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Just another day at the office - Denial

denial newly diagnosed newbie just diagnosed YOPD

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#1 Pdude

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Posted 12 June 2014 - 10:04 AM

So two days ago when diagnosed - and after a two year period of observing myself having issues (and the occasional doctor visit and a couple of rheumatologists visits to rule out arthritic conditions), I had my answer.  So what did I do?  Cry? No. Did I celebrate that I had an answer and that I wasn't some crazy stiff and shaky hypochondriac?  No.  I did what many of you did.  I went back to work the very day of my appointment.  Kind of interesting that I am a psychotherapist.  I did groups and individual sessions with people who are depressed - many of whom live in an affluent area (Johnson County, Kansas).  Did my empathy suffer?  No.  Not a single thought such as "You think you have problems because you are not sure why you are depressed and can't decide between the new Lexus of the Land Rover?"  Nope.  I still felt compassion and upliftingly directed them to be mindful of their thoughts and feelings and engage in healthy behaviors.  

 

I went home, told the wife.  My 17 year old daughter was concerned.  My 12 year old son (who has mild Asperger's) asked me if I was going to die.  I told him that I would be fine, maybe just struggle more with some tasks.  I didn't tell my 21 year old - that lives out of the home with his new family and their two new babies.  I didn't want him to know yet.  My wife said "I just can't picture you being disabled some day".  We ate dinner, watched TV and I woke up the next morning and wolfed down an Azilect (and regretted it too because I have gluten intolerance and my choices of food are limited anyway - now I have to worry about all sorts of MAO interactions). 

 

After all the "Parkinson's for Dummies" book said that it will not kill you and that there is probably a cure around the corner.  Just another day at the office, right folks? That was the day before yesterday.  

 

And then yesterday, I decided to leave work on a short walk.  I hobbled across a busy intersection and almost slipped climbing a grassy slick embankment.  I made it to a coffee shop and reached in my wallet to grab my debit card - which somehow decided to elude my grip and sail to the floor.  I picked it up and then reached for the piping hot coffee.  Now I have to be extra careful.  I managed to juggle it to a table and sat down.  Then it hit.  Sadness.  Was it the new medicine - or was it ... oh, crap "I have Parkinson's - my life will be different."  I am technologically gifted, so I therapeutically stayed up late and made my own little Pdude website (despite problems typing) and felt almost a sense of serenity.  Thanks for listening.  

 

 


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#2 alanjaso3

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Posted 12 June 2014 - 11:31 AM

It is a big thing to accept and takes time.  My wife has a mild case of aspergers as well as my brother-in-law and father-in law.  So I understand why your young son is asking.  It sounds like you have a good support system and that is what helps the most.  You will get a lot of great information here.   


38 yrs old On Sinemet 25/100 4 times a day.  Officially diagnosed with Datscan 12/31/13 showing Abnormal Type 2.  I am also type1 Diabetic, Diagnosed with Major Depression since my early 20s, Have a 4mm aneurysm in my left internal Carotid artery. 


#3 old+slow

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Posted 12 June 2014 - 11:36 AM

Pdude,

I'm somewhat new to all this myself. Speaking only for myself, I was actually happy to finally know what was wrong with me. It really didn't bother me when I was told. I just turned 60 but never thought of myself as old till recently. Along with the PD, I also recently had a heart attack which did permanent damage to my heart. I worry more about that than I do having PD.

 

Once you get the right dose of med's and your mind+body get used to it, it does get much better. I was like you and couldn't even hold a cup of coffee in my rt hand. After being on Sinemet for the last 8 months, my tremors are very minimal and sometimes not at all. I do still have some of the other gifts that Mr PD gives us such as weak leg, mussel cramping, dizzy spells, walking issues ect. But nothing I can't deal with at this point, and not everyday. I'm just happy that my tremors are minimal now, my speach is still strong, and I have more good days than bad.

 

I know it's news nobody wants to get, but try to overcome it by counting the blessings you do have. There are many people out there who are much worse off than we are. Be thankful that we can learn to live with this. You have a family who will support and stand behind you. Some are not so lucky.

 

I'm a glass is half full kind of guy, and find it goes a long way ! 


So what were we talking about?


#4 Pdude

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Posted 12 June 2014 - 02:44 PM

Thank you both for the encouraging support.  I know this will take time to get used to and that acceptance is a process. 


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#5 old+slow

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Posted 12 June 2014 - 05:52 PM

Acceptance is the magic word here. You seem well educated and all I can suggest is that you brush up on everything you can about having PD. It helped me to realize that having PD is not a death sentence, nor the end of the world. This in turn helped me to accept the fact that I can handle this. In my case I think it effected the people around me more than it did me.

 

Once I educated my family on PD they now support me and fully understand I have good days and bad days. It's the people I like to call outsiders who don't understand. They see me on a good day and to them I appear fine on the outside. Education is everything, and once you educate them they have a better understanding of the challanges we face each day.

My problem is I get tired of trying to explain it to everyone lol

 

It's none of my business how you handle this, but I think sitting down with your family and having an open discussion would be a great start. But if things go south, you didn't hear it from me lol ......  just kidding


So what were we talking about?


#6 #Lifechanging

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Posted 13 June 2014 - 09:11 AM

PDude,

 

     We are in the same situation.  I was diagnosed on Monday, 6/2 and went to work after the appointment.  I was fine that day (denial) but it hit me real hard the next day.  For days after that I could not eat or sleep and every little thing set me off in a fit of panic.

 

     By Friday I was so strung out that I had a panic attack and had to leave work.  I rested that afternoon and went to a friend's house that night where they made sure I ate and we talked about normal things.

 

     Fortunately that broke me out of my slump and by Monday I was ready to go back to work with my old attitude.  Yes, I still think about my issue daily but not ALL the time.  It is usually when something happens like pressing the wrong key on the keyboard or feeling a little tightness in my hand/arm.  I still get mini anxiety issues once in a while but plan on attending an anxiety support group to help deal with them because I find myself getting easily worked up and yelling at my daughters when I really shouldn't be.

 

     So, I went to my first bikram yoga class last night and that was when I really discovered how tight my right side was compared to my left.  I left class thinking I couldn't do it anymore but now this morning I am ready to go back again next week.

 

      Not really sure where I am going here excpet maybe to just say that there are going to be ups and downs but you will get through them and start to have more and more ups.  Just stay focused and do the best you can to hold progression off as long as possible.  I used to either not eat until dinner time or pick up fast food durng lunch at work.  Now I have a bowl of cherry tomatoes and a cup of almonds at my desk.  Yesterday it was strawberries. 

 

     Stay active, healthy, and positive.


Dx'd 6/2/14 @ 43. Physical symptoms 2 years prior.

 

Not taking meds at this time.

 

Symptoms: rt arm tremor, rt leg tremor when stressed, APATHY, general stiffness in morning/after sitting for extended periods, handwriting issues, minor rt hand/foot rigidity


#7 Pdude

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Posted 13 June 2014 - 11:37 AM

Thanks #LifeChanging.  Tomatoes, almonds and strawberries sounds good right now.  


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#8 Keeper

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Posted 08 July 2014 - 10:26 PM

Hi Pdude! 

 

I hear there's a good young onset group in KC.  I've not gone... it's a long ways from Emporia to drive on a weeknight.  I feel so very alone here though because the only people with Parkinson's are 100 years old.  I may break down and drive up some evening this summer since the days are longer.  Sometimes I work up towards Paola.  Maybe I can detour on my way home for a meeting.  They look like nice people.

 

There's a one day "conference" in August that you may want to go to in KC too.  I went last year after my diagnosis... it's a bit disconcerting when the vendors keep asking who I know with Parkinson's... I say "me", and they look like I'm kidding...  There was good information though.  It influenced my decision to leave my general Neurologist and sign up for the MDS at KU Med once my tremors broke through the Azilect treatment this spring.  I see him in October... 6 months before I could get in.  It also helped my husband to accept what was going on and what I needed to do BEFORE my symptoms get worse.  He's an ignore it and it won't come kind of a guy.  Not super helpful when you're trying to be proactive.   It was a scary step to admit that "I" was one of "them".  I license facilities for people with disabilities and always felt like I could advocate well because I too have a 15 year old son with high functioning Aspergers, and I knew how it felt to be in the world of disabilities working hard for your child. Now I really fit in,don't I...   

 

I have problems getting cash out of my wallet. Credit cards just zip through those machines fine if I only keep 1 in each slot!  My typing is suffering.  I type very fast (nearly 90wpm), but now my left hand and right hand are out of sync and I end up with garbage.  So, I slow down and correct a lot.  Just like my handwriting.  I go back and fix letters that I flattened out completely during note taking.  It looks like I'm doodling, but truly I'm trying to capture things before I forget what I wrote.

 

I knew what I had 2 years before I went for diagnosis.  My father, his brother, his sister, and my Mom's mom all had/have Parkinson's.  I didn't know I shouldn't have it in my 40's.  I decided to get diagnosed when it started impacting my ADLs.  I'd spill food, couldn't cook with my right hand, couldn't hold a glass.  I heard from people, "That's just what you want it to be..." until it was confirmed by a DAT scan at KU Med.  That slowed the naysayers down and allowed me to finally move on and deal.  I told my 15 year old I'd shake like Grandpa some day and he was okay with that.  He's caught more stuff as we've gone and seems to have gleaned that Mom will get much worse some day, but he'll be okay.

 

Yep... don't eat steak at Texas Roadhouse or eat the rolls.  I did that, and because of the Azilect my BP ran up.  I got dizzy in Sam's, sat at one of their BP machines in the pharmacy running it repeatedly and wouldn't leave until my BP went under 180/120. Scary.  I eat a little of what I shouldn't, and when I get a high BP buzz then a massive headache, I figure I deserve it.  I know it's bad, but I don't want to limit my life that much yet.  It's so hard to let go of normal.  Say, I'm having minor surgery on my foot (bone spur) later this month and have to stop taking my Azilect tomorrow so I can have anesthesia without stroking out.... benefit... I can eat what I want for the 2 weeks prior and 1 week after surgery!!!  If I can hit my mouth...  hmmm.... 

 

Another Azilect problem... the Psychiatrist I saw last month about my anxiety is struggling to find something I can take that won't interact.  She's scared to touch me. I think she is putting me off hoping I'll skip to a dopamine product and drop the Azilect.  Maybe that KU Dr. can help with that too?  Dunno. 

 

I read Parkinson's for Dummies too!  It didn't say anything I hadn't found out on the net, but it was nice to confirm that I did know stuff.  The devil you know and all that.

 

Well, I'm rambling.  Must be time for bed.  I only slept 4 hours last night. 



#9 Pdude

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Posted 13 July 2014 - 05:55 PM

Hi Pdude! 

 

I hear there's a good young onset group in KC.  I've not gone... it's a long ways from Emporia to drive on a weeknight.  I feel so very alone here though because the only people with Parkinson's are 100 years old.  I may break down and drive up some evening this summer since the days are longer.  Sometimes I work up towards Paola.  Maybe I can detour on my way home for a meeting.  They look like nice people....

 

Thanks for your comments Keeper!  I will look into the KC area support group for YOPD.  Hope you have been getting better sleep.  I have a sleep study this friday after I see my MDS (for the first time).  I am going to see about switching from the Azilect.  I think that I would rather function much better/have a better quality of life right now and just take my chances on long term dyskinesia.  I also get really bad bronchitis in the winter and almost need to have cold/cough medicines which I wouldn't be able to do if I stay on the Azilect. 


Edited by Pdude, 13 July 2014 - 05:56 PM.

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