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MurrayPD2

For those of you working...

55 posts in this topic

Have you looked at the Patient Access Network?  There is financial help for PD patients having to spend $$$ on medicine.   http://www.panfoundation.org/index.php/en/

I got a card, for use at the pharmacy, to bill costs to them.

 

Fortunately, I was finally able to get VA medical support to reduce my costs, so I don't think I will need it this next fiscal year. 

It's not a struggle at the moment, but I know it will be in later years.

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Little humor and "where is Fred".

 

My Golden Retriever/Husky is dealing arthritis. She is 11, still active, but we have her on Novox which can be hard on the liver.

They switched around her medication, which is only available from a compounding pharmacy.  She is doing really well on it,

but I had to laugh when I realized it was Urdisol.   I told my wife if the dog didn't like, I'd try it. She looked mortified.

 

With my last two dogs I had to put down, my beloved Rotty/Retriever mix I probably waited too long. He was seven years old,

but cancer got him. With Chemo and surgery best odds were three months. I let him enjoy another month, but he said it was

time. :(

 

My border collie was with me for over 8 years. Adopted her at 7 years old, and she loved swimming. At night she would snif my

breath and go ballistic. It was obvious that she kept trying to tell me something, but no idea what it was. At 15.5 years old her

other hip gave out and it was time. Sweet dog, who passed in in November.  In December my biospy came back with Lung Cancer.

I always will wonder if that was her final message to have it checked. I did and we caught it early.

 

So after five years of not walking in the mornings (too unstable), meds are good and I'm back to walking.  Still amazed we have

four Marathon runners in my Rock Steady Boxing Class (two have had DBS, two have not). I might go for a 10K walk, but six miles

is fine by me!

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My border collie was with me for over 8 years. Adopted her at 7 years old, and she loved swimming. At night she would snif my

breath and go ballistic. It was obvious that she kept trying to tell me something, but no idea what it was. At 15.5 years old her

other hip gave out and it was time. Sweet dog, who passed in in November.  In December my biospy came back with Lung Cancer.

I always will wonder if that was her final message to have it checked. I did and we caught it early.

 

 Sorry to hear of the ones loved and lost.. That is amazing the dog could smell it in your breath!  That must mean there is a way to detect lung cancer by your breath. 

 

I am not running a marathon, ever.  I will eventually get back on my bike.  I have been feeling more energetic at work recently and stopped needing two  "non PD" meds.  Yet, I am finding I am having an allergy problem. Nothing stays the same with PD, does it? 

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 Sorry to hear of the ones loved and lost.. That is amazing the dog could smell it in your breath!  That must mean there is a way to detect lung cancer by your breath. 

 

I am not running a marathon, ever.  I will eventually get back on my bike.  I have been feeling more energetic at work recently and stopped needing two  "non PD" meds.  Yet, I am finding I am having an allergy problem. Nothing stays the same with PD, does it? 

 

Dogs can detect cancer with a very high accuracy.  There has been quite a few studies about this, and the dogs have been more accurate. http://www.cnn.com/2015/11/20/health/cancer-smelling-dogs/

 

We have a very large Golden Retriever Rescue group in Texas.  We have get togethers, which are always great fun.  One of the ladies noticed even the shyest dogs will walk past me, stop and turn and start sniffing. Ignore everyone else there, but would zero in on me. Next thing I knew I had dozens of Goldens stopping by to give me a huge hug (Golden's do not recognize personal space.  Not a clue why, but there was a "he does smell different" I swear I wasn't eating sardines for lunch.     After hearing about "The lady who can smell Parkinson's" I do believe their is a marker yet to be discovered.

Edited by TexasTom
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Dogs can detect cancer with a very high accuracy.  There has been quite a few studies about this, and the dogs have been more accurate. http://www.cnn.com/2015/11/20/health/cancer-smelling-dogs/

 

We have a very large Golden Retriever Rescue group in Texas.  We have get togethers, which are always great fun.  One of the ladies noticed even .     After hearing about "The lady who can smell Parkinson's" I do believe their is a marker yet to be discovered.

It sounds like I needed a Labrador test from the veterinarian center and not a lab test from the Veteran Center.

 

Maybe our dog at home just doesn't like me more, she just knows I am different.  She always wants to be near me more than any other family member.

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Years ago, a client of mine had a Rottweiler that kept nudging her left breast. A short time later, she was diagnosed with breast cancer. Another client who has seizures told me that her dog alerts her when she's about to have one.

I'll say it again: DOGS ARE AWESOME!!!

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Years ago, a client of mine had a Rottweiler that kept nudging her left breast. A short time later, she was diagnosed with breast cancer. Another client who has seizures told me that her dog alerts her when she's about to have one.

I'll say it again: DOGS ARE AWESOME!!!

Yes, they are.  8)  

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I so need a dog. Been over 2 years since we had to put Sarah, our 3/4 German Shepherd 1/4 Chow down.

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I so need a dog. Been over 2 years since we had to put Sarah, our 3/4 German Shepherd 1/4 Chow down.

At the 2 year mark after my dog Daniel died, whenever I thought I wanted a dog I eventually realized I just wanted Daniel back, but that was me.

 

It's been 7 years since he died and I still haven't gotten another dog, though if I had a yard I probably would have by now.

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We've got almost 5 acres, so plenty of room for a pooch.  

 

Yeah, it would be great to get Sarah back, but what I need is a dog.  Not that dog.  I have the memories of her, and that's enough for me with respect to her.

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Stump,

Let us know who picks you!  I honestly believe "we are our pets' pets".  Whenever I call the vet I announce myself as Ellington and D'Artagnan's human.  Best of luck.

 

LHG

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Really enjoyed reading this thread. I am 46 years old and into year 2 of my PD dx. I don't care that much for my job (don't hate it, don't love it) but the owners of the company I work for are amazing people and my immediate boss is awesome. They have embraced my PD Diagnosis and are even helping with a car show that me and my boss are putting together to raise money for the Lone Star Parkinson's Society. My boss really cares about his people on a personal level and that means a lot to me. As for working, I will keep working until I can't anymore. I have to. I started my 401K WAY to late in life but it's building steady now and my company matches my contributions. Free Money!!! Anyway, my meds work good for me 90% of the time so I function pretty good here at work. My wife has her LVN and is going to start heading toward her RN in the next year or so. She wants to have that so that she can make more money and if we have to go down to just her income we will be able to live good on that. I just take it a day, a month, a year at a time!

 

Dogs are awesome!

 

Darryn

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Really enjoyed reading this thread. I am 46 years old and into year 2 of my PD dx. I don't care that much for my job (don't hate it, don't love it) but the owners of the company I work for are amazing people and my immediate boss is awesome. They have embraced my PD Diagnosis and are even helping with a car show that me and my boss are putting together to raise money for the Lone Star Parkinson's Society. My boss really cares about his people on a personal level and that means a lot to me. As for working, I will keep working until I can't anymore. I have to. I started my 401K WAY to late in life but it's building steady now and my company matches my contributions. Free Money!!! Anyway, my meds work good for me 90% of the time so I function pretty good here at work. My wife has her LVN and is going to start heading toward her RN in the next year or so. She wants to have that so that she can make more money and if we have to go down to just her income we will be able to live good on that. I just take it a day, a month, a year at a time!

 

Dogs are awesome!

 

Darryn

I just talked my employer about needs.  It is not a dream job, but like you, they are very supportive.  They are working a plan with me today.  I didn't want to make a special case for me, but I do commute across the city and that makes longer hours, more stress, and difficult to drive when I don't sleep well.

 

It is nice to have considerate employers.   

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I have no idea what I will do about my job. Its super stressful and super long hours and I have to do alot of work while suffering from sleep deprivation. I'm 33 and have put about 6 years into EMS and I dont know where to go from here. My main goal is being able to provide for my family but I know that if this is what its looking like then I wont be able to do it anymore.

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I have no idea what I will do about my job. Its super stressful and super long hours and I have to do alot of work while suffering from sleep deprivation. I'm 33 and have put about 6 years into EMS and I dont know where to go from here. My main goal is being able to provide for my family but I know that if this is what its looking like then I wont be able to do it anymore.

Maybe you can get off the "front lines"  and do something closely related.  I am no career counselor, but I would assume you have people to network with.  One option that comes to my mind is a medical equipment technician/engineer.  You already know a lot about the equipment right?  Or, you could teach or train other EMS potentials. 

 

I don't think you have to "throw away" your hard work, just redirect your path to other options.

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Maybe you can get off the "front lines"  and do something closely related.  I am no career counselor, but I would assume you have people to network with.  One option that comes to my mind is a medical equipment technician/engineer.  You already know a lot about the equipment right?  Or, you could teach or train other EMS potentials. 

 

I don't think you have to "throw away" your hard work, just redirect your path to other options.

 

I gave this some thought and one of the things that came to mind was using a programming and coding certification to write and create programs for toughbooks and tablets that EMS uses.

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I gave this some thought and one of the things that came to mind was using a programming and coding certification to write and create programs for toughbooks and tablets that EMS uses.

Sounds like you are on to something there! 

 

I am finding a lot of value in changing my work schedule and priorities to lower the stress.  I know EMS is stressful!  In my experience, PD feeds off stress, so it can turn into a vicious cycle.

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I was in a meeting today and had a very demanding weekend.  Just before my next dose, I could really feel myself going "off'. My left face more stiff and head feeling more numb, brain fog setting in, and they were asking me questions about my own documents.  I was wearing off earlier than I have been, and it was wearing off fast.  Luckily, we had a lunch break soon and was able to rejuvenate myself.  I usually just have leg or arm symptoms of wearing before it gets serious. 

 

I wonder what this looks like to others.  I know it had to be noticeable.  They were asking me to clarify because my speech was getting low and I had trouble recalling some things.  It all ended well, but I often wonder what it looks like.  My wife can see it in my face when I am low.

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I was in a meeting today and had a very demanding weekend.  Just before my next dose, I could really feel myself going "off'. My left face more stiff and head feeling more numb, brain fog setting in, and they were asking me questions about my own documents.  I was wearing off earlier than I have been, and it was wearing off fast.  Luckily, we had a lunch break soon and was able to rejuvenate myself.  I usually just have leg or arm symptoms of wearing before it gets serious. 

 

I wonder what this looks like to others.  I know it had to be noticeable.  They were asking me to clarify because my speech was getting low and I had trouble recalling some things.  It all ended well, but I often wonder what it looks like.  My wife can see it in my face when I am low.

 

I doubt they noticed anything...People in general don't care that much about other people and are not that attentive to details...Or at least not as attentive as we think...Worst case scenario they thought you were tired or distracted or that you had one too many martinis... (OK, the last one might be worse than PD... :mrgreen: ).

 

PD starts to really show in public view only when it's fairly advanced...Until then, only those who knows us really well -close family, particularly spouses, and friends- can tell when we are "off"... 

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I agree with Christie.  You can be having the worst day and folks don't really notice.

 

Any fall out after, or did anyone say anything?

 

Hang in there -- and thanks for posting.  It helps to know others are dealing with work issues too.

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In my experience disabled or injured people notice immediately because they are more fine tuned. Just like i notice people with parkinsons on the street.

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I think it depends on how observant someone is or how much they care about other people. Some folks can be very self involved and wouldn't even notice if a zombie walks by them.

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Thanks for the feedback.  They probably didn't... Nobody says much.  I do wonder about Dyskinesia in the afternoon.  Of course, there is probably not a lot of difference between me and the software engineers hyped up on caffeine. :D

 

I do know that one coworker didn't say anything until related subject came up for some reason in casual conversation and I told him I have PD.  He said he did notice "ups and downs" and thought I was having bad back days or something.  Others that saw me before know that I could hardly walk and now I am walking all over the place.  They didn't understand what happened, and assumed when I disappeared for two months that I had a surgery or something to fix a back problem (because I stooped so much).  It was just that I am working with a newer team who doesn't know me too well and I was with our customer that day.

 

So, I shouldn't be worried about it, but I sometimes do anyway. 

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I know this thread is a little old, but I thought it was a proper place to post this.

 

I went to a meeting this morning, it is rainy, cool, and I was pretty tired this morning.  Fighting some slow traffic, I get to work a about 5 min late and walk in 10 min late to my meeting.  One person knows my history because I worked closely with him.  I noticed I catch the new team staring at me when I am not looking (that moment when you turn and they turn away).  Then, I leave the meeting and one person gives me a soft pat on the back.  It is not that I am paranoid (or am I :mrgreen: ), but the way it felt.

 

I get this feeling, while they were waiting for me, someone asked- "what's with those scabs on his head?" - and the story came out.  You see, I just had a DBS surgery and my sutures are healing slowly.  So, I am running around with these short racing stripes.  I started wearing a cap, but then forgot it one day.  Then, I just gave up covering the ugly scabs; which are almost gone. 

 

 

Anyway, it just felt a little strange, but I guess every time I work with a new group, it will have awkward moments.

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I have Scoliosis made worse now with lifting mom all day long.  I am very self conscious about what I wear trying to be careful and cover up as much as possible.  Still.... someone always notices and will ask if I'm ok.  I felt like the elephant man whenever that would come up but then I just let go.  Some people can have acne scars that are obvious or walk with a limp from an old injury.  Quit trying to hide what you can't change and just go on with your life.  Let's be honest. We will never be Cindy Crawford or Brad Pitt anyways.   It can only go downhill from here so get used to it.  :-P

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