Parkinson's Disease Tulip


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Old 10-09-2013, 02:10 PM #11
dragonfly33 dragonfly33 is offline
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Originally Posted by lurkingforacure View Post
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
I have already discussed getting his legal affairs in order just in case he gets to a point where he can't and my mom did agree. I also stressed the point that she do hers at the same time and she felt it was a good idea.

I also suggested that we find a doctor that specializes in PD and she does think his current doctor is very dismissive.

My only focus right now is getting him proper care. If he refuses treatment, I have to respect his decision, I just want him to know that he does have options and there is treatment for his symptoms.

Thank you for your help, I truly appreciate it.
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Old 10-09-2013, 02:20 PM #12
dragonfly33 dragonfly33 is offline
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Originally Posted by johnt View Post
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
Thank you John. We believe he is depressed however, we think there are several contributing factors. A month after his heart attack, my sister passed away suddenly, and maybe 3 months after that he was diagnosed with PD.

He is still on the same vitamin regimen since his initial diagnosis and that was part of my confusion. His symptoms are progressively getting worse, the balance, more tremors, memory, swallowing/eating difficulty, etc., and the doctor hasn't even suggested medication.

We have tried to get him to exercise and he won't even go for a walk with one of us. We bought him a treadmill with rails and he won't touch it.
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Old 10-09-2013, 07:41 PM #13
lindylanka lindylanka is offline
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Hi Dragonfly, I can see you are really trying to understand what is happening. You mention that you think your dad is depressed. Also that he will not exercise etc. This could be apathy, which is a sort of component of PD related depression. I do think that you and your mom need to discuss this with his medical team, medication could make a difference, and it may be that they will have more luck than you and your mom are having where meds are concerned. Would also agree with others that if his doctor is not helping with this a second opinion/different doctor would be helpful. I would as much as possible concentrate on quality of life issues too, communication can be a big issue in PD, and understanding what he wants is maybe as important as his healthcare needs.
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