[dragonfly33]

Hello - Please excuse me if I do not use proper terminology. I know so little about this disease.

October 2009 - My dad had a heart attack, then tripled bypass at which time I found out he has COPD. (I am unsure of when he was diagnosed)

My family noticed he was having some tremors in one hand with some head shaking or jerking and after 2 years with much convincing, he saw a neurologist who ruled out a stroke/TIA's and he was diagnosed with Parkinson's in December of 2009. The neuro put him on a vitamin regimen because he said the meds used to treat Parkinson's have very bad side effects and he was not at a stage that warranted medication - yet. It seemed to keep symptoms at bay for almost 3 years.

He just went for his annual check up 4 months ago and the doctor said he would fail a field sobriety test but he claims the doctor said it is okay to drive.

We are noticing other things but when we ask him, he says he's fine; he cannot stand without supporting himself on a chair, shopping cart counter, etc. The tremors are worse now. He also appears to have intermittent eating or swallowing difficulty, to the extent that it makes him throw up.

He refuses to go to the doctor but I'm extremely concerned for him. He is home alone during the day because my mom works. We just don't know what to do at this point, he refuses to discuss any of it much less learn about the disease.

Any insight, advice, or education is greatly appreciated. Thank you.

[soccertese]

QUESTIONS
1. how old is your dad?
2. where does he live?
3. have you talked to his GP and neuro and does the GP agree with the neuro?

I find it hard to believe a neuro prescribed vitamins as the only thing to treat a condition which from your description is an advanced case of pd or pd like. there must be more to this story. pd med side affects are so variable you can't generalize, you just stop/change the meds if they become worse than the pd symptoms.

if you can't influence your father to see a doctor then imho you need to see a social worker along with your mother for advice. seems that's the first problem you need to solve.

[lurkingforacure]

Originally Posted by dragonfly33

Hello - Please excuse me if I do not use proper terminology. I know so little about this disease.

October 2009 - My dad had a heart attack, then tripled bypass at which time I found out he has COPD. (I am unsure of when he was diagnosed)

My family noticed he was having some tremors in one hand with some head shaking or jerking and after 2 years with much convincing, he saw a neurologist who ruled out a stroke/TIA's and he was diagnosed with Parkinson's in December of 2009. The neuro put him on a vitamin regimen because he said the meds used to treat Parkinson's have very bad side effects and he was not at a stage that warranted medication - yet. It seemed to keep symptoms at bay for almost 3 years.

He just went for his annual check up 4 months ago and the doctor said he would fail a field sobriety test but he claims the doctor said it is okay to drive.

We are noticing other things but when we ask him, he says he's fine; he cannot stand without supporting himself on a chair, shopping cart counter, etc. The tremors are worse now. He also appears to have intermittent eating or swallowing difficulty, to the extent that it makes him throw up.

He refuses to go to the doctor but I'm extremely concerned for him. He is home alone during the day because my mom works. We just don't know what to do at this point, he refuses to discuss any of it much less learn about the disease.

Any insight, advice, or education is greatly appreciated. Thank you.

So sorry you are going through this. This forum is a great place to get information about PD, research about PD, and the people here are wonderful. I would also recommend you and your mom and other family members go to the PD caregiver's website, just google Parkinson's and caregiving and you will find it. The caregiving website will have more information about how to live and care for someone with PD, obviously, which it sounds like your family needs at this point.

You can learn a ton here about PD and research involving it, past, present, and future, both mainstream medical and alternatives people are trying. The caregiving site will help you learn what your dad is going through, and how others help their loved ones with various issues....good luck. Learning as much as you can will help you help your mom and dad the most.

[dragonfly33]

Originally Posted by soccertese

QUESTIONS
1. how old is your dad?
2. where does he live?
3. have you talked to his GP and neuro and does the GP agree with the neuro?

I find it hard to believe a neuro prescribed vitamins as the only thing to treat a condition which from your description is an advanced case of pd or pd like. there must be more to this story. pd med side affects are so variable you can't generalize, you just stop/change the meds if they become worse than the pd symptoms.

if you can't influence your father to see a doctor then imho you need to see a social worker along with your mother for advice. seems that's the first problem you need to solve.

1 - He will be 70 in December.
2 - He lives in Northern IL, close to the WI border.
3 - Do the GP and the Neuro agree about the diagnosis? Yes.

His condition was not what you are calling advanced when he was diagnosed. The neck tremor was intermittent, and the hand tremors were mild to moderate.

Why isn't the Neuro prescribing or suggesting meds at this stage? Aren't we at the level now?

I don't see them more than once or twice a month, they are 1.5 hours from me and I'm in school full time so I can't observe as often as I'd like. When I do ask about things I notice or about information my mom relays back to me (such as the field sobriety test), he denies the doctor said any such thing. I noticed that he's having some memory issues so I'm not sure if it's PD or denial.

Please feel free to ask me other questions, I'm happy to give you any information that you can use to advise me.

Forgive my ignorance, do I contact the Health Department about the social worker? I will talk to my mom, she's frustrated because talking to him about ANYTHING to do with his health is like talking to a brick wall.

[dragonfly33]

Originally Posted by lurkingforacure

So sorry you are going through this. This forum is a great place to get information about PD, research about PD, and the people here are wonderful. I would also recommend you and your mom and other family members go to the PD caregiver's website, just google Parkinson's and caregiving and you will find it. The caregiving website will have more information about how to live and care for someone with PD, obviously, which it sounds like your family needs at this point.

You can learn a ton here about PD and research involving it, past, present, and future, both mainstream medical and alternatives people are trying. The caregiving site will help you learn what your dad is going through, and how others help their loved ones with various issues....good luck. Learning as much as you can will help you help your mom and dad the most.

Thank you, I have been trying to comprehend PD since his diagnosis and I read what I can but from what I understand, it's a very complicated disease that effects everyone different so "pinpointing" is difficult, is that correct?

After talking with my mom today, I suggested that we start logging notes on the calendar with changes or different things that are happening to him. I feel by doing that and accompanying him to his next visit with the Neuro (I'm trying to get that pushed up before his annual visit) I can go prepared.

I'm heartbroken and ready to stage an A & E type intervention. I love him so much and I feel like I'm just standing here watching it unfold and I can't do a thing about it.

[soccertese]

i can't give medical advice, i'm not a doctor.

not saying this is what's happening to your father but my mother in law started to develop dementia and she would repeat the same things and became very difficult to "manage". started mistrusting everyone and eventually she had to live in a skilled nursing facitliy. so it seems you need to get your father to a doctor but if he's competent in the eyes of the law there's nothing you can do to make him go unless you get him declared incompetent. it seems your mother can't deal with this and your're very busy and out of town. any friends or relatives that can step in? i assume not otherwise you wouldn't be in this position. Can the GP make a house call? Off the top of my head sometimes churches, etc.. are a starting point for advice, even an attorney. And of course the GP. Best of luck, your're in a tough situation. Lurking had some great advice.

[dragonfly33]

Originally Posted by soccertese

i can't give medical advice, i'm not a doctor.

not saying this is what's happening to your father but my mother in law started to develop dementia and she would repeat the same things and became very difficult to "manage". started mistrusting everyone and eventually she had to live in a skilled nursing facitliy. so it seems you need to get your father to a doctor but if he's competent in the eyes of the law there's nothing you can do to make him go unless you get him declared incompetent. it seems your mother can't deal with this and your're very busy and out of town. any friends or relatives that can step in? i assume not otherwise you wouldn't be in this position. Can the GP make a house call? Off the top of my head sometimes churches, etc.. are a starting point for advice, even an attorney. And of course the GP. Best of luck, your're in a tough situation. Lurking had some great advice.

My apologies, I didn't mean to imply that that I was seeking specific medical advice. I'm just terribly confused.

My father is difficult because he is very closed minded in many aspects. After his heart attack, he lives as if he got new plumbing and he is good to go. Still smokes like a fiend, does not exercise, hasn't changed a single eating habit. I believe (don't quote me) statistically, heart patients that don't change their lifestyles usually die within 5 years of their bypass surgery. In my mind, triple bypass is a gift and a HUGE wake up call. But that's just me.

Is dementia a symptom/complication of PD? The GP is a mile away from their house! I am contemplating quitting school. My mom HAS to keep working because she has to have decent medical insurance because he is so unhealthy now. Besides, I think he would make her crazy.

I'm not trying to have my dad committed or his rights taken away, if he wants to do absolutely nothing, I/we can talk/plead/beg until we're blue in the face and it won't make a difference. If that's the case then I think he needs to do some serious soul searching and make his wishes known to us.

[soccertese]

Originally Posted by dragonfly33

My apologies, I didn't mean to imply that that I was seeking specific medical advice. I'm just terribly confused.

My father is difficult because he is very closed minded in many aspects. After his heart attack, he lives as if he got new plumbing and he is good to go. Still smokes like a fiend, does not exercise, hasn't changed a single eating habit. I believe (don't quote me) statistically, heart patients that don't change their lifestyles usually die within 5 years of their bypass surgery. In my mind, triple bypass is a gift and a HUGE wake up call. But that's just me.

Is dementia a symptom/complication of PD? The GP is a mile away from their house! I am contemplating quitting school. My mom HAS to keep working because she has to have decent medical insurance because he is so unhealthy now. Besides, I think he would make her crazy.

I'm not trying to have my dad committed or his rights taken away, if he wants to do absolutely nothing, I/we can talk/plead/beg until we're blue in the face and it won't make a difference. If that's the case then I think he needs to do some serious soul searching and make his wishes known to us.

1. dementia is a factor in pd, just google parkinson's and dementia.
2, if he has early dementia then that may explain his behavior and that needs to be determined. *admin edit*
3. if you haven't reached out for local support then imho you need to that asap, you have to deal with an elderly parent and with/without pd **, sounds like even if he saw a dr. he wouldn't follow their advice but if he has ear;y dimentia then he can't help himself. you need advise from experts, **. you need a comprehensive plan for dealing with aging parents.

4. i suggest you get "THE PARKINSON'S DISEASE TREATMENT BOOK" by AHLSKOG
best of luck, *admin edit*

[johnt]

Dragonfly,

If I understand your posts correctly your father was diagnosed by a neurologist with PD nearly four years ago. He was, and still is, prescribed "a vitamin regimen".

At this stage post-diagnosis, a person of his age and symptoms would typically be prescribed several hundred mg per day of levodopa based drugs. Although they do not cure the disease, they dramatically reduce the symptoms for many people for several years.

Try to find out why this approach has not been tried.

Try to get him to exercise, preferably in a social situation. This is likely to reduce the chances of depression developing, which often intensifies the symptoms.

John

[lurkingforacure]

Originally Posted by dragonfly33

Thank you, I have been trying to comprehend PD since his diagnosis and I read what I can but from what I understand, it's a very complicated disease that effects everyone different so "pinpointing" is difficult, is that correct?

After talking with my mom today, I suggested that we start logging notes on the calendar with changes or different things that are happening to him. I feel by doing that and accompanying him to his next visit with the Neuro (I'm trying to get that pushed up before his annual visit) I can go prepared.

I'm heartbroken and ready to stage an A & E type intervention. I love him so much and I feel like I'm just standing here watching it unfold and I can't do a thing about it.

You are right, every PD patient is different...which means that your dad needs his family to advocate for him, as you know him best and see him and his symptoms the most. You will find many neuros/MDS pigeon-hole us into categories because it is easy (and they are less likely to be sued)....we had one doc tell us: "oh, you've had PD five years, it's about time you added Comtan to your meds" (uh, no, we are doing fine without it), you get the idea.

Know that the docs can get angry with you for learning about the disease and trying to keep up with the research....but hold firm. If you/your mom disagree with the doc, find another doc if you can. Hopefully he has a great medical team and they will work with you to help him as much as possible.

If your dad does not have his affairs in order, now is the time if he is competent. General power of attorney, power of attorney for health care, living will/DNR, will, etc. Get those documents taken care of now before you need them, because once you need them, it is very often too late to get them. Have your mom sign hers as well, it will make your dad feel less like he is being picked on (not that he is, but he is likely to see it that way) and your mom needs those in place anyway.

While you need to know as much as you can about PD, it is really more important, IMHO, to be kind, compassionate, and understanding. Remember that your dad did nothing to bring PD into his life, and would give anything to get it out. Knowing what mutations in which gene are linked to PD is all fine and good, but it will not help you when your dad is having a bad day. He needs to know you love him now just as much as you did before his diagnosis. Maybe more