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By newtothis On 2011.01.18 17:54
My mother was just diagnosed with Parkinson's. She is a few years before 60 and I am just about to graduate from college. Beyond all of the normal worrying about my future, a whole new wrench has been thrown into my plans.

Can anyone give me an idea what to expect? At least the ranges of time until she will really start to decline? I know that it is different for everyone, but is there any kind of average on how long it takes serious mental/cognitive symptoms to develop? Especially since she is relatively young and really doesn't have many symptoms so far, I'm optimistic - but of course, I'm also scared. How long before I really lose "her", even if she is still physically here?

By Emma On 2011.01.18 19:02
newtothis, First of all welcome! You will learn a lot and find kindred souls by reading this forum, asking questions, venting, whatever you need to do.

Now as for your question. You may never "lose" your mother. Not everyone with Parkinson's develops cognitive issues. She may well stay fully functioning mentally for the rest of her life. You are right that everyone progresses at a different rate. Everyone has different symptoms, different strengths and weaknesses. There is no way to say how quickly the disease will progress for your mother. We have people on this forum who either have had Parkinson's for a very long time or are caring for someone who has had it for a long time and are doing well. We also have people who are caring for someone who has declined very rapidly. In our case my husband initially seemed to stay at about the same level for two or three years then he would have a noticeable decine. Now he seems to be experiencing a decline about every twelve months. I really understand that you want to know but there is no way that you can. The best thing you can do is love and support your mother and educate yourself about the disease so that you are prepared come what may. Please do not drive yourself crazy worrying about things that may never happen but be aware of what might. Parkinson's can take a toll on the family and caregivers as well as the patient. Take care of yourself so that you can be strong for your mom.

We are always here if you need us.

By lurkingforacure On 2011.01.18 21:22
First thing I would do is get a second opinion. Over 30% of Parkinson's patients are misdiagnosed. Be sure you get a movement disorder specialist who has a LOT of experience with PD.

Don't be in a hurry to get your mom on meds, but do get her in a very healthy exercise program, healthy diet with lots of veggies, and yoga/tai chi. My mom doesn't have PD but had surgery last week and I am shocked, truly, at how weak her upper body is. It is all she can do to help lift herself out of the bathtub, get out of a chair, onto and off of the bed, and forget about core body strength. She slouches when walking, sitting, which makes it even worse. She is much older than your mom and won't do the core exercises but someone as young as 60 should be able to get a good amount of strength built up (gosh, remember when 60 sounded ancient? Ha, we'll all be there and it's not so funny now!)

Good for you for getting educated, and don't buy into all the PD things you may hear or read. There are a lot of PDers still living with PD 20, some close to 30, years with PD, who are still independent and without dementia. Keeping active physically and mentally with something you really enjoy is very, very important. Help your mom find these things, and be sure to take care of yourself as well, otherwise you'll burn yourself up and need two caregivers, one for her, and one for you. Good luck.

By karolinakitty On 2011.01.18 22:26
newtothis... welcome to the forum, you can learn a lot here. We have caregivers as well as a few patients to help you in this walk with your mom.

As Emma said each of us is different both in how fast the progression is and where we are in this journey. My guy is only has been dx (LBD,a PD plus disease) about 3 years, has mild to moderate dementia and progressed rapidly for a good while there. However, we took a proactive approach. He keeps very active, plays memory and other games on the computer, and is holding his own and in some ways doing better. There really is no way to tell you what will happen and how fast. Wish we could tell you there is.....

As lurking said...get to a movement specialist, google it for your area. If you have a teaching hospital nearby, more likely than not they have a movement clinic.
On the American Parkinson's Disease Association website they have a bunch of booklets you can get for free ...do it... get them.. it helped me a lot at first and they have one about the drugs themselves and drugs that interact with PD drugs.... i love having that handy when at the docs office....
The Mayo clinic website has great info too, as well as John Hopkins.......

You can vent, yell, scream, cry...whatever... we have all been through that initial diagnosis and how it feels when you hear the news... no question is stupid, our answers may be a little humorous at times, but, if we don't laugh..well......ya know.....

I was at our local pharmacy today. The gentlemen in front of me (about 65) just got the word from his doc he had PD.. He turned to his wife and said "well, you can't complain that i don't move enough now" i couldn't help but bust out laughing. The girl at the counter told them my guy had PD too. his wife looked at me and said in her sweet southern voice " Well gee honey, your husband must be a lot older than you"..It kinda of felt good to be looked at as "young" but i told her we were only 2 years apart and the it does effect younger folk....Gave them our number and told them about this site and if they needed any info to just call.......so humor can be one of the best medicines.....


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