Living with Parkinson's Disease - Meet others & come say hi

Hi @hopeful33250 @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth:

I'd like to invite you to the new group on Connect dedicated to discussions about Parkinson's disease. It's a space where we can ask questions, share tips and learn about living with Parkinson's from each other. Whether you live with Parkinson's or care for someone with Parkinson's, please join us. Pull up a chair and tell us a bit about yourself.

Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth. Well we finally have our own group! I'm excited to learn more about you and have some more topics for discussion. Let us know how you are doing and what has helped (or hindered) you in your daily life with Parkinson's. As we know, all of us are stronger together!

My husband has only started with the incontinence issue and I am nearly at my wits end - both mentally and physically.  Im not sure if this is from the Parkinsons or the dementia but I am now wondering if I should have left him in the assisted living facility.  Not sure how long I can keep this up with about 2 hours sleep each night. Last night was the worse night so far so I am feeling a little sorry for myself this am I guess.The Redhead

@tntredhead Incontinence is an issue that can be related to Parkinson's and probably dementia as well. If you have not used the adult diapers, especially at night, that would be a great idea and it would give you a better night's sleep. Some are made especially for nighttime use. You could also check with your husband's doctor to see what other medical issue might be involved (perhaps a urinary tract infection) especially is this is a new problem. Keep us posted and let us know how he (and you) are doing.

Hopeful33250. I do use the adult diapers and the pads under him but it just doesn't seem o handle the problem. He was checked for the UTI and everything is fine. The doc tells me that the disease is just progressing very quickly right now and today/last night is just a very bad time.,  Thanks for your advice though.  I appreciate knowing someone understands.The Redhead

@tntredhead I'm sorry to hear that there isn't a simple answer to the problem. It is important for you to get your rest at night.

I'm not sure I belong in this group, but I have a friend with PD, and I do care.

My husband has Agent Orange related ischemic heart disease, and my gut feeling is that, that has been instrumental in his development of early onset dementia, which I feel is due to ischemic buildup in the small blood vessels to the brain. Although the government has not yet recognized this connection officially yet, one VA comp Doctor believes it will eventually be connected to AO, due to some similarities to PD, but not until after many more years of testing.

From reading what I have so far, my heart aches for people who have this disease. There is so much more to it than I had realized.

I can relate, just a bit, but only in a very limited way, because I have "Essential Tremors" - a genetic gift from my mother's family. The shakiness drives me crazy some days, and, yes, you can see that others wonder what in the world your problem is. So, I can relate, even if only in a limited way. Feeling stressed only makes it worse. I've never understood why people are so judgmental about shakiness. My grandmother shook, my mother shook, I have cousins who shake, and, now, I shake, so I've been seeing it for years. It is such a ridiculous thing to be judgmental about.

I know that there is much more to PD than shakiness. As I said, it just allows me to relate a bit.

I will continue to follow this site, and I send my best wishes to all of you.

Macbeth

Thanks @macbeth, I appreciate you sharing the story of your husband's AO health issues. I wish there was a quicker way to address these health problems. I also appreciate your empathy for those of us with the "shakes." Yes, it should not be something that we are judged on, but it seems that anything different is judged. That really is too bad.

I also have Essential Tremor. I have been trying every med in the book and right now I am on Timolol (Pill form) and so far it is working. You might ask your Doc about it. I've tried other meds ending in "olol" and some of them worked for awhile.

I am sure your husband dosn't feel to good about the fact that he is having this issue. And he does know what is going on. I spent many years, i mean many years taking care of my mother. Who knew what was happening and others thinking she did know anything. We are always there.

But I am here to speak on the issue of Parkinson. I was diagnosed with PD last year and with Fibromalgia this year. I have a tremor in my right arm, have problems holding onto things. My doctor tells me I have early stages of the disease. I am an artist and writer. This is causing me a great deal of depression. I have other issues as well.

Others think that there is nothing wrong with me, that I am making all of this up. You don't have Parkinson's I is all in your head. Between these two diseases, it is hard for me to even hold down a job. I can't even get disability. I feel very discriminated against

I am new to this. I am only 55 years old and it feels like I have been given a curse. I spent most of the last 15 years taking care of my mother. she passed away this pass January. And this is what happens. I now I shouldn't feel I deserve something else.

I didn't take care of my mother for applause. I did it because it was the right thing to do.And I would never trade what I did for anything in this world. It was the best gift I could of ever received from GOD,.I would do it again in a heart beat.

But to have be given these two diseases

Thank you

Kris Schmuland