49 year old only sibling passed away from Parkinson with lewy body dememtia.

[Jcastro]

I am looking for a support system , maybe someone else may be experiencing the same hurt and pain that I am.

[Hikoi]

How very sad for you. It must be so difficult to loose someone so young. Some types of Parkinsonism are very cruel.

As well as here there are lots of facebook groups, i dont know specifically but you might try one for grief or bereavement.

[Hidden]

A friend x2 committed suicide.

My pit bull had to be put down.

Two of my favorite cats had to be euthanized.

My maternal gmother passed at age 101.

Both my parents passed on to the next world.

[Rebtar]

The good thing about having a disease like PD is that it has made me face my fragility and mortality. My dad died of PD complications, after several years of dementia and full dependence, which was scary and painful to watch. When I got PD it terrified me but increasingly less so, as I come to accept that life is short and comes with major challenges. Life is cruel, and wonderful. You loved your sibling, and it's hard to suffer from such a disease but perhaps as hard to watch a loved one suffer. Death is both terrible and a release from pain. Be kind to yourself. There are many good people here to listen...

[ddmagee1]

Please accept my deepest sympathies for your loss. There is a Lewy Body Dementia support group that may be of support to you, during your time of grief. Please Google Lewy Body Dementia Society/Group. My Grandmother died from Lewy Body Dementia, as part of her old age, along with PD. It was painful to see her deteriorate, and will be forever etched in my mind. I have PD, and hope I won’t get Lewy Body Dementia. For you to lose a sibling at such a young age, from Lewy Body Dementia is, indeed, sad and, perhaps, unexpected. Early onset PD and Lewy Body Disease can be very cruel to it’s victims. Some people don’t realize that Parkinson’s, Lewy Body, and Amyotrophic Lateral Sclerosis ( Lou Gehrig’s disease ), are all neuro-degenerative diseases, where neurons are dying/ damaged in the brain. In some cases this neuro-degeneration occurs within just a few short years. Once the neurons are gone, there’s no way to replace them. This forum is a good support group forum, because we who have PD, have gone through a lot, in terms of neurological deficits, and understand the great difficulty of what it means, when one has trouble with movement, and getting dressed, eating, etc. We have some insight in sharing with others, our experiences, and hope for research for cures for incurable diseases. I hope you can benefit from several support groups. A bereavement group might be helpful to you, as well. If you call a local hospice organization, they would be able to help you with that, I believe. I have four siblings, and each one is special to me, so I can understand your feeling of loss. Best wishes to you!

[NRyan]

My condolences. I can't imagine watching a younger family member go through that, It must have been very difficult. It was hard enough with my dad starting at 61. My heart goes out to you. I have PD at 50, I am hoping to hold off the dementia as long as possible. Life does suck. There are many sweet spots along the way too. PD teaches you that, for sure. Hugs to you.