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    • #25270
      Ally
      Participant

      Living with a chronic and debilitating disease like Parkinson’s means having to accept big, difficult changes and grieve things that you can no longer do. 

      What are some of the losses you’ve grieved since being diagnosed with PD? Do you have any advice for dealing with loss?

    • #25288
      Gauri
      Participant

      Dealing with loss
      I experienced 2 major losses.
      First,I had to discontinue learning my favorite hobby which was learning Indian music and singing in the initial stages of Parkinson due to symptoms on an increasing scale as i was not treated.
      Secondly
      Most probably I suffered from Impulsive control behavioural disorder as a result of side effect of a drug Pramipexole. Such type of disorder resulted in tarnishing my social image, a loss of self respect, loss of self esteem…nd loss of money too.

      • #25296
        Ally
        Participant

        Hi Gauri, thank you for sharing. Those are really hard losses to come to terms with. How are you coping? Have you been able to repair any of your relationships, rectify your finances, and/or find ways to enjoy your passion for Indian music in a different way?

    • #25318
      Gauri
      Participant

      No….I hv estraged relationship with my husband now. One shouldn’t expect anything from others but truly speaking he hasn’t been a caregiver. I only want him to recognise the psychological impact of the disease but he’s unable to understand at times ….I feel.
      Under this situation I happened to meet someone on social media and I fell in love with him. I also intend to keep relationship with him. Apparently I gave him money which he is going to return but in my husband’s opinions its all a scam. But honestly I invested in bitcoin and lost.
      So financially I am at a loss. In my personal life all bonding and family ties hv undergone changes.
      Nothing seems to be the way it was!
      I feel lost in the world

      • #25438
        Ally
        Participant

        Hi Gauri, I’m very sorry to hear about the breakdown of the relationship with your husband. That is very hard. How are your relationships with your friends? Do you have a community group (like a church or fitness club, for example) that you feel connected to? I hope that you are finding some connection in this forum.

    • #25363
      Krukar
      Participant

      Hi Ally,

      I consider myself extremely lucky. My wife is an absolute Peach as we battle our mutual health issues. Tom and Jeri could not be better cat companions and we love them lots. We have a supportive family. I lost my 90 year old “Aunt Ester” who I loved a lot but she was ready to go.

      Recently I purchased the probiotic Neuralli and so far it is working very well after 20 days. My walking is better along with my sleep and mood (just ask Fraya). The course of this is program is 90 days to receive its full benefit. Neuralli is not a cure for Parkinson’s but so far it has helped to modify my symptoms. I really think attacking Parkinson’s is my only way of coping. You and your support has really helped, Blessings, Mike

       

       

       

       

      • #25439
        Ally
        Participant

        Hi Mike, although I’ve only met your lovely wife Fraya briefly once, it is clear you have a very close and loving bond. I’m so happy you found each other and can support each other through the highs and lows that life inevitably brings. And of course … Cats are awesome!!

        I’m also glad to hear that Neuralli is having a positive impact on your symptoms. Thank you for sharing. 🙂

    • #25386
      Sherman Paskett
      Participant

      I could put it all under the heading “Loss of Mobility.”

      After successfully dealing with PD for 11 years, last year I had a back injury that required surgery, and immediately after surgery my PD symptoms had surged. I required a 50% increase in C/L just to get symptoms back to where they were pre-surgery, and the rate of progression of the disease has accelerated.

      I move slower, I shuffle, I have balance issues, I have had to quit driving. I hurt. I feel as if I have aged ten years in the past year. My advice to anyone with PD: Avoid serious physical trauma (good luck with that) — getting hurt can really mess with PD.

      • #25440
        Ally
        Participant

        Hi Sherman, thank you for sharing your experience. Are you doing physical therapy to manage some of the post-surgery pain and related issues? What is the prognosis for recovering some of your strength and mobility with professional support?

    • #25394
      Judy Kay
      Participant

      Loss of mobility  stopped me from line dancing, and makes it so hard to do any and everything that I have taken for granted.

      I danced 4 to 5 days a week for about 10 years and all of a sudden, I could not shuffle to the right.  Steadily got worse and withing a few months I could not dance a step.  Seriously scary and depressing.  But, I have managed to maintain my involvement with the dancers and all of my other social activities.  Staying involved and looking after others, has given my a reason to simply move the best I can.  That plus  a little anti depressant medicine helps to keep me going and somewhat positive, in spite of it.

      PD is no fun, but can be a rewarding challenge all the same.

      • #25441
        Ally
        Participant

        Hi Judy, thank you for sharing your experience. I can only imagine how difficult it would be to let go of a beloved activity like line dancing, but I’m happy to hear you’ve found other ways to stay connected to that community. I’m sure it’s not always easy, but your positive attitude is encouraging. 🙂

    • #25433
      richard cooling
      Participant

      Wow Ally, good topic!  Dealing with loss and acceptance are perhaps the hardest part of the disease for me.

      PD stopped me from working at 60, while I planned to work until at least 70.  I fully expected to spend my retirement traveling with my wife, etc., just like the TV commercials.  So, the first loss was my lucrative career and active retirement plans, and with them, the loss of my identity.  That was a very difficult transition, but one that every new retiree may go through.  To cope and fill the void, I found new things I thought I might enjoy, looked over class catalogues, read books, and renewed my interests in old hobbies and things I had always loved.  I turned back to a group of friends for regular coffees, dinners, movies, etc.  So, the loss of my occupation and identity waned over time.

      But, the much more extreme loss was the loss of my health, physical strength, and ability to walk.  (The loss of the ability to hike while sojourning with nature was particularly hard.). Such a quick and dramatic loss made me turn into my self.  I realized I was just one person of  the 7 billion on the earth.  I realized that every person who is born will also come to this end.  I realized that we are all dying, but with PD, we are dying in slow motion (literally and figuratively).  I read a lot about the process of dying and grieving.

      The way I overcame this more significant blow was–acceptance.  I no longer pretend I am well for appearances. I fully accept I am damaged with significant limitations.  I focus on what I can do rather than what I can’t.  I tell people I have PD.   (Although it’s obvious,) I don’t hide it.  With acceptance came peace.  I am now happily crippled.  There are so, so many worse ways to go.  The acceptance has given me insight and empathy for the others who suffer.

      Desiderata and The Prophet are my guideposts.

      Kind regards, Richard

       

      • #25442
        Ally
        Participant

        Hi Richard, thank you for responding. I’m glad this topic has prompted a lot of discussion, even though it’s a painful topic in some ways. I really appreciate the honesty with which you shared about the losses you have mourned, and I found encouragement in the way you framed your newfound perspective on life. I admit, I had to Google both The Prophet and Desiderata. They both look interesting and I’ll be looking into them further!

    • #25443
      Toni Shapiro
      Participant

      Hi,  I would say having to give up my driver’s license.  I drove for 60 years and loved every minute behind the wheel. I drove a stick shift until I couldn’t manage the clutch anymore and although driving an automatic was boring it still gave me a good sense of independence. It was incredibly sad and painful for me to give up driving altogether but any risk of a possible accident being my fault and maybe causing harm to someone was too awful to think about so I turned in my license. I felt like a failure and a terrible burden to my family. It honestly only took about a week of feeling sorry for myself that I got on a bus ….and guess what! I enjoyed myself!  I live in a not too friendly public transit area but I manage and I do it on my own which is very freeing. Thank you Ally.

      • #25448
        Toni Shapiro
        Participant

        Why is my post on hold?  Thanks! Toni

        • #25482
          Ally
          Participant

          Hi Toni, it looks like the problem has been fixed! I can see your other post. Is it showing up on your end?

      • #25483
        Ally
        Participant

        Hi Toni, thanks for sharing your experience. Giving up driving is a very difficult thing to do, but I commend you for thinking of others’ safety first. I’m also happy to hear that adopting public transit has actually turned out to be a positive experience. Do you find it allows you more time to read, listen to music/podcasts, or just people watch while you travel? Those are some of the things I enjoy doing while someone else is behind the wheel. 🙂

        • #25487
          Toni Shapiro
          Participant

          Hi Ally,  Yes, Thank you.  My post appeared a day or two later.  The bus taking has been fun except when I need to take my walker. I like to people watch too.  It’s like I am a part of society again. Unfortunately I can’t read well anymore which was second to driving in what used to give me the greatest pleasure.  PD has played around with my eyes to the point it’s almost painful to focus on the print. Just sitting there looking out the window is good.  I have noticed many things of interest that escaped me when I drove.  (Ally, I saw a post and from it I am thinking  you are also Canadian.🇨🇦)

        • #25567
          Ally
          Participant

          I am indeed Canadian! Not sure how I missed this reply – sorry for the delayed response, Toni. I’m in the GTA. 🙂 What about you? Is the transit decent in your area?

        • #25575
          Toni Shapiro
          Participant

          No, I live in the suburbs and transit isn’t good here however Vancouver, 20 minutes away, has a good transportation system that is expanding as I write this.

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