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    • #18189

      Where do you see yourself in 5 years? It’s a common question, but it might be hard to answer for someone with a chronic or degenerative illness.

      Before you were diagnosed with PD, did you have a 5- or 10-year plan for your life? Has PD interrupted your plans, or just delayed them? Do you still like to plan for the future or has PD changed your outlook on this?

    • #18191
      Toni Shapiro

      Hi Ally, Yes I do like to plan for the future, particularly now that I have Parkinson’s we need to adjust our retirement budget to reflect that. It’s been interesting how small purchases like shower seat with handles, toilet seat bidets, bed rails, canes, altered clothes so you can dress, shoes you can get on with help of 3 foot shoe horn, massage, physio therapy, etc. can all add up quickly. These things were not part of our original budget. The idea of nursing care or assisted living scares me financially as well as emotionally.
      Yes, prior to diagnosis we did have a plan. We were very much wanting to spend a year living in Europe. It had been a dream of ours. Unfortunately it will not be possible. I wish it was just delayed but we know we can not do it so need to change plans. Our new plan is to live as healthy and positive as we can, move our bodies as much as we can and take adventures even if it means in the slow walkers lane. Now if I can only get my super anxiety under control!

    • #18193
      Russell Wilson

      Hi, Ally and Toni,

      thanks for participating in the forums,

      different people respond to “this” in different ways. Me, I prefer to know what’s “lying in wait” for me if I can, and so in the years since first diagnosed (due to tremor and initial response to dopamine — suggested by me, rather than the doctors) have spent a fair amount of time reading up about PD. Like many of us here, “if I had known before” I think my PD could have been diagnosed years before it was formally diagnosed, and it would have helped me not only plan better for what’s happened, but cope better with what’s happened while it was happening, for me. We now know more about the non-motor symptoms sometimes accompanying PD. For me, for several years I suffered from anxiety and depression —   and often felt confused and lost about my “dreads” — feelings of dread that would come upon me,  with associated “self-punitive” thoughts — “what’s wrong me with, why am I having these difficulties, why aren’t I sleeping, why am I experiencing these aches and pains — my doctor obviously doubts my common sense, he can’t account for them???” … etc

      Like a lot of people with PD I had to give up work early, but for several (4) years was happy experiencing relatively mild physical symptoms, but only since Christmas have my physical symptoms become more troubling, with marked rigidity, and balance problems making it much more difficult to engage in “forced exercise” almost impossible — I used to especially like walking — and short periods of jogging! (like across intersections). With all these things I’ve had to think more about planning for the future — what can I replace my walking exercise with; walking up the hills around home is nigh impossible — where can I move to; what in home help do I need? … can I get? Can I even get something to help me with typing on the computer?

      So … Lots of questions, not many answers … yet!

      Best wishes to you all

    • #18207
      Mary Beth Skylis


      I always enjoy your posts, thank you for sharing your thoughts and experience. I think that a lot of people suffer from anxiety without recognizing what it is. I’ve been guilty of that, myself. Do you find that your anxiety levels worsen while dealing with particular problems? For me, financial instability really shakes me up. Or feeling like I’m not in control of the choices I make.

    • #18208
      Mary Beth Skylis


      I’m a planner, too. I like to be able to construct a few different scenarios to deal with various obstacles. My Dad and I used to go on walks too, but he doesn’t find enjoyment in it anymore because PD hurts. But he does ride a stationary bike and he boxes at Rock Steady three times a week. Have you found any ways to adapt to some of the changes that are happening?

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