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zeitgeist

Struggling a bit...

17 posts in this topic

I knew I'd seek out folks going through similar at some point - its how I'm (we're?) wired-, but I foolishly put it off because I had other issues to deal with so I pushed it down a bit,  Okay, I should avoid starting in the middle :)  Hello!  I was diagnosed with early onset PD last year at the age of forty in the midst of some other health struggles for my family (my darling wife and our sweet son) and some financial challenges.  I'd had what I assumed was an essential tremor (like many others, I'm sure :-P ), but when I started having trouble with dry eyes and speech volume/clarity, I went to see my fantastic GP/PCP and she referred me to neurology.  Got a great general neuro and a movement disorders specialist and after some diagnostic work (including the not-super-fun-for-claustrophobics MRI and SPECT / datSCAN) they figure I've pretty clearly got early onset PD.  I went on amantadine which may have helped some, but it is hard to be sure.  I tried ropinirole because at the time insurance said Neupro patches would be $100/month... had a lot of stomach trouble and some nausea on that and doc checked again and the Neupro was now an option.  We slowly ramped up the dosage as my symptoms never went away entirely, but we wanted to find a good balance.  As we raised the dosage it brought some pretty intense nausea which we tried to manage with diet (eating at specific times throughout the day seemed to help some) and tinctures as I have concerns about cardiotoxicity and prolactin elevation with the one PD approved nausea med I know of (domperidone).  With the higher dosing also came some tiredness/depression so I backed off, but the depression stuck around and more recently after some additional stressors (uncertainty at primary job, extra work at second, car accident) I've had some panic attacks even though we'd (had two earlier in the year at dosage change times, but wrote them off at the time as solely the dosage change while now I believe its also about not letting off steam/talking about things enough and being in a fairly long period of triage where I didn't deal with things head on. For the moment I'm doing a med reset/maybe change and huddle up with neuro/MDS/PCP to decide on a new plan.

 

The diagnosis has really brought mortality into focus in new ways for me that even my Dad's stroke and Lewy Body diagnosis didn't crystallize.  I have an amazing wife of ten years and two young children who are my world and it's become very clear that I need to talk this out more (will finally be seeking formal counseling, but taking this first step as I wanted to share with people without a filter who are going through it, too).  I want to come to grips with my diagnosis for them and for myself and move forward.  You all seem so lovely and supportive and I'm happy to bring fresh baked cookies (and I always have a good single malt on hand 8) since I saw Stump mention both of these things on another thread) if it helps!  Thanks for listening, new friends.  Sorry about all of the parentheticals; sometimes the thoughts come too quickly for proper organizational structure.  Lest you think I'm a big bag of complaints, I'm enjoying the extra exercise I've been getting and making time for guitar playing for the first time in years.  Trying to get past the panic episodes as we've a lovely vacation coming up that I'm not afraid to say we all very much deserve around here.

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Edited by zeitgeist

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Welcome! What Single Malts do prefer? Right now all I've got is Ardbeg Uigeadial. I prefer their Corryvryken bottling, but I'm not complaining. Good friend is the president of the LA Scotch Club, so he gets me some great samples on occasion.

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Welcome Zeitgeist, Love the screen name.

 

Thanks for the cookies. Glad to see you have an MDS and a good PCP.

 

Are you from the state?

 

Any questions feel free to ask. We are all on the journey together.

 

Blessings

Adam

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Welcome! What Single Malts do prefer? Right now all I've got is Ardbeg Uigeadial. I prefer their Corryvryken bottling, but I'm not complaining. Good friend is the president of the LA Scotch Club, so he gets me some great samples on occasion.

I like a fair few - The Macallan, Aberfeldy, Glenlivet Nadurra, Balvenie, Highland Park, Aberlour and some others.  I have a local distiller making a pretty fine American Single Malt here as well (Hewn Spirits Reclamattion).

 

Welcome Zeitgeist, Love the screen name.

 

Thanks for the cookies. Glad to see you have an MDS and a good PCP.

 

Are you from the state?

 

Any questions feel free to ask. We are all on the journey together.

 

Blessings

Adam

 

Hey Adam, thanks!   My PCP is a fantastic doc and all round great human being.  She's wonderful!  I'm in PA near to Jersey where I lived for years after coming East.

Edited by zeitgeist

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 I'd had what I assumed was an essential tremor (like many others, I'm sure :-P ), but when I started having trouble with dry eyes and speech volume/clarity, I went to see my fantastic GP/PCP and she referred me to neurology.

 

...I went on amantadine which may have helped some, but it is hard to be sure.  I tried ropinirole because at the time insurance said Neupro patches would be $100/month... had a lot of stomach trouble and some nausea on that and doc checked again and the Neupro was now an option.  We slowly ramped up the dosage as my symptoms never went away entirely, but we wanted to find a good balance.  As we raised the dosage it brought some pretty intense nausea which we tried to manage with diet (eating at specific times throughout the day seemed to help some) and tinctures as I have concerns about cardiotoxicity and prolactin elevation with the one PD approved nausea med I know of (domperidone).  With the higher dosing also came some tiredness/depression so I backed off, but the depression stuck around and more recently after some additional stressors (uncertainty at primary job, extra work at second, car accident) I've had some panic attacks even though we'd (had two earlier in the year at dosage change times, but wrote them off at the time as solely the dosage change...

 

Let's see.  Without PD drugs, you have a tremor, dry eyes, and speech volume.  With PD drugs, you have tiredness, depression, panic attacks, and intense nausea.  Does that make any sense?

 

Doctors are trained to prescribe drugs.  Doctors and drug interactions kill 783,000 people each year and are at least the third leading cause of death in the USA (quite likely the first).

 

 

 

 

Edited by PatriotM

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Let's see. Without PD drugs, you have a tremor, dry eyes, and speech volume. With PD drugs, you have tiredness, depression, panic attacks, and intense nausea. Does that make any sense?

 

Doctors are trained to prescribe drugs. Doctors and drug interactions kill 783,000 people each year and are at least the third leading cause of death in the USA (quite likely the first).

 

 

 

 

Without drugs I have pretty strong tremor, shuffling feet, stiffness, and had started to studder some. With Sinemet I have almost no tremor, no stiffness, and pretty much no other symptoms and have never had any side effects. Edited by swva
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swva,

 

You need to reformat your post.  The first two lines are your quote, not mine.

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Welcome Zeitgeist!

Glad you found the forum.  I'd like to add my 2 cents on PD.  It's a disease of the brain.  Depression and anxiety also originate from the brain.

 

Two things about that link between the brain and depression/anxiety are important.  First you've been hit with a Dx that is terrifying to you and your family, especially as you have young children.  This has turned your world upside down.  That certainly should cause ANYONE to be sad and anxious.  That is called 'situational depression,' and you have a right to feel it.  But remember, that takes energy to fight those feelings, so consider talking to the Neuro about that, he/she may have something to suggest. Secondly, PD can affect the areas in your brain that control depression and anxiety.  It is a brain disease.  An extremely mild anti-depressant has helped my DH quite a bit.  He also has a heart condition, so is on a beta-blocker, which also helps with anxiety. 

 

Good luck, I know you will find lots of support here.

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swva,

 

You need to reformat your post. The first two lines are your quote, not mine.

Hope I fixed it. My phone is doing strange things lately.

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Thank you!  This is helpful :)

Welcome Zeitgeist!

Glad you found the forum.  I'd like to add my 2 cents on PD.  It's a disease of the brain.  Depression and anxiety also originate from the brain.

 

Two things about that link between the brain and depression/anxiety are important.  First you've been hit with a Dx that is terrifying to you and your family, especially as you have young children.  This has turned your world upside down.  That certainly should cause ANYONE to be sad and anxious.  That is called 'situational depression,' and you have a right to feel it.  But remember, that takes energy to fight those feelings, so consider talking to the Neuro about that, he/she may have something to suggest. Secondly, PD can affect the areas in your brain that control depression and anxiety.  It is a brain disease.  An extremely mild anti-depressant has helped my DH quite a bit.  He also has a heart condition, so is on a beta-blocker, which also helps with anxiety. 

 

Good luck, I know you will find lots of support here.

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Welcome to the forum.  I am at least glad to hear you caught it at an early stage.  Neupro and ropinirole should be monitored closely for behavioral changes just in case. 

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Exercise is key! If your lovely wife likes to dance, I suggest ballroom dancing- work your way up to the Argentine Tango. My MDS did a study on the AT and PD. My husband & I quickly learned you don't start with the tango. We have been taking lessons for 2 years and we look quite impressive at the local wineries when we bust a move.(we never formally danced EVER) It also cracks up our teenage sons when we clear out the living room to practice. I honesty forget I have PD when we are dancing. It's one good thing that has come out of my PD. I've learned that life will be different but it can still be great!

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MurrayPD2...I just noticed you had listed spinal fusion. I had c5-6-7 as well. My PD was actually discovered by the Dr who was doing the nerve conduction test. He happened to be an MDS. He just casually said "I don't normally do this but I think you have PD".  So in a span of 3 months, I had surgery and a PD DX.  Lucky me!

Edited by LAD
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Welcome!  Here are a couple of things that help me come to grips with Parkinson's.  You may not find them comforting or helpful so please disregard if that is so.

The day after I received my diagnosis I reminded myself that I don't have anything that I didn't have the day before and the day before that,  I just didn't know what it was.  If I could handle yesterday then it is most likely I can handle today and tomorrow.

Don't cross that bridge before you come to it.  It is so easy to dwell on all the possible and often frightening things about this disease.  But, remember no one knows what tomorrow will bring.  Yes, I might develop a new symptom but I might also get in a car accident, get killed and consequently never develop any other symptoms.  There might also be new treatments.  Life is a crap shoot.  We just don't know what will happen.  We might want to plan for some of the possible negative things, but there is no point in dwelling on something that may not even happen.

Sometimes those around us are very concerned and mourn some of the losses they see in our health and wellbeing.  It is also tempting to feel sorry for ourselves and start thinking that no one else has problems.  No one gets through this life alive!  We all must face mortality.  Hubby, don't worry so much about me as I might not be the first one to go.  Let's make the most of today - no premature mourning, there is enough time to mourn tomorrow.

Start making a bucket list and fill it with both the bold and daring as well as the simple.  Go on that once in a lifetime trip but there is also a lot of satisfaction in some of the more simple things, such as attending a grandson's ballgame or attending a granddaughter's graduation.  It is good to reflect upon the number of things that have been checked off the list and contemplate new things to add.  In other words don't forget to keep living.

It is hard if not impossible to always feel positive - so don't try.  It's ok to take a break and vent, scream, cuss, have a good old tantrum and cry.  Just be sure not to hurt the innocent while indulging yourself.  Remember you are dealing with the loss of dopamine which not only affects our movement but emotions as well.  Feeling down is not a sign of weakness but a symptom of the disease itself.  See your doctor often and don't be afraid to be your own advocate or ask a loved one to assist in this regard.

Life goes on.  All we can really do is make the best with what we've got.       

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On ‎4‎/‎8‎/‎2017 at 9:26 PM, LAD said:

MurrayPD2...I just noticed you had listed spinal fusion. I had c5-6-7 as well. My PD was actually discovered by the Dr who was doing the nerve conduction test. He happened to be an MDS. He just casually said "I don't normally do this but I think you have PD".  So in a span of 3 months, I had surgery and a PD DX.  Lucky me!

Funny, I had 2-3 NCTs done during my complications.  There was mention of odd results, but not one mentioned PD.  I am glad your doctor was helpful for you.  I just wish mine were.

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Now, don't make fun, but like all folks within the AARP age limit, we get in the mail the monthly AARP magazine. This month's has a really nice article about Michael J Fox, with pictures and lots of quotes. I don't ever read AARP, but I wanted to see what Fox had to say. It is a great article. And it contains his 4 or 5 rules, can't recall exact number. When I read them, he is right as rain. The whole article was spot on, worth the read, for new and old timers with PD.

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