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    • #17478
      Ally
      Participant

      Depending on your age/stage of life and how your Parkinson’s is progressing, you might be thinking about downsizing or moving to a more accessible home. Perhaps you live in a rural area and are considering moving to a town or city where you can be centrally located relative to your medical team, physiotherapist and other important amenities.

      Are you thinking about downsizing, moving or modifying your current home to make life with Parkinson’s easier? What are some of the factors you’re considering? Are you looking forwarding to making these changes, or dreading it?

    • #17491
      Shannan
      Participant

      My husband and I have thought about selling our 2 story home and building a single story open floor plan.  We started thinking about this early in my diagnosis (5 years ago) not really because of my Parkinson’s but because he realized he wanted a single story like I did but instead we bought our 2 story almost 11 years ago when we got married. Now that my Parkinson’s has progressed we have thought more about it, but I think I’m the only one thinking about it in terms of practical for the future and my Parkinson’s progression which I hope will slow down due to recent DBS surgery. I’m only 39…I have a 3 1/2 year old I want to enjoy and play with.

    • #17503
      Mary Beth Skylis
      Keymaster

      Hey Shannan,

      My Dad switched homes about 4-5 years ago, not long after he was diagnosed with Parkinsons. His current house has two stories, and up until recently, he spent a lot of time in the basement. I do think that having a simple layout would help him prevent freezing episodes. Today, he mostly sticks to the main floor. He still navigates stairs pretty well. But my brothers are carpenters and have considered adding a ramp to the back porch when it gets harder to navigate steps.

      What was your experience with DBS like? My Dad underwent it this Fall and has seen a number of great improvements. Hopefully we’ll discover a cure in the near future and you won’t have to worry too much about enjoying your kiddo.

    • #17537
      Toni Shapiro
      Participant

      Hi, this post is timely because my husband and I have been entertaining the thought of a move due to my condition.  I can’t drive anymore but I can slowly get on  a bus or train and it helps to make me feel somewhat independent.  We would like to live in an area where public transportation is more available and less of a problem than it is where we presently reside.  Also we have recently thought about our future with this disease and realize out of town family will be coming often to help out when necessary and we just have a small condo. We need more space to accommodate them or at least reconfigure things here for a murphy bed or bunks or something.  Moving is expensive and just the thought of it makes us stressed and stress is my worst enemy. Not sure what we will decide.

    • #17544
      Don
      Participant

      My wife and I spent a lot of mainly enjoyable time maintaining and improving our large, intensive garden of about 1 hectare on some steeply sloping ground in the scenic Adelaide Hills.  Some little while after I was diagnosed with PD we decided to bite the bullet and downsize onto a more manageable property. This happened about 3 years ago but my symptoms have not noticeably changed since then to the extent that I have quit taking any medication.  If we had stayed I could have well managed but although we do miss our large garden we are no longer tied to it during the summer months when watering is necessary and there is not the concern about loss of the garden in a bushfire.  So my PD diagnosis is a cloud with a silver lining.

    • #17553
      Mary Beth Skylis
      Keymaster

      I’ve moved around alot over the last few years, and I do find the changes to be scary. Sometimes you have to get to know a new grocery store. We accumulate so much stuff while we’re in the same place. And having to go through your belongings to determine what should stay and what should go is really hard! As grateful as I am to have been able to shape my life as desired, change can be really hard.

      My parents down-sized 5 or 6 years ago. And it was actually unrelated to my Dad’s PD diagnosis. While they were purchasing their current home, they learned that one of the previous inhabitants also had PD. Dad likes to daydream about warmer weather (they’re in Michigan). But they’re both pretty confident that they want to stay put and find ways to accommodate his needs as they become more evident. Like they’ve talked about adding a ramp in the back yard. And he stays on the main floor, for the most part. I don’t know that there’s a simple answer to the moving question.

    • #25889
      Simmon Belka
      Participant

      My father was diagnosed with Parkinsonism several years ago and now lives in a nursing home.

    • #25895
      Rick Tabakin
      Participant

      As Parkinson’s progresses, and it will, you will be much better off in a one-story home

      • #25896
        Ally
        Participant

        Hi Rick, when did you make the move to a more accessible home? Were you able to remain in the same community?

    • #25901
      Roy
      Participant

      <p style=”text-align: left;”>A few years after Roy was diagnosed, we moved to NC where my husband’s son lives so we can be near him. However, we are living in a very large one-story home. I am not able to hear Roy if we are at opposite ends of the house, which is a concern. We have tried walkie-talkies, but he had a very difficult time working his. Also, keeping up with such a big home is getting to be too much for me.
      We are currently looking at several communities in our small city that have homes for retirees. The smaller homes are built for aging in place. One story, floors very level, showers with little or no step, wide doorways that easily accommodate walkers or wheelchairs. The biggest problems are the cost and the higher interest rate. We’re hoping something comes available that we can afford.</p>

    • #25910
      Jim
      Participant

      Diagnosed 2 years ago, just haven’t admitted it until now. I have the usual balance issues, but the change in my moods is what is driving me crazy. My wife says I’m grumpy so much more and will get upset very easy. is this normal?

      • #25914
        Kate
        Participant

        Jim:

        Mood changes as you describe it can be a common non-physical sympton with many PD people as I understand it,  Especially depression, which can be linked to the “grumpiness” you describe.  Accepting and dealing with PD can be very challenging and frustrating. Talk to your healthcare primary provider to see if medication, perhaps a mild anti-depressant might be appropriate.  Also I have found exercise, especially walks outside in nature to be very beneficial for my moods. It’s free, requires little or no equipment, and can energize your entire body.

        Kate

         

        • #25915
          Kate
          Participant

          Jim:

          Are you attending physical therapy to address balance problems? If not, look for a physical therapy service near you that you can go to for balance training.  If you can find a physical therapy center that is familiar with PD movement and gait problemsm even better.

    • #25913
      Kate
      Participant

      I’m widowed, 72, live alone, have no children and no family in the immediate area but am blessed with a wonderful friends network.  I live in a historic old log farmhouse in a rural area.  For the time being I am living on the first floor in a MBR that has a full bath and laundry, so my present situation is like living in a single floor ranch. I love my house but I know I wull have to move on at some point,  My PD seems to be progressing slowly in the five years since initial diagnosis. I have wonderful support services that I attend 3X per week (PT, OT, Cardio and Rock Steady Boxing}. I’ve looked at CCR age in place communities and the fees are truly scarey! As a retired RN/BSN/MSN I have a hard time making such a huge monetary commitment and believing that the CCR skilled nursing care will be as well run in future years when I really need it, as it is now.  My house is paid off and is probably my cheapest cost of living option for the time being until I decide on an alternate residence. i

    • #25917
      Dave Berry
      Participant

      I’m looking forward to the move.  We will sell our dreamhouse that we built 20 years ago and I’ve hardly ever gone to the top floor in the past 5 years.  We will be closer to our grandchild and get to watch soccer games and help with family projects!  We are going to a retirement community that we can afford.

      I will miss having all the space for things we have but in the end they are just things.  They are not family heirlooms as we lost those in a house fire previously.

      We have found in our next home a sense of warmth and community which we never found in Charlottesville.  We’ve been here over 40 years and have friends but it’s an expensive place to live with the  real estate taxes…..

      The family will get to pick items they’d like to have.  Most will go to charity, our children do not have the same taste in stuff or the room.  I will miss some of the artwork and clutter.

    • #25918
      Linda Skon
      Participant

      I’m thinking both about downsizing/ moving in the future and also about remodeling our current house for eventual resale. The $64,000 question is how to predict when we will no longer be able (physically and mentally) to empty a house we’ve lived in since the 1980’s without prematurely giving up the benefits of a paid-off single family residence. The second question is how to prepare for an unexpected crisis that requires us to move.

      Unfortunately, my husband and I have had the experience of caring for my father, my mother, and my stepfather in their final years, which included moving them long after they should have moved and cleaning, repairing, and selling their houses. And arranging for their care in assisted living facilities. I do not want to burden my children to the extent I can avoid it.

      I am 71 with PD. My husband is 74. We have a one-story house with remodeled bathrooms. We are gradually updating indoors and outdoors. We are making progress on clearing out closets. What we need is a crystal ball.

    • #25919
      Jim
      Participant

      We downsized about 20 years ago due to the M.S. We now have a 1100 sq foot one story house. Before we moved, we had to have the one story remodeled to accommodate my wheelchair. 2 years ago, I was Diagnosed with PD, and I really appreciate the changes we made back then. It can make such a difference.

       

    • #25920
      Donna K
      Participant

      I want to move, but the amount of stuff I have, well it’s overwhelming. Where do I go?  I don’t have enough $ to go to a senior community with nursing component. Assisted living is similarly priced.  I live just above poverty level at $32thou and can’t afford more than I spend on the mortgage. I’d like a condo, either first floor or in an elevator building. My son wants me to stay in my house, and he lives close and will come over when I need help. I just want to need less help.

      • #25942
        Dave Berry
        Participant

        I shopped a lot of retirement communities.  The cost variation is tremendous!  In Charlottesville Westminster Canterbury wants $800k to buy in. It’s luxurious to the point of being a museum rather than home.

         

        We are going to Kings Grant in Martinsville Virginia.  A big 2 bedroom house has a buy in fee of $130k. Monthly is $1500 more or less.  The buy in can be done as a mortgage . Still pretty high .

        My parents were in a place with sliding scale.  It’s usually full but there are many places like Green Hills in West Liberty Ohio.

        Many places don’t put the fees on the website.  It takes some calls.

        I would not suggest calling A Place For Mom. They call and touch base too often.

        Happy shopping and exploring!

    • #25925
      Fred Barnett
      Participant

      We downsized from a 2 story home to a 1 story senior living community one year ago (I was diagnosed with PD in 2011). It was difficult but we made it. I still have fairly good mobility and no falls, but many other health issues related to Parkinson’s. We are enjoying a quieter community & two blocks from a hospital if we ever need it. Our home is one side of a duplex, my neighbor on the other side also has Parkinson’s. There are also exercise programs available and a pool. The only drawback is the monthly association fees which are pretty expensive but they cover everything outside the house like grass cut, sprinkler system, etc. . We are happy that we moved before my Parkinson’s got worse.

       

    • #25949
      Andrea
      Participant

      This is the question we’re struggling with. Our 2 story family house is a lot to keep up with and stairs to the upstairs master are becoming problematic. Don’t really want to live in an over 55 community but those have houses that are appropriate and finding a single story house in today’s market is nearly impossible. I’m also worried about the stress that selling/buying/moving would have on my husband. I’m going in circles…

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