article on the extened shelf quality of life that DBSI provides. There is always a but – this one is that DBSI has little to no effect or inpact on drooling, I have gotten used to the “but” following a statement on the advancement of treating and curing PD.

    Thank you Bill W for having this blog, resource and tool

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    1. Paul,
      I know how you feel. Here is something to think about when making decisions.
      At times you will feel like quitting or giving up. You’ll tell yourself the battle is too hard and it’s just not worth it. This happens when you’re not feeling well and it’s difficult to move. I am especially susceptible to this during the medicines off periods. Make decisions when you feel well. Then remind yourself, you’ve already made the decision that you’re going to fight this disease as long as there is breath in your lungs. Go by what you know, not what you feel.

      My decision is that I know I have a lot to live for and that I want to live. I remind myself of this decision when I feel like “I’m ready to end it all.” I know that soon my meds will kick on again and I’ll feel better.

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  2. (The New Normal)
    An official diagnosis can be the catalyst we need to move us past denial. Relief slowly begins to creep in when this new normal is shared with others. Social support, from friends and family and from fellow members on My Parkinson’s Team, helps you slowly climb the staircase of grief into a more predictable plateau – the “new normal.” Forging social support from others with Parkinson’s can bring perspective and validation. Walking through life with Parkinson’s isn’t easy or what we asked for, but it makes all the difference to walk this new path with others who understand. Have you found your new normal?
    I typically do not share how I feel or the things that bother me, but I have shared with family and friends who just doesn’t seem to get it. Therefore, I decided to tell them why they do not see me on FB but I only go to PD support groups like this one. Finding a New Normal: Living with Parkinson’s Posted on June 01, 2017 by My Parkinson Team. Receiving a Parkinson’s diagnosis can inspire both relief and dread. It can be a relief to have a name for the misery that’s become part of life. On the other hand, a diagnosis of Parkinson’s can be upsetting because it labels us with a problem for which there is no clear cure. Diagnosis is like suddenly falling off a cliff. Abruptly, the life we had before diagnosis vanishes. It’s the beginning of a new life path managing Parkinson’s.

    Stages of Grief If diagnosis is like falling off a cliff, then grappling with this new reality is like going through the stages of grief. The 5 stages represent difficult feelings experienced during hardships and traumatic events, such as the death of a loved one, a breakup, or confronting an addiction. Grief is experienced by people who find themselves living with chronic conditions, too. The five stages of grief are denial, anger, bargaining, depression, and acceptance. The stages rarely happen in order, and many people revisit some or all the stages over and over after or all the stages over and over after diagnosis. Anger sets in when we acknowledge what we’ve lost – suddenly there are new realities because of Parkinson’s missing family dinners, worrying about medication schedules, running to endless doctor’s appointments, and losing friends because they don’t understand why we must cancel plans suddenly. Some days begin with bargaining and trying to live perfectly in hopes that it goes away. The frustration and disappointment in the chronic nature of Parkinson’s can lead to depression and sadness.

    (Hence Enters The New Normal): An official diagnosis can be the catalyst we need to move us past denial. Relief slowly begins to creep in when this new normal is shared with others. Social support, from friends and family and from fellow members on MyParkinsonsTeam, helps you slowly climb the staircase of grief into a more predictable plateau – the “new normal.” Forging social support from others with Parkinson’s can bring perspective and validation. Walking through life with Parkinson’s isn’t easy or what we asked for, but it makes all the difference to walk this new path with others who understand. Have you found your new normal?

    Not sure if a lot of people wonder why they don’t see me much on FB? Well it is because most of my friends and family don’t get Parkinson’s Disease, although it is not my life or who I am it has an enormous impact on who I am and my self-perception. Family and friends just don’t get it, they say oh I forget things it’s only natural, or I drool at night or toss and turn at night. Unfortunately, friends and family can be some of the most unsympathetic towards one’s challenges with Parkinson’s Disease.

    Oh, you look just fine = Yes, I am taking all my twenty something daily medications on time and there are no high or low times in the release of the medication.

    The best yet is friends who have told me how lucky I am to be retired = I am not sure I want to punch them in the face, break down in tears or just walk away. Like anyone would give up their health, social and professional life to live off disability, would you?

    The worst is sleeping in separate beds with my wife due “Night Terrors” not sure who claims this one PD or PTSD? All I know is I have never felt so alone in my life. What disturbs me the most is that the people I used to call friends and family I can no longer talk to them about this part of my life.

    I find comfort, caring and compassion in Parkinson’s /groups and blogs like My Parkinson’s Team; Parkinson’s Online, Parkinson’s Support and many others. I did not realize that I could have Parkinson’s Disease until one day at the dinner table my youngest child and daughter asked me why I don’t smile anymore? I did not have an answer for her – thought it was my job and so many other signs like tripping over every 5th imaginary crack, passing out, finding myself on floor. By far the worst is getting a sniffle or a cold – something about getting sick with Parkinson’s makes your world (Body) tremor and shake unstoppably, you become so weak you can’t physically make it the bathroom or bedroom on your own.

    I am NOT trying to make anyone feel sorry for me or pity me I just want people close to me to understand although I wear a smile and do my best sometimes it’s a struggle and I would fight through it. Due to “Masking” I have learned how to “Fake Smile” to ensure that I keep muscle memory.

    The “New Parkinson’s Normal” toes curling up and locking up in pain, drooling continues to get worst, and now I find at times I must put effort into lifting one of my eye lids. I’m not going to offer a whole lot of platitudes or encouragement because we’ve all heard them before. Most of the time the words we hear are well-meaning and do come with sincere concern, but at the end of the day, they will go home to the lives they have built and relied on for sixty or so years, and I will go home with Parkinson’s.

    Every morning I wake up and my stomach is churning and filled with nausea…. probably the meds or the mix of the twenty-seven scripts I take every day; my neck and shoulders ache with stiffness, the tendons of my elbows, wrists and hands cramping up.

    Sometimes I see old friends who say I look good, but they notice the soft low speech, and improper use of words and nouns in my sentences because I cannot recall the words. They try, but they don’t know Parkinson’s. Even if they research PD, they don’t know Parkinson’s. So far, I do consider myself fortunate as I continue to do most things for myself, but you and I know that PD is progressive, degenerative, and insidious.
    I guess that we never really have control of our own lives, but with PD that light in the tunnel isn’t the opening to a fresh morning sky filled with sunshine and daisies. We face new symptoms that take just a little more effort out of your life and your self-awareness and your dignity.

    Not complaining, my friend, just stating the facts as I see them. There is little self-pity as I don’t have time to waste on that. I’ve taken up boxing for exercise working the speed bag, I also lift weights, low weights lots of repetitions to ensure I do not hurt myself. If I fall or hurt myself in anyway the Parkinson’s amplifies the physical pain, then comes the tremor’s. and they are teaching me how to walk in a straight line, move my arms when I walk, make me think about right, left, forward and back. I must concentrate and focus on moving my feet, not shuffling when I walk; swinging my right arm, and on occasion opening my eye lids. So, I stay home, a full time or part time job would not work out well for me, I need a nap daily and soon I will probably need depends, since my bladder and anus muscles don’t work on comman By the end of the day I am exhausted mentally and physically. My one solice is that I have my fellow PD Warrions holding me up, encouraging me to just put one step in front of the other and live in the present and there is joy and fellowship to be had even with others that have been diagnosed with PD.

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