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Newly Diagnosed

Newly Diagnosed

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#61 lu states

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Posted 17 September 2013 - 04:43 AM

glad you got the PCP all worked out, and your meds changed.  hope it helps....sounds like you are optimistic it will.   have a jig in the rain for me, i'm great, but not even a drop of metaphorical rain to play in.  too much finaggling going on !   take care,  lu



#62 Jaxs1949

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Posted 17 September 2013 - 08:40 AM

Also thank you lu.  You bet pal dancin  :razz: is the plan.  Hope everyone has a great day.  Jaxs 1949



#63 Jaxs1949

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Posted 22 September 2013 - 11:37 PM

Well we had an interesting visit with my VA Neuro Dr. Harris on Friday the 20th to go over the recent hospitalization for fainting.  I am frustrated that the civilian Doc's I saw did not pay any attention to Parkinson's and wanted to take the problems in a different direction.  I was frustrated with the civilian hospital for not giving me Cavadopa on time.  Anyhow, going to have a busy week with a new PCP appointment on Monday, Renal on Wednesday, Mental Health on Thursday and a Vascular test that afternoon.  VA is ordering an MRI of the spine,  not sure when that appt is yet.  I keep reading all of  the different posts and find most everyone amazing.  So many emotional challenges, I feel bad at times I am a problem for my wife but she is so solid.  Thank you Mo.  Well I hope everyone in the group is well.  Have a great week, I am going to do my best.   I can muster up a little more hope and courage from deep inside me.  Jaxs1949



#64 Beau's Mom

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Posted 23 September 2013 - 09:01 AM

Jaxs, praying for the best possible outcomes on all your tests. You are right, doctors who know nothing of PD can really mess you up in a hospital setting.  Have you sent for your free Aware in Care Kit from NPF? It has information essential for the folks who are treating you: docs, nurses, anesthesiologists! Be sure to get one and keep it with you for those times when you have to deal PD with uneducated caregivers.


Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#65 Jaxs1949

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Posted 23 September 2013 - 09:10 AM

Good Morning Beau's Mom.  Thanks for the thoughts and prayers.  First thing I did when diagnosed was get the Aware Kit.  Had all the paperwork filled out gave copy to Nurses and Doc.  Not once was it followed.  I even brought it verbally when they came in first thing in the morning.  And as it appears they all ignored PD as a primary cause of the blood pressure challenges of passing out.  "You need to wear your compression stockings and drink water" was one of the assessments.  I have read almost all of your postings and you seem to have a firm grasp and I am thankful for all that you share.  So I dance for another day, thankful for the chance and  thankful you write so well. :razz:   Jaxs 1949



#66 lu states

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Posted 23 September 2013 - 09:17 AM

jaxs, what a week you have coming up !  i wish i could take one appt. for you, so you could relax one day :)    guess it doesn't work that way.    i have a week of quietly doing some drawing, to see if i still can.  my symptoms have been mild the last week or so, i feel guilty, which i know is silly, but i do.    i'm going to a speaking engagement about medi-care on thursday, but not expecting any relief from them.   take care this week, and dance when you can :cool:   lu :cool:



#67 Jaxs1949

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Posted 23 September 2013 - 01:41 PM

Lu thank you as always.  No problem on the appointments, just glad they are coming.  Glad to hear your doing well, mild is good, don't feel guilty feel empowered.  Your doing a presentation or your meeting with medi-care?  We be dancin lu, hope you can too.  :razz:  Jaxs 1949



#68 Jaxs1949

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Posted 23 September 2013 - 10:28 PM

Hey gang, just thought I would update you to say the new Tricare Primary Care Doctor is a "Rock Star!"  What a dynamic young Doctor.  He will now care for my wife and provide some medical needs for me.  Did not seem offended that the VA is responsible for 90% of my care.  Seems to want to work with the Doctor's from the last hospital stay as well as my team at the VA.  Talk about a win win situation.  So we are really dancing tonight.  I am curious of one thing and I am going to address this with him tomorrow, he listed all the Diagnoses but guess which one he left off PARKINSON's???  So I have to get blood work done, I wrote a letter with his visit summary asking why this was left off.  Don't think Tricare is going to be interested in getting me some help if it's not listed?  So now we wait for Tricare to approve some referals.  For everyone I leave a wish "May joy and peace surround you, contentment latch your door, and happiness be with you now
and bless you evermore!"



#69 Jaxs1949

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Posted 26 September 2013 - 11:46 PM

Had an appointment today at the VA with a Mental Health professional.  Doctor very knowledgeable about Parkinson's.  We just talked about coping and my feelings about the diagnosis.  The VA is very concerned about suicide.  I told her I had not plans to kill myself.  But I really appreciate the deep concern she had.  The it was off to Southwest Vascular for a consult.  Guess I have some bad vains they want to fix according to their Ultrasound.  I have had 3 of these tests in the last few months and nobody has ever said I have broken vains.  Finally got an appointment to go back  to the eye clinic to see why my right eye is not working right?  I still think it has to do with passing out 6 times back the end of August?  Had a real diabetes scare today, got stuck in a sand storm and BS went down to 59, not a good situation.  Thank God Mo was driving.  I did not get to watch the new Michael Fox show, did tape it.  Reading mixed reviews?  Robin Williams show was awesome.  Well guy and girls, I pray you are all well and being taken care of.  



#70 lu states

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Posted 27 September 2013 - 11:45 AM

jaxz, sounds like your day was mostle ( i am not going back and fixing typos anymore, iy happens too often when mu hand hitd thr wrong key, and it takes so l o n g ), a few bumps, but yoy now have a good dr.    yesterday was a hard day.  drove an hour to a freinds in a senior center, then wennt to a lecture on medi-care, that had been cancelled.  i alreday fely out of it, which is rare for me.  he had a tire orblem , so went and fixed that, ran some errands, took me to dinner ( first dinner out in probably 2 years !!  yum ! ), and then i had to get gas and drive home.   when i was driving down to petaluma at noon, my eyes were either playing tricks on me, or the changed the speed limit between here and the next town over from 45 to 445 mph.  very unnerving.  before i left, my friend said to drive carefully ( i am a ver careful driver ), lots of his friends are getting night blindness.  i drive down this wide street , look across and see a gas station....the road had those arrows fro right and left turns, or so i thought, so i turned left and drove over the median in the middle of the street.  i expected to see my oil pan out there.  humiliating.  and of course, then i look drunk anyway.  drive off down the freeway, until i can get on some of the smaller roads, but i couldn't see.  the lights from oncoming cars lokked like big sparklers, and obliterated the yellow " knobs " and lines.  it wa s awful.  i want to get my eyes checked, but my insurance doesn't cover it ( which just went uo $40, taking all but $2 of my diability check now ...thanks a lot !   i now have 2 dollars until the 10th to live on, nad that one pays my bills ) and, i wouldn't be able to buy glasses anyway.  but i would like to know what was happening.  i use fake readers from the drugstore, and just don't happen to drive at night, so this was all very scary to me.   my day trips from here to the next town over have alwayys be en fine.   i wa so beat, i slept in my cloths, minus the boots.  i usuallt don't eat anything until 7 or 8 at night, but i'm staeting to feel beat up all the time now.   really weak.  things i think aren;t good for me or my disease.   anyway, haven't had any incidents except falling, and the usual gait, and trmors, and having trouble taking that first step, so this was new ans scary.   thanks for allowing me a place to vent.....lu



#71 Jaxs1949

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Posted 27 September 2013 - 01:31 PM

Lu I feel terrible.  That is one scary story my dear friend.  Finances are tight I think for everyone.  We are just waiting for AF Retirement to go in the end of the month.  I wish there was something I could say or do that would help.  They are putting me back in the hospital today.  Still can't get the blood pressure right and because of the steriods I am so swollen.  My wife pulled my keys to drive a few weeks back when I passed out 6 times.  VA is going to give me a new eye exam.  All we can do is try our best.  I have you in my prayers and I hope you can relax this weekend.  Take care Lu.

Jaxs1949



#72 lu states

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Posted 27 September 2013 - 02:57 PM

no jaxs, money is just money, and i have had papers all around trying to figure stuff out.  that is why i brought it up AGAIN.  you know, it has been sitting right in front of me, so no escape.      the thing about yesterday was feeling my symptoms worsen during our 7 hour marathon.  i haven't done that beffore, and the eye thing at night was scary.   i feel you have it so rough, and i usually have it so easy, it just made me write that i had a bad day, and got the tiniest little look at yours.   not moving toda, except to maybe shower or clean up, and get back in bed, in actual p.j.'s !   i was so exhausted when i got home last night, i just fed chester the cat, walked to my bed, took my boots off, and slept in my clothes.  in my life i've never ddddddone that before, except maybe camping. i shall lounge, do some reserch, and maybe do some of my photo paintings............then tomorrow i'll be dancing again.  i understand i might actually be dancing in the rain on monday..... YAY !    you have a good weekend as well my friend.  feel good.  see the grandkids if you can get out of the hospital soon enough.   talk to you soon !    lu



#73 Jaxs1949

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Posted 27 September 2013 - 03:49 PM

Lu thanks for responding back.  I certainly do understand the marathon and the symptoms. Lu I don't have it any worse than anyone in the group. I like that your dancin on the weekend.  Still waiting for a phone call to head to hospital.  But Lu I am fine.  Have a relaxing weekend my friend.

Jaxs1949



#74 Jaxs1949

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Posted 03 October 2013 - 10:33 PM

Hey group sorry for not posting any updates.  I just spent six days in the Chandler Regional Hospital for Renal Insufficiency.  They got most of the swelling out of my legs and feet, but not all of it.  They certainly were not concerned about my Parkinson's again, my medication never given on time.  Never much interested with the body tremors, hand tremors, just looked at it and went on.  I guess they were focused on the kidneys.  God forbid you bring it up,  I am blessed to be home.  I had to cancel my VA Renal appointment Oct 1 and got it rescheduled for Oct 29th.  Have an MRI of my spine on Tuesday at the VA ordered by my Neurologist. The past 30 days have been an adventure.  Will visit new primary care and order new referals.  Thank you for all our support and prayers. Jaxs1949







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