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.

 My grandpa had Parkinson's, my uncle had Parkinson's, my great aunt had Parkinson's, and my Dad has been fighting it for 10 years now.  I have heard it's not hereditary.  Is it?                                           I feel my Dad is in the advanced stages now.  Just 2 weeks ago my poor Mother had to call an ambulance to come and get him.  He was not making sense, getting paranoid, thinking she was trying to poison him, when the only thing she was doing was giving him his meds.  It's just awful.  My sisters and I live out of state.  It is hard for us to help my Mom.  My Mom brought him home today, after a couple weeks in the hospital and rehab center.  My dear Mom thought that maybe if he came home and was in his own surroundings his mind would come back.  It's a sad situation.  He can't do anything for himself anymore.  She has to shave him and brush his teeth among other things.  I really think he needs to be in a nursing home, but my Mom is a fighter and even though she is so weak and frail (she's 71 years old), she keeps trying to keep him at home.  We will see what happens at home.  I pray that no one else has to watch their family members go thru this.  It's an awful disease that can last for years and years.

We just recently lost my Dad to Parkinson's.  He suffered so much.  The mind does come and go, mostly go, and they  see things also. It's going to get worse.   Even though nursing homes are not the place we want to end up, it's the best place for your Dad.  My Mom thought she could care for my Dad too, but as she got weaker she couldn't do it and when Dad fell EMT's had to be called to pick him up.  Mom started getting mad at him also.  I've heard Parkinson's is not hereditary, but I think it is.  My Dad's brother also had it and I know a woman and her brother had it.  We did not live close to my parents, none of us did, but my parents made the move to be around someone who could help.  It's so hard trying to be everything to everybody.

We just recently lost my Dad to Parkinson's.  He suffered so much.  The mind does come and go, mostly go, and they  see things also. It's going to get worse.   Even though nursing homes are not the place we want to end up, it's the best place for your Dad.  My Mom thought she could care for my Dad too, but as she got weaker she couldn't do it and when Dad fell EMT's had to be called to pick him up.  Mom started getting mad at him also.  I've heard Parkinson's is not hereditary, but I think it is.  My Dad's brother also had it and I know a woman and her brother had it.  We did not live close to my parents, none of us did, but my parents made the move to be around someone who could help.  It's so hard trying to be everything to everybody.

my mom has parkinson's and has had a couple of strokes ( 1/09 was two years since the strokes -and the onset of parkinson's - she had recovered her speech and her ability to walk within the first year and now is in decline-more so I think because of the parkinsons. it took doctors along time to diagnose her - her blood pressure was out of control , her vision was affected by bleeds ,she had an unstable gait  with tremor, memory impairment (mostly short term) lost  her appetite, her taste change ( everything is too sweet) lost nearly 30 pounds, urinary incontinance and alot of body pain . we got her blood pressure stable, had laser correction and injectables to clear up her eyes, phyical therapy ( many times 4 to6 week intervals) she is on carb levo -dopa ,blood pressure, urinary, nsaid medication   now I am seeing her go into another stage - there are apparently many stages and no specific order or telling whats next - a very undifined disease - i live with her full time  full time and take take of her - it is most definite now that her vision is fine as of yesterday's checkup - but she can hardly see because of the neuro impairment -the same for her ability to walk - the brain does not transmit what she wants to do properly - she has become a shell of herself a once very independent out going woman - she is now really frail and in the last few weeks I notice a big mental change - she is affected emotional more easily - cannot be left alone for any period of time( megoing to work now is bothering her) this is such a strange condition not alot people are very knowledgable about it -I just hope at 83 she does not spend many years  because quality of life is a real issue and there isn't much that I can provide her to make it better.we just wait and see what each day brings us and hope for the best

It gets to the point that we know death is the best thing.  It's not easy and it's not what we want, but there is no quality of life and swallowing stops (which means you can't eat/drink).   Hospice was a great help to us.

My Mom was diagnosed with Parkinsons in 2003.  She watched her sister die of the disease.  My Aunt lived 15 years after the diagnosis.  She gradually got weaker each year until the last year of her life  was spent in bed and she was fed via tubes.  I'm watching my Mom, who is now 85, decline at a much quicker rate.  She has dementia, urinary incontinence, hypertension, hyperthyroidism and more.  We've gone through the paranoia and hallucination stages.  Her body does not always process what her mind is "telling" her to do.  As a result, sometimes she doesn't know how to eat, go to the bathroom, or walk.  She now sleeps most of the day in her chair.  She is in an Assisted Living place with my Dad who is 87.  They have been married for 64 years.  While it has been hard on me to watch the decline and figure out her medical needs, my Dad has lost his best friend and life partner.  It is heartbreaking to watch. 

I really do appreciate  this site - I learn something different every time I come here - - now I have a question - I was just informed yesterday that while my sister has mom at phsical therapy twice a week her blood pressure has been spiking some where around 175/65 during her workout - I noticed that when she returns home she is not only tired - she is visibly more unstable on her feet and  the arm tremor more pronounced I mention that I thought the therapy might be to much to her doctor and he told me to shush . I monitor her b.p.  at home and it is well controled around 140/80.. my sister called yesterday  to tell me they (where she goes for phyical therapy) decided she needs to be assessed at her primary care - apparently this has been going on for a few weeks and though I am her primary caregiver nobody called and my sister who normally doesn't help out was just informed within the last few days. I made an appointment for today -my Q's - has any one experienced this with physical therapy when the patient b.p. goes out of control ? see my attitude was keeping her walking  was important  but not to push her to the limit - I think my mom goes because she 's been told to by my less involved family   - Im angry and concerned because now they say its up to me how i would like to handle this do i think she should go back for her appointment on saturday? ( they are afraid they made the wrong decision) as always i the safety net - what the opinion any one seen tthis ?

 A MUST READ for anyone with, or who cares about someone with Parkinson's is "Living Well With Parkinson's Disease: What Your Doctor Doesn't Tell You That You Need To Know".  Here is the amazon link, but you can probably check it out at your library like I did.  Good luck!

http://www.amazon.com/Living-Well-Parkinsons-Disease-You-That/dp/0061173223 [amazon.com]

thankyou for the information about the book - I cannot wait to see it

My Grandmother just turned 87 this month...she was diagnosed with Parkinson's Disease several years ago, she has been on Carbidopa/Levidopa since then....she gets around pretty good, but she has boughts of dementia....she is incredibly health for her age. I am her Primary Caregiver, I make her meals, do all the cleaning, make sure she gets her meds and also makes sure she does not take off out the door, which she has done in the past and does not know where she is going or how to get back, so that was scary...but I am here 24/7 most of the time now....and my mom will come relieve me when I need it....all in all, she is doing rather well as long as her meds are taken and increased by her doctor when needed. I really do not have any questions, but I wanted to share my story. Sometimes it is difficult, because I remember my Grandma when I was a child growing up....well, some days it is harder than others.

We have gone through the paranoia years ago, but she takes a medication for that now, and so we have not seen any of that for years....she has a thyroid problem, which again she takes medication for....she has quite a few meds actually. I have been through it where she had no idea what was going on, in and out of the bathroom, up and down in her chair, would not eat.........but if she is getting the proper dosage of medication, she does really well....We have had to talk to her doctors about checking her blood levels and they ended up increasing her Thyroid medication....which stopped the confusion, this was quite some time ago we did this, and she eats incredibly well.

 To tigerlovinlady:

Will you please tell me what meds she was given for the paranoia?  My dad has been on Sinemet for a number of years now and has confusion issues.  They tried reducing the dose, but the tremors got worse.  Out of the 16 meds he is taking, thyroid meds aren't one of them.  Maybe they need to check that out again and see if there's been a change.  Thanks for your help.

My Mom was on Seroquel and became confused, then Zoloft and got seizures.  Had dementia which was never addressed. The neurologist tried Keppra and she had bad side effects, tremors.

SHe was diagnosed with Parkinsonism.  Now that she is off of most meds she is not having any seizures or tremors, I think it was drug reactions and he doesn't want to see her back now.

On EEg she had encephalopathy and it is better now since she is off meds. It was addressed as Parkinsonism.   What is encephalopathy, I read it is lack of oxygen to the brain or kidney disease or too much meds and poor nutrition.  I think the Dr. thought it is more of  a symptom than diagnosis.

i have taken care of a few people with this problem,everycase is diffrent,my late case was

a healthly man at 98,you should make sure he eating healthy and doing a little walking ect. i live in butler co pa if i can help please e-mail me thanks good luck have a great day. stay postive..

  earl