My Dad was just diagnosed with Parkinson's

Hello!  Welcome to Caring.com's group!  I'm really glad you joined us.

Let me first say that I'm sorry you're dealing with a Parkinson's diagnosis for your dad.  Your attitude sounds great and I wish you the best in finding a treatment that works well for him.  Admittedly I don't know much about the disease and haven't had to cope with a family member's diagnosis.  I will tell you, though, that a friend of the family had a brain surgery several years ago and lives almost symptom-free now!  So keep your hopes high! 

Hi, my dad was diagnosed with Parkinson's around 15 years ago (at approximately age 60).  I'm sorry to hear about your dad's diagnosis.  At least you've identified the problem and can get started with treatment.  Everyone's situation with this disease is really different.  There are so many possible symptoms but everyone seems to experience a different combination, so you just have to take his situation as it comes.  The good news is that while they can't cure the underlying illness, there are many drugs available to help with the symptoms.  What we can't know is the speed of the progression of the disease.  Hopefully your dad has a good neurologist who's got a lot of experience dealing with this illness.  (If not, find one.)  In our case, my mom is the primary caregiver and I live in another state, so it's my mom who faces the decisions and I try to give her emotional support.  There are Parkinson's support groups out there and you might want to try to find one in your community.  I wish you and your family all the best.

So nice to hear from someone else - I have yet to join a group or talk about this with anyone who has experience.  Thanks for your response.

Dad has been on medication for a week and he doesn't feel any changes, but we all noticed a marked change in his ability to move and dance(!) even.  He's like he was a year ago.

The bad news - I guess he has Parkinson's - it's official.  Now we need to find a good neurologist - at our local Kaiser.  So far, they haven't offered one up.    I guess I'll have to push for one. Thanks again for your support.

Dear Anonymous,

I have waited until today to reply, because we received the "defintely probable" diagnosis from the general practitioner.  Confirmation from the neurologist the end of the month is a reasonable certainty.

I could write a heartbreaking book about the last 20 or so years as my mother has slowly "left us," until five years ago, when my father died a heart broken man, because he had failed in his search to find his lost beloved.

She remained reclusive and distant in a small community with few services until a series of fortuitous disasters finally landed her in the safety net of superb health care here in my metropolitan area, under my care.   Had it not been for alert medical professionals, and some honest-to-goodness disasters that plugged us into "the system," the demon would never have been named.

How do I feel about the diagnosis?  Righteous.  Victorious.  Now I can grab the filthy beast by the throat and choke the life out of it and have my mother back for the sweet, sweet time I have left with her.  The 20 years she's been lost to me are the past.  My mother is mine again.  Soon she will be. Just because now the Demon has a name and it can't hide anymore.

Do not grieve what is.  Do not fear the future.  Do not brood, nor worry.  Rejoice that you are in your father's life and that the threads of love and family, caring, medical professionals and angels all have a hand in this.  You are not alone, and you are strong.  Celebrate your father's life and every moment you can touch is sweet face and say I love you.  Dance with him.

Barb L.

My Dad has advanced Parkinson's.  He's 91.  It started slowly about 15 or so years ago.  It's so hard watching your parents decline and not all Parkinson's patients will be the same.  Medicines don't seem to help anymore, even though he's still on them, plus other meds to help control the vivid dreams and calling out that goes with Parkinson's.  He does not have alzheimers, but the mind gets strange and Dad relives the past (alot of the army in WWII) and talks of catching the train.  Swallowing is difficult.  Choking, coughing and pneumonia are common, because they can't swallow and bits of food can go into the lungs. Water is especially hard to swallow and he's now on a soft diet.  Smoothies and ice cream are tolerated well, because they are thicker.  He's wheelchair bound, and spends alot of time sleeping.  He is in a nursing home now, because he's care got to be too much to handle as his body became weaker and more rigid.  I hope your Dad (or anyone) never gets to this point in the disease.

Diane

Erika, Barb L. and Diane, welcome to Caring's community.  I'm so sorry you're dealing with Parkinson's but I'm glad you found this discussion and shared your thoughts and experiences.  There's no telling how many others you've helped!  Thank you for posting and I hope to see you around more often! 

Here's the part about me (let's call me Carol)

It's been a little over 2 weeks now.  We've all been learning about parkinson's.  And as scary as it all is - somehow I DO want to know.  And I'm so thankful for you all sharing your experiences.  I can hope and be strong I guess..   Boy - what YOU are going through.

Dad seems allright but not great - shuffling, shaking in his hands but his mind is perfect and he seemed strong.  He wants to meet people with Parkinsor's. I know my dad, he wants to meet people and hear about a cure.  He's never really been sick in his life and he can't imagine (he's terrified) of having a disease with no cure.  I hate to see him dwell and  be afraid - but I know  that 's got to be natural and there's nothing I can do - I'm not him and can't advise.  A part of  me knows I just need to listen and let him tell me all his fears.  And then there's this screaming hope part - that wants to say - "you're healthy now - concentrate on that and hope and expect the disease to happen slowly.

Kaiser has yet to set him up with a neurologist, although they have not yet.  We're calling a Parkinson's clinic this week.  And looking into groups too. I fear meeting folks with Parkinson's wil make him VERY depressed - really. 

As I write this I suddenly realize you all are going through MUCH more serious moments in your life.  Keep writing - it sure helps me to write, maybe it will help you.

Your love to your parents is an inspiration.  My Grandma ALWAYS said (in regards to caring for her bed ridden husband for 12 years), it made me strong.  And boy did it - when I knew her (for the next 10 years of her life), she was the happiest person I know - she knew to appreciate every moment that was appreciate-able! 

Barbara - I read your post again - this can not be an easy moment in your life.  Your words are the best advice you should read them again: "Do not grieve what is.  Do not fear the future.  "Do not brood, nor worry.  Rejoice that you are in your mother's life and that the threads of love and family, caring, medical professionals and angels all have a hand in this.  You are not alone, and you are strong.  ... touch her sweet face and say I love you."

And my Grandma's words - "this will make us all strong and better people because of these natural experiences of love and life.."

Thinking of you all - and appreciating the sharing.

Carol, I'm so happy you came back to update us.  I'll be thinking about you and your dad. 

Needless to say, the days wearing on between preliminary diagnosis by the GP, and the date with the neurologist are undermining my bravery.  Everything I read (and I read too much) seems to make the drugs sound much worse than the disease.

My own talent for melodrama opens a well stocked Anxiety Closet every night before I go to sleep.  I can see visions of my spectral (or more likely angelic) father, who died swiftly and painlessly of leukemia five years ago, standing - waiting - protecting - alongside my mothers chair that she lives in, in her semi-petrified state.  I miss him so much, and then I start grieving for my mother's condition...and then I start thinking of the wreckless abuse and exposure to toxins that I subjected myself to...the whole maudlin tragedy is starting to make me crumble.

It's the waiting for the neurologist's appointment - that, and wondering if it's right that I should make her endure the drugs.  I am so scared, for her and for myself.

"Have you heard about the constipated mathematician?  He worked it out with a pencil."  This silly joke has become a connection between my mother and me.  All these trivial crises that we endure and conquer on a day to day basis...we are a team, and we worked it out with a pencil.  The line brings a sort of childish amusement to my mother, but she clings to the silly little punch line.  I can't read her emotions.  I don't know if she is sad, or scared.  I don't know how aware she is.  Judging by what I read, she is about at Stage Four - yes, undiagnosed. 

Between us, we'll work it out with a pencil, but in real life, I don't know if I'll ever be able to deal with the reality of how the last 15 years of this life, this personality, have been wiped out.  Last night I had to fall asleep on the couch so I could be in a room with the lights on and my husband nearby, watching TV.  Trying to avoid the Anxiety Closet.

If only someone could just tell me it's going to be okay, someone I could believe.  Maybe I should ask my dad.

Barb L.

Dear Barb,

I know you posted a long time ago, but hope you see this.

First of all, I want to say what a wonderful writer you are.  I realize this has nothing to do with your concerns about your mother, but thank you for sharing your eloquence.

Your anxiety seems like a completely understandable reaction to the uncertainty, the difficulty deciding about meds, the grief, all of it.  However I also worry about how the anxiety is affecting you.

When I saw my primary care phsyician this summer for my annual check-up, she asked about stress and I burst into tears and told her about caring for my father, whose diagnosis recently changed to Lewy Body Dementia (which has some overlap with Parkinson's).  She told me that the stress and anxiety were going to continue, but that my body could not continue to cope if I did not have some help with the anxiety.  She prescribed Ativan and while at first I was horrified at the thought that someone would think would need medicine just to function, I have since felt incredibly grateful to her.  My situation is different from yours, but what I needed was a fast acting anti-anxiety med that could help me get better control of my physiological responses which sometimes escalate beyond my ability to reason with myself, meditate, or otherwise relax.  I don't take it often, just when I know the anxiety is going to get so bad it will actually undermine my ability to be with my father the way I want to. 

To do what you are doing not only takes commitment and caring, it also takes self care.  And sometimes one part of that self care (in addition to venting, exercising, eating right, going to support group, getting assistance) is taking medication.  Especially if you are not sleeping well - you can't help your mom if the Anxiety Closet prevents you from getting restorative rest. 

Okay, I'll get off my soapbox here!  I can't promise it will all be okay, but send my caring thoughts to you.