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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.


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

 

First symptoms: right-hand tremor, constipation and restless arms 1978 (age 25). Depression and anxiety (non-motor symptoms) began in 1989 and worsened through the years. Last inpatient episode June 2013.

 

Diagnosed December 2010 by a regular neurologist (age 57). After negative reactions to Requip, Mirapex and selegiline began Sinemet 25/100 3x/day. First MDS visit in Houston in February of 2011 was inconclusive. Second MDS visit at Baylor Fort Worth in May/June 2011 diagnosis changed to Parkinsonism, Sinemet stopped. Third MDS visit in August 2011 in WA State: received a confirmed diagnosis of idiopathic PD which had started on the right side and had now crossed to the left side as well. Restarted on Sinemet 25/100 4x/day. A short trial of Amantadine caused audio hallucinations in September 2011.

 

Current medications at age 63: Duopa gel via PEG-J tube, 6ml loading dose; continuous dose 2 ml.  Trazodone 150 mg at bedtime, Fluvoxamine 300 mg at bedtime. Clonazepam 0.5 mg morning and afternoon, 1 mg at bedtime. Vit D3 2x/day, Calcium Carbonate Susp. 5 cc daily, Baclofen 10 mg 3x/day, Flonase two sprays 2x/day, Calcitonin-Salmon nasal spray once daily (for osteoporosis). Gel eye drops as needed throughout the day, Restasis Eye drops 2x/day, Nighttime eye ointment at bedtime. 02 2L per nasal cannula while asleep. Walker, electric wheelchair, moist and soft or pureed foods and 135 caregiver hours per month keep me moving.

 

Edited 2/5/2016


#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


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#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:


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#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!"


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#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.  


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#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


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#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


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#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


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#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



#75 Jaxs1949

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Posted 04 January 2016 - 01:23 AM

Hello,

It has been a couple of years since I posted anything about my journey with Parkinson's.  Sure met some amazing people here.  I went back and read some of the posts and the amazing replies you gave.  Some of you might ask "why have you be gone for two years?"  And I honestly do not have a great answer.  A year ago August I fell and broke my ankle and spent three months in a nursing home.  Has to be the lowest point of my life.  Sad to report that they gave me medicine that did not relate well with another medication and I went into a world I have never known.  I am so ashamed of what I put my family through.  But through the grace of God and many prayers being said I came out of it.  Then my outstanding renal team recommends I see a Urologist.  The VA at the time does not have one and I get sent out.  Long and short they find Bladder Cancer and got it removed.  Happy to report all check-ups since have been negative.

 

I had written several years ago that one of the frustrations is people in the hospital business do not listen to us or follow the recommendations of the Parkinson Foundation.  Same thing happened last year and as stated really pushed me over the edge. With the help of an amazing Psychiatrist and a Neuropsychiatrist I am on the mend.  Sad to say the horrible hallucinations have not disappeared but I now love meditation.

 

So many changes at how business is done at the Phoenix VA and the VA Hospital System in general has been a major problem for me. Please understand I am not complaining I am just stating that if you cannot be seen by your specialist within a certain period of time they have a Choice program and you can see an outside Doctor.  So because I could not see my regular Neurology Doc they sent me out.  In hindsight I feel bad for the Doctor that I got assigned to.  The folks at the VA did not think this one out very well.  I was going to see a gift Neurologist for ONE appointment?  Then after the first appointment you have to ask the VA for another appointment?  In the mean time he orders up all kinds of tests and the VA was not real happy with that.  So now I have to call this amazing man up and say that the VA is assigning me a VA Neurologist and I will not be coming back.

 

So we get an appointment with a new VA Neurologist that is a Movement Specialist, seemed very nice at the first meeting, takes me off Cardopa/Levadopa and put me through all of the same office games that the other Neurologist's put me through to reach their diagnosis.

PLAN:

1. Advised to hold use of Carbidopa/Levodopa 10/00 for 6 weeks as DE challenge
for possible behavioral changes (excessive buying) related to dopamine.
2. Re-examine in 6 weeks off Levodopa.
3. Consider DaT scan.
4. Follow up assessment in 6 weeks. (This appointment was in May 2015)
 
Six weeks came and went and not a word from anyone?  I call and ask that a plan was made and you have not kept up your end of the deal. I cannot be seen until October 14th. That appointment did not go real well but he decides that I need a DaT Scan.  Got that scheduled for the 15th of November and my next appointment with him is in January 2016.  Not one word from the VA with regards to the test results.  So on January 1st I attempt to find the test results in what the call MyHealthVet, where information is stored.  I find the test results and they read "Diminished uptake in the head of the caudate nucleus bilaterally.  Reduced uptake in the putamen bilaterally worse in the right.  Impression Reduced dopamine transporter uptake in the head of the caudate neclesus and putamen compatible with Parkinson's.
 
Now in talking with several trusted healthcare professionals they stated a courtesy phone call should have been made.  So now my question is do I try to find a Neurologist outside of the VA under my Medicare?  My gut tells me to keep the appointment with the VA for January 19th and hear what he has to say.
 
So I felt it was time to come back to writing and getting things off my chest to the people who suffer similar problems.  Thank you for allowing me to come back and getting this stuff out.  

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#76 PatriotM

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Posted 04 January 2016 - 07:43 AM

Unfortunately, our government, including the VA, is full of incompetent idiots.  It is a national disgrace that our veterans are treated this way.  Having said that, I would definitely keep your January 19th appointment and get their opinion of your test results.  While there, I would get a copy of all of your records and then find a good MDS in the private sector. 


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Diagnosed 9/2013

Not taking any PD meds (stopped taking Mirapex due to fatigue)

Using exercise to battle PD

Walk minimum of 12,000 steps a day which improves rigidity,balance, etc (everything but tremor)


#77 wifeofPWPD

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Posted 04 January 2016 - 09:59 AM

I agree with Patriot. The way you are being treated (or not treated) is a disgrace. Keep the appointment. I am so sorry for all that you have gone through and continue to go through. I wish you the best! I hope your next appointment exceeds your expectations.


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#78 Jaxs1949

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Posted 04 January 2016 - 12:36 PM

Good Morning, thank you PatriotM and wifeofPWPD for your support!  I will keep the group posted once I have appointment.

 

I have to admit that writing again felt good.  The hands still shake and tremble but I got through it.

 

Anything you want to share about your cases would be appreciated.



#79 TexasTom

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Posted 12 January 2016 - 01:31 PM

Hi Jaxs -- Thank You for the update.

 

It is critical we are our own advocate.  

 

I will print out some 8 x 11 paper with "Hi my name is Tom, it is critical I have my Parkinson's meds on time, every time.... "   (Straight from the awareincare.org kit).  For anyone who doesn't have that, I highly recommend getting it!


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#80 Jaxs1949

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Posted 13 January 2016 - 05:40 PM

Hey Texas Tom, thanks for the kind words.  I agree about the advocacy.  I had a great appointment yesterday with my psychiatrist and we discussed the need to speak for ourselves.  I told her that after 21 years in the Air Force we learned "if it ain't broke, don't fix it."  I have accepted my new life as the new norm, I am not broke, I love sunsets and sunrises and my grandchildren etc.  No more medications!  

 

Since my post on January 3rd got put in the hospital again for renal failure.  The same team of outstanding Doc's and nurses that I had before did an amazing job from keeping me off the kidney machine.  Agent Orange the gift that keeps on giving.  Told psychiatrist about not even getting my insulin.  Then they wonder why my blood sugars are out of whack.  I told her about not knowing what my test results were from Neurology.  I meet with him next week.  

 

My awareincare kit is always with me, but nurses and doc's could care less until I speak up.

 

The work goes on, the cause endures, the hope still lives and the dreams shall never die. Edward Kennedy







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