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Gulfvet

Post diagnosis projects and accomplishments.

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Gulfvet    36

I know that we often come to the forum looking for answers to problems that we as Parkinson's Disease experience, or to offer assistance to those facing the challenges of living with PD. 

That being said I thought it would be a good idea to focus at least one thread on things that we can do, instead of those things we are challenged with.

I struggled with this topic for a few days before posting it, because I don't like to brag or pat myself on the back.

But if we all would share some of the things we have done post diagnosis it may give hope to those just beginning on the journey of PD.

I truly think hope and inspiration can be just as powerful for managing PD as the medications we take.

So please share your accomplishments .

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Rogerstar1    385

 

Deleted by author

 

  

Edited by Rogerstar1
in summation and ending on a happy note

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New normal    1,275
9 hours ago, Gulfvet said:

I know that we often come to the forum looking for answers to problems that we as Parkinson's Disease experience, or to offer assistance to those facing the challenges of living with PD. 

That being said I thought it would be a good idea to focus at least one thread on things that we can do, instead of those things we are challenged with.

I struggled with this topic for a few days before posting it, because I don't like to brag or pat myself on the back.

But if we all would share some of the things we have done post diagnosis it may give hope to those just beginning on the journey of PD.

I truly think hope and inspiration can be just as powerful for managing PD as the medications we take.

So please share your accomplishments .

Hi Gulfvet

I agree that PD dx does not mean a drastic change in life.  I have been dx'd for 4 years and DH (dear husband) has been dx'd one year.  I recently drove our Harley trike with DH sitting behind for two hours.  The next week, DH and I went kayaking ...in separate boats..for two hours

We are now planning a 7,000 mile road trip with boats  and trike in a trailer...AND fulfilling our bucket list.  On our list is a hot air balloon ride, a wood carving seminar, a pontoon plane ride, deep sea fishing charter, 10 days on waterfront of Vancouver Island, BC, a kayak trip up Cowlitz river to dam...only a partial list. I will be 70 soon, DH will be 72. Of course, we are spending our children's inheritance...but intend to make memories for a lifetime. ?

Each day we accept...adapt...and laugh..... try to serve others...and thank our creator for the many blessings we have.

NN

Edited by New normal
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Linda Garren    747

Hi, Gulfvet.  I think you have a wonderful idea here and am glad you started it.  Please share your accomplishments post diagnosis, too!

I'm afraid I can't claim much since my diagnosis in the summer of 2014 except very small things here and there.  For accomplishing just the everyday things to keep on going for me is a major accomplishment, though!  :-)  One big thing I did do was prepare and sell my condo and made a big move to a wonderful continuing care community.  Was a very challenging process, as there was so much to do, with so little energy.  Am very grateful it all worked out, and I'm very happy here.  It's "home."  :-)  The people (staff and residents) are just as nice as can be.  There are about 2,000 people living here (or 2,000 apartments)...not sure which.  I can hear the crickets and the pond and tree frogs from my bedroom window at night, and there is a nice balcony off the living room for flowering plants in the spring and summer.  Last summer I put beautiful geraniums out, and they got eaten up by Japanese beetles!  I never would have thought I'd have a problem with anything like that here on the 5th floor.  One of those darn things came, and then he went and spread the word to all his family and friends, and they came too...  So no more geraniums.  No sir.
 

Edited by Linda Garren
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Hello, Gulfvet --

Here is my contribution.  It was when I was playing the piano that I first suspected I had a neurological problem.  By the time I got my diagnosis, I could barely play at all because of my lack of manual coordination.  Having studied classical piano for more than ten years, I was sad to lose that beautiful and rewarding pastime.  With medication started and some improvement observable, I tried practicing again.  It was pretty discouraging at first.  But as the medications grew more and more effective in fighting symptoms, I practiced more often.  Today I could never play on a concert stage, to be sure, but I can enjoy playing pieces of music that I never expected to play again!  (A few examples are Chopin's "Fantaisie Impromptu in C# minor," two Rachmaninov preludes, Mendelssohn's "Rondo Capriccioso," and Chopin's "Berceuse.")

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Linda Garren    747

How nice to hear that, J!  I hear that when musicians get PD they often are not able again to play their instruments or sing.  You worked hard, and it paid off.  To be able to play those difficult pieces again (If I'm remembering correctly, Rachmaninov is one of the most challenging of composers, isn't he?!) is such a blessing and a testament to your hard work and determination. 

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LAD    215

Well said gulfvet-

My husband & I have been taking ballroom dance lessons since my MDS looked at us and said "take dance lessons- particularly the Argentine tango".   Two years later, we just started the tango-but we do all the other dances. We are the crazy people at the bar doing ballroom to any music we hear. Did you know you can waltz to country music?!  My kids are amazed but proud of  their dad for doing this for me. But I can honestly say  I forget I have PD when we are busting a move.  

I also started an exercise program in my area for others with PD. Just getting started. Fingers crossed! 

 

Dance like no one is watching! 

 

This is a great idea for a thread!

Edited by LAD
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Gulfvet    36

Thank you to all who have taken the time to post so far.

I will post some of my craft projects most likely next week.

For the past four weeks we have been at the lake but will be "moving" within the next day or two.

My DW and I live in our RV so moving is not a huge undertaking but my internet is currently limited here at this campground.

One big major project I have accomplished was to dismantle a mobile home that had been damaged by fire on our daughter's property.

It did take a lot of time but I did it a little each day or so until finished.

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Linda Garren    747

Hi, Gulf.  I had recently suggested to my niece and her husband to consider living in an RV.  Lots of advantages, aren't there, in certain situations and for certain lifestyles.

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Gulfvet    36

Yes Linda there is a lot of advantages. I have personally avoided some falls because the space is so small there is always something to grab a hold of. But some disadvantages also like days of rain there is not much room to walk around and loosen up a stiff body.

Much like everything it has its pro's and con's. 

PD is the same way too it's all personal perception .

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miracleseeker    675

So true about the advantage of living in small spaces.  I've broken some near falls a few times while lifting my mom by leaning against the wall.  I'm moving soon to a much bigger space so I'm stressing out somewhat on that.  Safety in numbers I always say.  If everyone has someone living with them then there would be less accidents to report.

 

 

 

 

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jul    4

Hi all,

I'm in  pretty good shape PD-wise for now.  But I have made some positive moves.  1) I booked a trip to Paris.  I wasn't sure how well I would fare, but everything was great!  We got back last night.  2)  I bought a nice bike.  I got up early this morning and rode.  

Cheers!

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Good for you, Jul!  I discovered somewhere in my thirties that I had lost the ability to ride a bike, and that was long before PD.  I wouldn't dare try it now!

But travel, I find, is a big confidence booster.  Knowing that I can manage the planning and carrying out of all the details of travel is encouraging.  This is especially true when I travel alone, as I did a few months ago in order to finish a manuscript for publication.

Best of luck -- and keep riding that bicycle! 

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New normal    1,275

Good for you, J.  Definitely kicking apathy on its rear.  Accomplishing/finishing a project is a major achievement in our world.

12 day count down to bucket list trip......Kayak holder on trailer....check!  .....  Bass woofer added to new sound system..(1990 van)...check!  Tie downs for trike welded...check!  Cancel all dr appts for four months......CHECK !!!! :D

LOVE THE ONES YOU LOVE...

NN

 

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Have a great time!  I admire your courage -- a kayak??  In two days I'm taking a journey to New Mexico, where I will engage in such daring activities as strolling through art galleries, shopping, and eating heavily.  Very tame stuff!  But I am looking forward to visiting a state I've never seen before.

Again, best wishes for a wonderful trip!

J

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MurrayPD2    219

The biggest project I accomplished is remodeling our bathroom.   It took a while, but it is done!  The includes new flooring, wall tile, new counter, some plumbing, etc..

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LAD    215

My sister & I took my mom to Italy with a tour group this past summer. My mom had always wanted to see Tuscany where her grandparents lived.  I was terrified but so glad we went since my mom has had some health issues recently.  She would not go now. 

 

LAD

 

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MurrayPD2    219
On ‎4‎/‎28‎/‎2017 at 5:27 PM, New normal said:

Serious, Murray....complting things is monumental in our world.  Good for you!!

NN

Just now caught this reply.  Thank you!  Completion feels good.  I try not to dwell on things I need to finish lying around the house.  That just gets depressing!

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New normal    1,275
1 hour ago, MurrayPD2 said:

Just now caught this reply.  Thank you!  Completion feels good.  I try not to dwell on things I need to finish lying around the house.  That just gets depressing!

You are spot on with DH.  He has so many things he wants to do..apathy and fatique are his enemies. Thats why we thought we would go on road trip to escape the guilt.  Getting one project totally completed is a victory...good for you!

 

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Shaker Dave    37

Took a vacation and hiked in Colorado. Going back for a second time this summer. Completed large custom fabricated metal railings on our home balconies. Continued bowhunting with my son as he got his first deer from a ground blind (no more tree stands for me). Ran a lot of 5K's and completed the Warrior Dash last weekend (whew)! Almost 4 years past diagnosis, Keep hammering!

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Gulfvet    36

We all know how complicated being correctly diagnosed can be. The VA has some of the best MDS available, but they also have many health care providers who simply are not capable of diagnosing PD. 

So I have been working on trying to gain support of a few ideas to correct this in hopes that fewer veterans will face the issues I did. 

Here is my Facebook group and the email chain from the National Director of neurology for the VA.

https://www.facebook.com/groups/americans4vets/permalink/1593911713961740/

 

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