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Irish620

Recently diagnosed

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Irish620    2

I was recently diagnosed - October 13th to be exact - so I'm new to the forum.  A little about me and what led up to the diagnosis.  I'm a 54 yo women living in the Midwest.  2016 is a year that I am glad to put in the books.  In April I was laid off from my job at a company I had worked for 13 years.  Not the worst thing in the world but difficult to find a corporate job at my age.  Having time off provided me time to travel back East and help transition my father to a memory care unit of a nursing home. He declined quickly and passed away at the age of 80 after 4 months in the facility.  My father had been diagnosed with PD at the age of 48 and had PD Dementia at the end.  At the funeral a family member casually mentioned to my husband that they had noticed a twitching in my index finger.  A week or so after the funeral my husband asked me if I had noticed, which I had not, and chalked it up to stress, lack of sleep and/or too much caffeine.  It persisted and my husband and I both noticed it so I agreed to see a neurologist - mainly to appease my hubby.  My husband is on staff at a major medical center with one of the best Movement Disorder Centers in the country so my appointment was with a MDS.  After the initial neurological exam (which reminded me of a DUI test) the doctor informed me that I most likely had PD.  While the MDS seemed fairly certain of the diagnosis they still wanted to run blood work (to eliminate thyroid issues), an MRI and a DATscan.  Like most of you my DATscan came back abnormal suggesting possible Parkinsonian syndrome. We were shocked and a bit overwhelmed at first - to get this diagnosis 6 weeks after burying my father after his 32 year battle with the disease seemed the ultimate irony.  Even though my father had PD I was never worried about it as no one else in his family had PD or any neurological disease.  No genetic testing was done on my dad as it was assumed the disease was idiopathic.  

 

The good news is that the PD was caught very very early and for the time being is very very mild - just  a slight tremor in my hand and right foot.  The only script I have at the moment is propranolol.  Since my diagnosis I have been religious about exercising as that is in my control.  I'm not sure if it is better or worse having already witnessed someone I love battle this disease but I remind my family that this is my PD not my father's.

 

My husband and family have been great,  I feel the most for my husband and potentially what is in store for him and for my mother who not only was a caregiver for 32 years but now has the pain of seeing her child battle PD.  At first I only wanted to tell family but my husband nudged me along to tell friends - after all there is no shame in it.  I am drawing the line at work friends as I am still actively seeking employment and do not think most people understand PD.  I am glad I shared the news, I don't want pity or sympathy but rather support and greater understanding for PD.  

 

So now I am a member of a club I never wanted to join and now that I am in it don't want any more members. I have joined a Young Onset PD group and my first meeting is next month.  I am not bitter or angry as that does me no good.  I accept this diagnosis but that does not mean I am resigned to it.  My father until his last breath believed in a cure.  I am my fathers daughter and am hopeful for a breakthrough in this battle. 

 

Thanks for all of your posts - I've read many of them.  It is a comfort to know I am part of a larger community.

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Lu States    83

sorry to hear, but this place is a great comfort.     hope it takes a very long time to really manifest itself in you.   i was diagnosed at the age of 63, but had my tremor (  dr. said it was just a benign tremor, and not to worry ) for over 10 years before i had any other symptoms.........or at least ones i could put together as being " something " needing checked out.    i have been told mine is not going to progress rapidly......and so far that is true.   

 

for me, when things became really " bad ", sinemet was prescribed, and took most of the obvious signs away.   the ones remaining are annoying, but not debilitating.   hope your progression is nice and slow like mine !   

 

sorry you are here, but it is a great place, and comforting to find others that understand the quirks.     best of luck, and welcome !     lu

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stump    452

So now I am a member of a club I never wanted to join and now that I am in it don't want any more members. 

 

Ain't that the truth.

 

Anyway, welcome and kindly note the new person brings the cookies and drinks.  I like double chocolate cookies, and a nice, peaty Single Malt Scotch.

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papa57    60

Welcome. Hope you find some comfort here. This is one mysterious disease as it affects everyone a bit differently. Sometimes I think we experience ups and downs as any normally healthy person…..just sometimes emotions, physical challenges just happen to be magnified a bit. For my situation, sinemet and exercise are core to managing symptoms. Family support helps……I just have difficulty leaning on them as I know they worry some.

 

As you mention, my concern is for my spouse. Just need to live in the moment, and as others have expressed on the forum….be thankful for each day.

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Lonnise    60

Welcome Irish620

 

Although no one "wants" to join the club, we're all glad it's here.  My DH (dear husband) was diagnosed (at age 56) in July and it threw us for a loop, but as all the great members here reinforce, PD is just another part off our lives, it doesn't define us; nor does it have to be the dominant or driving force once we get more educated and settled about it.

 

As far as "worrying" about your Husband and Mother trust me that's very normal and then hear this loud and clear - "stop it".  All of us worrying about each other does nothing but feed the anxiety and depression wolves that exist in all of us and as the wise American Indian folklore advises - the "wolf that wins" is the one we feed.

 

As the spouse my "anxiety" is not knowing what to do to truly be helpful and feeling that "just being supportive" isn't enough.  My 92-year-old mother's anxiety is not being able to "help her kids".  My DH's "anxiety" is being too burdensome.  Well we've learned that the key is very blunt and open communication between us and with our trusted advisors (medical, financial, etc.)  None of us is helpless ever.  We all have critical abilities and energies to offer each situation and we must appreciate and focus on being happily interdependent which keeps us feeling valuable and purposeful.  We are committed to living as a happily interdependent family and DH and I are focusing on the next 30 years of meaningful partnership as we travel the many paths this life's journey presents.

 

I learned a new word this holiday season.  "Smultronstalle" (umlaut over the a).  It's Swedish and means a "a special place discovered, treasured, returned to for solace and relaxation; personal idyll free from stress and sadness".   May you know and enjoy your Smultronstalle throughout the rest of a very long and satisfying journey through life.

 

Welcome aboard.  I look forward to sharing with you.

 

Peace

 

LHG

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Daisygirl    2

Irish- so much of your story is similar to mine. I am a 54 year old woman living in New Jersey and last year I also lost my job when my company outsourced my department. I was employed there for almost 17 years. I was lucky enough to find a new job within a few months. But while I was out of work, and under stress dealing with all that being unemployed brings, I noticed tremors of my right hand and foot and was diagnosed by a MDS in September as a very mild and very early case of PD. I also am on propanolol to help with the tremors. I also go to the gym about 4 times a week and try to exercise at home on other days.

No one else in my family has ever been diagnosed with PD. I am sorry for the loss of your Dad. But you are right. This is your disease and many advancements have been made and things like exercising and eating healthy will keep us strong and hopefully keep the PD at bay.

My husband and family are also very supportive. I feel, though, that we are getting "cheated". My husband and I were planning for and looking forward to our retirement. Now, our retirement may be a bit different than what we pictured. But everything happens for a reason. Good luck to you and welcome to the club.

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Gardener    193

Hello Irish620,

I'm sorry that you are here but now that you are please contribute often.  Having watched your father fight the PD battle for so long I'm sure that you have a good grasp of the disease and can help a lot of people here.  I was about your age when dx and six years later still managing well on medication.  I don't hold down a job and for the most part stay at home so my stress level is very low and I think that has helped me more than anything else I'm doing.  As my name suggests, I'm passionate about gardening but in the winter months I struggle to keep moving.   All the best, Gardener

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Lonnise    60

My husband and I were planning for and looking forward to our retirement. Now, our retirement may be a bit different than what we pictured. But everything happens for a reason. Good luck to you and welcome to the club.

Daisygirl:

I hear you.  My DH and I have also been planning for and looking forward to retirement and travel etc. and we hadn't expected to have to plan for managing PD as part of it, but also as you say, everything happens "for a reason" (or at least it's easier for us to accept if we can link "reasons" to it) so I am trying to accept that this is nature's way of telling us to SLOW DOWN and enjoy the little miracles of each day including the many days we plan to spend enjoying retirement.  Good fortune throughout your journey.

LHG

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Irish620    2

Thank you all for your kind words and support.  It really helps to have a community of people who are fighting this battle with you and we have much to learn form each other.  My father's PD progressed slowly so I am hopeful that mine will be the same.  

Stump - I like the single malt but a more of a bourbon gal myself

Lu - it is nice to have a place where people understand the quirks associated with the disease.  I am just starting to link other non-motor symptoms with the PD - never put it together before just stalked it up to aging!

LHG - wise words, all this worrying about each other only feeds the wolf

Gardener - thanks for   your kind words, I agree stress is a real factor for me with my PD symptoms

DaisyGirl - wow, we are very similar.  You are formNJ and I grew up in suburban Philadelphia!

Papa - exercise is key for me not only to manage the motor symptoms but for my mental well being as well

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MIMILASTER    79

Irish- so much of your story is similar to mine. I am a 54 year old woman living in New Jersey and last year I also lost my job when my company outsourced my department. I was employed there for almost 17 years. I was lucky enough to find a new job within a few months. But while I was out of work, and under stress dealing with all that being unemployed brings, I noticed tremors of my right hand and foot and was diagnosed by a MDS in September as a very mild and very early case of PD. I also am on propanolol to help with the tremors. I also go to the gym about 4 times a week and try to exercise at home on other days.

No one else in my family has ever been diagnosed with PD. I am sorry for the loss of your Dad. But you are right. This is your disease and many advancements have been made and things like exercising and eating healthy will keep us strong and hopefully keep the PD at bay.

My husband and family are also very supportive. I feel, though, that we are getting "cheated". My husband and I were planning for and looking forward to our retirement. Now, our retirement may be a bit different than what we pictured. But everything happens for a reason. Good luck to you and welcome to the club.

 

Just in case you did not see, Dr Okun answered a question from a forum member in Ask the Doctor  as follows =

 

" In my personal experience propranolol is not a good tremor medication for PD but works for mild essential tremor.  It can help with anxiety and also as an aid to help with pubic speaking.  I have had an occasional patient who says it helps with PD tremor.  Watch out for low heart rate, depressive symptoms, and if you have breathing issues."

 

I thought you might want to know ..

 

Regards,

 

Mireille

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LAD    202

You are correct that this is your PD not your father's. We know so much more now. Keep exercising- it is your best medicine!!

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