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Topic Definition of young onset Parkinson's Go to previous topic Go to next topic Go to higher level

By Elly On 2011.06.25 21:16
What exactly is the definition of young in young onset Parkinson's? I have read different things on the internet. My husband was diagnosed three yrs ago at the age of 49 which seems pretty young to me....

By karolinakitty On 2011.06.25 23:49
Young Onset is usually described as being 45 or younger.....there are some doctors who prescribe to 50 and under....our movement doc is one....he says he considers that because a lot of folks diagnosed at 50 have really had it for years, but, like us, brushed it off as the onset of old age......

By Elly On 2011.06.26 09:10
Thanks, Karolinakitty. I suspect my husband had it for yrs earlier too since he had bad arthritis in his hip and we probably brushed some of our concerns off on that. PS I assume you are from the Carolinas --I am a Duke fan but have great respect for the Tar heels.

By LOHENGR1N On 2011.06.26 14:46
Elly, We've all had it for years before diagnosis. 60% to 80% of the cell in our substantia nigra (the part of our brain that produces the dopamine) have died off before the symptoms of Parkinson's become recognizable or send us to the doctors. Doesn't help much but just to confirm yes we've had it for awhile.

By lilflower On 2012.10.14 23:13
My hubby was diagnosed at 48 years old and told he probably had PD for at least 10 years prior. He continued working as a heavy equipment mechanic until he was around 55 and then had to go out on full disability. He's 62 years old now and the changes over the years have been tough but keeping laughter and prayer in our lives help. He has 2 older sons from a previous marriage and I don't think they understand or realize the extent of their fathers disease or they are just in denial I'm not sure which. Either way I am on my own with my husband and some days are good and some are tough but everyday we have together is good so we keep going.

By Laurel On 2012.10.15 13:04
It sounds like we're in a similar boat, lilflower. My husband was 40 when diagnosed. Now, 17 years later, he can't concentrate to work any more. He's on disability, technically employed until early March. Then, like so many other PDers and their families, we have to figure out how to keep insurance. Or go on Medicare. It's time for us to look into this -- I'm on disability too...

Steven has two adult step-sons and they're not in touch or useful in any way either. And my youngish (13 and 11) children don't really understand. They see Steven sitting in his recliner most of the time; they don't see anything else because he doesn't generally have obvious physical symptoms, and they're not aware of his cognitive impairments. And they're too young to be a support anyway -- they're going to need support themselves as this progresses.

But Steven and I laugh a lot...

Take care,

~ Laurel

By LOHENGR1N On 2012.10.15 15:56
Laurel, It might be worht going to the American Parkinson's Disease Assn. site and clicking on the young onset link (I think it's also the Arlett Johnson center). With your younger children they have booklets and such to help explaine the disease to children from young age through teens to help ally fears and understand things that may happen. They even have support online chats, meaasage boards etc where different age groups can communicate with their peers about what's happening. I hope this helps I know I found them valuable inMy coping with Parkinson's and relating what was going on to my children when they were younger. When I was diagnosed my children were 3, 9 and 11. Take care, best of luck and hang in there


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