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Father just diagnosied. PLEASE help I feel so lost

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Parkinson's Disease
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Posted 12/17/2009 8:25 PM (GMT 0)
My father was diagnosied with PD yesterday.  We haven't discussed anything yet and I am the only one in the family that knows other than my mother.  I know that knowledge is power but it is a lot to take in.  I am angry that there is no true diagnosis and no way to tell us what to really expect and how fast and if and when to expect a decrease in his mobility and ability to care for himself.  He is only in his 50's.  He has always had a tremor in his right hand and in fact I have the same tremor.  We were always told it was nothing to worry about but now his is suddenly more. 

I just feel so lost. where is a good place to start this journey?  I have been on the phone all morning and have made contacts to get him in to see a movement disorders specialist before the end of the year.  But I do not know anything about what to ask or where to start.  Our local neurologist would like me to get checked as weel, but I thought PD was not genitic.  Genetics only effects 5% right? 

He is such as strong man.  How do I even approach the subject?  I am the strong one in the family and my mother who is an RN is trying to be there and act as though this is nothing big and we can deal with anything, but she turns around and falls apart on me after he was asleep last night.  I have to know and understand what we are facing so I can be strong and make the right decision for my family.  HELP WHERE DO I START???

Posted 12/21/2009 12:11 AM (GMT 0)
Welcome to Healing Well. A diagnosis of PD is always a shock, but the disease can be quite managable for years with the proper medication treatment. First, what type of doctor mande the dx. If it was not a neurologist, you will probably want to establish a relationship with one the has training and experience dealing with Movement Disorders. The are several excellant websites dedicated purely to PD. A great place to start is with the National Parkinson's Foundation. They have excellant patient and caregiver educational materials. I developed PD in my 40's. Most patients are more that happy to have a family member they can take to about this diseaase. Your father is fortunately to have you. Once you see the Movement Disorder Specialist more things will fall into place. Prognosis, treatment options, etc.

Good Luck.
Posted 12/22/2009 1:58 AM (GMT 0)

Everyone's Parkisonson story is unique but when I was first dx'd I was really freaked out and thought my life was over in a manner of speaking. The reality a couple of years after the first dx (which I did not actually believe until more recently, getting a second confirming opinion) is it has been very manageable for me and I am very optimisitc that it will be years before the disease really affects me in any subtantially limiting way (I am in my late 40s). I do have to take meds and some days are better than others but only a handful of people even know my dx (and only because I chose to tell them). In fact some of those I have told seem to suspect I may not really have the disease.  I am able to work a job that involves a great deal of responsibility, travel, have fun and live a normal life, other than knowing I have this disease.

So my point is, try not to react too stongly even though it is a very scary diagnosis. A good doctor can do great things and it may be years before your father has any symptoms that really impact his ability to live normally.

As far as where to start, you are right, knowledge is power. I have found the best concentrated source of info. is the Michael J. Fox Foundation site. There is also a "Parkinson's Disease for Dummies" book that is pretty good. This website is good too although keep in mind the disease varies a great deal by patient so you have to be guarded about drawing conclusions form other people's experiences.

I hope that helps. Good luck and God bless.

Posted 1/10/2010 6:09 AM (GMT 0)
Newbie here. I am online as my aunt just postulated my mom has the disease this afternoon. It never dawned on me, but I think she's right after reading this. My grandfather lived with PD after a brain surgery to remove a tumour when he was in his late 50's. He lived without too many complications from PD until age 86. The bruising from prednisone was the biggest issue.

My mom was a pro figure skater. She had knee replacements about 15 years ago. They found she has a broken ankle that never healed so they fused that. She continued to have pain. So they tried a cortisone shot in her hip. That worked, so they replaced the hip 4 years ago as the shot indicated that area was the problem. Not so. She still has back/hip pain. The hip rolls in and out of socket. Then they postulated she might have stroked as the other foot dropped 2 years ago. Her toes have curled and atrophied. We have replaced 3 walkers in the last 2 years. She falls often and can't operate the walker well - she's off balance and so plans her movement so she can run her walker in walls to stop her. I think the brakes give out because she leans unevenly on them. I note that she swings her bent leg to try and "step" and sometimes she stands almost as if paralysed trying to move her leg forward. I often will push it for her. There is no "gait"...it's more of a leg swing with a catch up hobble by the other foot. She is a young 73.

Mom's slowed since autumn. Her mood is less eradic but more flat. Her speech is slower and more deliberate as if she's working to project.... it's not obvious, just subtle. One social event will exhaust her for 2 days. I'm going to watch to see how she's eating/swallowing.

She does not have any tell-tale shake/tremor. Is it possible to have parkinsons that does not have the tremor? Is that what an atypical PD is?

She was planning to ask for the foot to be re-x-rayed. I believe she had an MRI but I don't know if they looked at the brain.... there's not been a referral to a neurologist. She manages with low dose pain meds and drinks alcohol. I'm now wondering if they've missed the mark. She had a PT from Arthritis Association come in and homecare comes for bathing help. She lives alone and had govt. retrofitting of her home to live independently after the hip replacement....

Now I'm thinking a neuro report and movement specialist might be helpful. Would they have to do another MRI and would the neurologist make the diagnosis? If she could get meds for the muscle control and stiffness/rigidity, maybe she's have better control and less falls?
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