'My Dad was just diagnosed with Parkinson's ' posted by NewMexicoTam @ {post.created_at.to_s(:post_time)}

NewMexicoTam — Sat, 03 Jul 2010 23:10:53 -0000

Joanna, I am so sorry to hear about your dad. My dad has PD too (I am 43 and he is now 71 - he's had it for at least 10 years). I will pray for you and your family. What I have learned over the years is that God doesn't make these things happen, but He is the only one who can make good things come from them. We might not always see how He is doing this, but He still is, for those that trust in Him. We live in a fallen evil world, that is life. Since my dad got PD, he has also had a stroke and now has severe dementia (the PD is the least of his troubles now). BUT, over the years, he went from being a selfish hermit to becoming more social and making deeper friendships, our relationship grew stronger and deeper, and having to cope with his problems has brought me into a much better relationship with God. Also, my dad became a Christian just this year. I know that would never have happened before. He was just too self-reliant and stubborn before his illnesses. God has also brought new special people into our lives through the caregiving process. These are just some of the gifts, and I am sure more will be revealed as time goes on.

The fact that you are on this website being only 12 tells me that you are more mature than your years. I know that your family is the center of your universe and you are very afraid and unsure. I encourage you to pray a lot and trust in the Lord and He will get you and your family through this.

Please look into finding a counselor or trusted adult you can vent and express your thoughts to. They can help you work through this each step of the way. It's not a bad thing to need and seek professional help. I've done it throughout my years and it's helped a lot. Your school (or church if you have one) can help you find someone too, if you need it. Also your family doctor.

I encourage you to read Michael J. Fox's book "Lucky Man". It will help you understand more about the disease and how to cope with it. You are a special girl and your dad is lucky to have you. Best of luck to you and him as you travel this new path together.

'My Dad was just diagnosed with Parkinson's ' posted by Joannagurl @ {post.created_at.to_s(:post_time)}

Joannagurl — Sat, 03 Jul 2010 00:57:11 -0000

I am twelve years old and my dad was just diagnosed with Parkinson's today. I am shocked and sad. My dad is 56 right now, and his hand is already very shaky. I don't know how my parents will cope. There are six of us children still in high school and middle school. Plus, how will we get through college if my dad can't work and my mom is taking care of him? I love my dad so much and it hurts to see him cry. He was crying when he came home and told us. I always thought bad things happened to bad people. My dad is so good and an awesome person. Why God? Why does HE have to get it? Why can't it be the serial killers and axe murderers who get it? I don't understand and I'm sad and angry. I have no idea what to do either. I'm a wreck.

'My Dad was just diagnosed with Parkinson's ' posted by Janice Bird @ {post.created_at.to_s(:post_time)}

Janice Bird — Tue, 16 Mar 2010 13:23:33 -0000

Dear megan16,

I'm sorry to hear about your Dad getting Parkinson's so early in life. However, to say that "when elderly people get it, it's not half as bad" is not true. Anyone who has a watched a loved one go through the phases of this disease-regardless of age-can attest to the toll it takes on them and their loved ones. Just because someone has the disease "longer" does not make it any less painful.

Also, to say "just be optimistic he doesn't have cancer or something terminal" is also incorrect and, frankly, insensitive. Parkinson's is a "terminal" disease from the standpoint that the person will have it until they die. The symptoms can be every bit as painful and debilitating as cancer.

I'm glad your experience has brought your family closer but please let other people experience their own emotions without judgement.

'My Dad was just diagnosed with Parkinson's ' posted by megan16 @ {post.created_at.to_s(:post_time)}

megan16 — Mon, 15 Mar 2010 02:25:18 -0000

well at least your dad got it later in life, that way there isnt much time for it to worsen. my dad got parksinson's when he was 31, he's had it for 10 years now and if anything, its brought our whole family closer to eachother and God. i consider parkinsons a blessing in my family. and recently my dad got DBS surgery, it can significantly improve many of the syptoms. and just be optimistic that he doesnt have cancer or somwething terminal. always look at the bright side of things. at least he didnt get it when he was at the prime of his life. and when elderly people get it, its not half as bad. so dont worry about it. just be there for him emotionaly, and make sure he takes his meds and as the disease progresses make sure the enviornment around him is safe too so he wont fall/trip. good luck and God bless :)

'My Dad was just diagnosed with Parkinson's ' posted by Janice Bird @ {post.created_at.to_s(:post_time)}

Janice Bird — Sat, 31 Oct 2009 14:57:14 -0000

SkinnyDugan: I love your writing. It is rich, authentic and courageous. I can "hear" your pain, joy and love. When people try to cheer you up it's because they don't know how to respond. It's natural for friends to want you to be happy. They think they are helping by having you look on "the good side".

I used to do this until my my Mom got Parkinson's. I've now learned to just listen to friends' worries, fears, etc., and "be" with them in the converstaion. If these are close friends, you could say to them that you appreciate their efforts to cheer you up but what you really need (or would be helpful) is for them to just listen, hold your hand, and give you a shoulder to cry on. You will find out which friends you can rely on for this type of support.

You might also find that a Parkinsosn's support group would be helpful.

I know what you are going through and it's OK to grieve. It's part of being "human".

Sending hugs!

'My Dad was just diagnosed with Parkinson's ' posted by SkinnyDugan @ {post.created_at.to_s(:post_time)}

SkinnyDugan — Sun, 25 Oct 2009 00:32:42 -0000

Hello. This is the first time I have ever responded to any type of posting on any internet site. I have always gained support and advice from reading posts from you wonderful individuals, but I've always had a fear of writing my thoughts, like it's securing fate. Ha. Sorry if this is gibberish, like the ramblings of a preteen girl's diary, but here goes.

My wonderful dad was recently diagnosed with Parkinson's, then unrelated Dementia a month later. He's my favorite guy, one I've worked really hard to build a relationship with after years of anger I carried for him. He's always been the first to demonstrate love and compassion for others; he emulates empathy. But from the age of 12 to the age of 22 (god bless college as a time to reevaluate) I couldn't look him in the eyes or hug him after a very difficult period in our lives. Yet I loved him, and grieved over the loss of our relationship. Thankfully, forgiveness graced us (for each other) and I became determined to rebuild the close bond our family had always shared. I also knew it was a matter of time (my dad was 53 when I was born) and that he wouldn't be around forever. Now or never, right?

Well life's great, for the most part. I have another wonderful man in my life, I look forward to having kids someday sooner than later, but not tomorrow, and I want them to know my funny, witty, brilliant, slightly egotistical, loving, music-snob father. I want more time. I'm selfish, and I hate that every day I see more of him disappear. For years we thought it was the side-effects of his excessive anti-depressant prescriptions, which I think made us silently resent him, blame him for his lethargy, and try to overly motivate him to become more active, as though that would jump his mental state back to "normal". We thought the shaking, the loss of interest in discussing politics or the meaning of life, the shuffling of feet, the constant sleeping, the slightly vacant look were just side-effects (again, which I resented but resigned myself to) and aging (he turned 80 this year). And so did his doctors. Lo and behold, he's no longer on any of his 4 anti-depressants, and he's not depressed! Well that's a blessing, but lord knows how long he's been misdiagnosed. I'm just all sorts of upset and angry, and I can't actually blame anyone except life. I know this, yet when friends, or even family, comment how I'm "lucky" to have had my dad active in my life for "so many years", and that "it's natural" given his age, it feels like they're stealing my right to be sad, to grieve that he will never be "Dad" in some ways again, that my kids won't experience his thirst for life. It's like they just want me to cheer up, accept fate, and move on, and all I can think of is "Be grateful?" For what? And why? I was grateful before. I still appreciate him and will continue to, but that doesn't mean I have to be happy about this. False cheer won't bring him any closer to the man I knew. Let me be grateful AND grieve. Dad's disappering; don't make me blind to it, and let me call it what it is, a loss.

Sorry about the length. But it's my first time, eh?

'My Dad was just diagnosed with Parkinson's ' posted by Anonymous @ {post.created_at.to_s(:post_time)}

Anonymous — Fri, 25 Sep 2009 13:54:48 -0000

I ran across your story and it is very similar to my own. My mother was diagnosed with Parkinsons last year. We just noticed a slight limp and mild tremors and that was the diagnosis. I, as well as my family are devastated. She was immediately given the same meds as your dad. I have been doing research and that makes me feel informed which helps to encourage. I can tell you that this is a tough disease to deal with. We have begun to "babyproof" the house. My mom is also considering joining a clinical trial but hasen't decided yet. She got a stationary bike and goes to physical therapy. These things help. I will keep you and your dad in my prayers.

'My Dad was just diagnosed with Parkinson's ' posted by eggy @ {post.created_at.to_s(:post_time)}

eggy — Tue, 15 Sep 2009 16:04:29 -0000

I was diagnosed with PD 10 years ago. The best source of material on understanding the disease is the book written by J. Eric Ahlshog, MD, Mayo Clinic Parkinson Specialist. The title is The Parkindon's Disease Treatment Book

'My Dad was just diagnosed with Parkinson's ' posted by Suzyk @ {post.created_at.to_s(:post_time)}

Suzyk — Tue, 01 Sep 2009 16:11:59 -0000

Hi Sorry about your dad. Glad the medicine is working. My brother inlaw has parkinsons and also has Kaizer. He is in California. They gave him a neuro that he didn't like very well and requested one that was outside the plan and they said okay. It has not been a problem. Good luck to you.

'My Dad was just diagnosed with Parkinson's ' posted by joannlaro @ {post.created_at.to_s(:post_time)}

joannlaro — Wed, 10 Jun 2009 19:19:52 -0000

This sounds so similar to my 88 year old father. He is still swallowing ok but he too reverts back to his youth and often says things as if he thinks we are living in the past. He is in a nursing home because he is beyond homecare and always sleeps in his wheelchair.

'My Dad was just diagnosed with Parkinson's ' posted by beach house mom @ {post.created_at.to_s(:post_time)}

beach house mom — Fri, 05 Jun 2009 02:19:17 -0000

My dad has had parkinsons for 12 years he is in te third stage and up until this year he has managed it wonderfully witha great doctor and the medacations adjusted right.He is 80 years old and is having swallowing problems and balance problems.But he had a great life with it for 12 years.Get a good doctor and you and you have a long way to go.

'My Dad was just diagnosed with Parkinson's ' posted by LilyRae201 @ {post.created_at.to_s(:post_time)}

LilyRae201 — Tue, 02 Jun 2009 13:52:59 -0000

My husband was diagnosed at the age of 49. Just remember don't have your dad eat protien 1 hour before the medication or 2 hours after taking medication. Protein does something and lessens the benefits.

'My Dad was just diagnosed with Parkinson's ' posted by angie48 @ {post.created_at.to_s(:post_time)}

angie48 — Sat, 30 May 2009 00:49:45 -0000

I feel for you - nursing home care is not always the best alternative sometimes its the only care - but I could suggest you try looking into other facilities - even when on medicaid they still have rights to proper care - and being transfered to another facility is a possibility- the reason I think good ability to find the correct meds may be the doctor's inability or hesitancy to experiment - finding a doctor that is willing to trial can be done if you have the ability - again I don't know your situation - some of my moms doctors in my opinion could of been more involved - like the geriatric doctor that was caring for her the last four years - the day she was diagnosed terminal he didn't even come to the hospital to see her - he sent a covering doctor and never saw here again - my mom had been diagnosed with parkinson's and had a few strokes though it took her awhile to recover most - she saw all the doctors was prescribed meds and ended up dying from a massive tumor in her brain and spine two years later- and I can't help but think that alot of her symptoms were overlook due to general diagnosing for most eightytwo year olds I do suggest you keep reading online- try different sites-ask ask ask again for more help - there are people who can network and services and I did learn alot in that very short time - I wish you well and god blessed - angie

'My Dad was just diagnosed with Parkinson's ' posted by SSS @ {post.created_at.to_s(:post_time)}

SSS — Thu, 28 May 2009 03:00:15 -0000

You live too far away.....

'My Dad was just diagnosed with Parkinson's ' posted by esnow3 @ {post.created_at.to_s(:post_time)}

esnow3 — Thu, 28 May 2009 02:32:17 -0000

**********************double check the care*******Iam looking for work now**********

hello i hope het better for you,please be sure to double check on his care, pop in without calling.i am personal caretaker looking for position i worked for lawyer in mckees rocks pa he past away at 98,Iam male with long historty of careing for people loved onces., the thing about i care for people like they are my parents,i have clean crimnail records

*****************call me direct lets talk****iam not looking to work for any state agency or program,cash***********************724-968-3301 Earl J ....

'My Dad was just diagnosed with Parkinson's ' posted by Anonymous @ {post.created_at.to_s(:post_time)}

Anonymous — Tue, 26 May 2009 21:33:24 -0000

Thanks Earl, but the nursing home only walks 3 times a week, prefers drugs to keep them quiet but it usually aggitates them.

on a puree diet now because they lost her teeth

Easier to diaper her than put her on the toliet.

I'll try and stay positive, but why is it so hard to get quality care just drugs.

'My Dad was just diagnosed with Parkinson's ' posted by esnow3 @ {post.created_at.to_s(:post_time)}

esnow3 — Tue, 26 May 2009 13:52:20 -0000

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

'My Dad was just diagnosed with Parkinson's ' posted by Anonymous @ {post.created_at.to_s(:post_time)}

Anonymous — Sat, 02 May 2009 20:36:16 -0000

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.

'My Dad was just diagnosed with Parkinson's ' posted by NewMexicoTam @ {post.created_at.to_s(:post_time)}

NewMexicoTam — Thu, 30 Apr 2009 15:33:21 -0000

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 Dad was just diagnosed with Parkinson's ' posted by tigerlovinlady @ {post.created_at.to_s(:post_time)}

tigerlovinlady — Thu, 30 Apr 2009 14:30:03 -0000

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.

'My Dad was just diagnosed with Parkinson's ' posted by tigerlovinlady @ {post.created_at.to_s(:post_time)}

tigerlovinlady — Thu, 30 Apr 2009 14:13:33 -0000

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.

'My Dad was just diagnosed with Parkinson's ' posted by angie48 @ {post.created_at.to_s(:post_time)}

angie48 — Wed, 25 Feb 2009 18:06:31 -0000

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

'My Dad was just diagnosed with Parkinson's ' posted by NewMexicoTam @ {post.created_at.to_s(:post_time)}

NewMexicoTam — Wed, 25 Feb 2009 16:13:41 -0000

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]

'My Dad was just diagnosed with Parkinson's ' posted by angie48 @ {post.created_at.to_s(:post_time)}

angie48 — Wed, 25 Feb 2009 13:20:18 -0000

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 ?

'My Dad was just diagnosed with Parkinson's ' posted by Anonymous @ {post.created_at.to_s(:post_time)}

Anonymous — Tue, 24 Feb 2009 20:42:45 -0000

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.

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