This is my first blog post and I am so thankful to everyone who posts here. It's wonderful to read about others with YOPD that are going through the same things that I am.
I live in a small are north of Dayton, Ohio and I was wondering if there were any others close to me to connect with? I know there are some support groups in Ohio but I've not found any less that 40 miles away. I'd love to connect with people in my area. So... if there are Ohioans out there searching for the same, please post.
Have a blessed day.
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ladyhowell79
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I live in Illinois, not as close as you would like. I wish I could tell you there were support groups out there but I have not found to much in my area. My local hospital has a very small one and of course I am the youngest one there...not that I really mind but it would be so nice to find some younger people like me??? I think that almost sounded crazy.....I would not wish this on anyone...I am 48 and have had pd for over 4yrs now. I am getting ready to have my first fundraiser in my area.....April 14th...to bad you didn't live closer.
Hi Jeni. Illinois isn't so far.. This site has been very helpful. I'm 33 and I was diagnosed 2 years ago. I know of a group that meets a couple towns away but everyone is over 60 and the group seems rather small. I guess thinking that seeing someone my own age with PD, would be more beneficial, might be silly. I'm raising 4 children after divorcing their father after my dx. Sometimes its hard being young. lol. I enjoy my life and I'm very blessed.
I think it's really awesome that you are doing a fundraiser! How exciting! Is there a site I could go to and check out what you're doing? If I lived closer I would offer assistance or I should say, if we had talked sooner, I could have offered.
Wow, 33, I hate to say this, but I think I was lucky waiting till 40.....can't believe I just said that....
I know what you mean about the support group, all of the people in mine are much older, under line that sentence...and some of them are the caretakers and the ones with PD are gone, but they are so used to coming.....sad.
i need more.....younger people to talk to....
oh i shake like crazy and i did take some meds once but they made my stomach hurt bad, then went on sinament and well that was just to make the diagnosis and they made my migraines worse so I went off of that too. I know once I am ready I will have to take drugs for life or until something else comes up....so I have decided to wait....and shake....but it is doable for now.
You can read about my fundraiser at: sspdawareness.com
I'm in Missouri and wish for a YOPD support group also. While not specifically for yopd, this site is the best I've found. There are specific issues that I miss talking about--raising children, financial futures, progression of disease. Perhaps the most likely venue is a virtual support group. . .
Chris, I wonder why there aren't more support groups. I agree with you that as a Young Onset, our issues can be very different. Especially raising children. But I've enjoyed coming to this site. I think the biggest thing for me is going to bed 33 and waking 70, which is how I feel when my meds wear off. Maybe someone of that age couldn't appreciate that. lol.
Jeni, I think its amazing that you don't currently take meds. They say the longer you wait the better. I began meds right away, I felt that I didn't have a choice. I remember going to the zoo with my family before my dx and my youngest daughter walking with me and looking up saying, "I'll be slow with you mama." It broke my heart. I realized that this thing was very real happening to me. There were others also but this one stands out, and not having control over my left hand to massage or even steady a glass. The medicines gave me freedom to be a young woman. Some days can still be a challenge even with medicine, feeling trapped in this body, but overall my life and this body have been good to me.
What kind of symptoms do you have and what do you currently do to alleviate your symptoms?
what is your first name?? I can't tell from ladyhowell...
I did take meds when i first found out, the dr. insisted but after 4 months and loosing over 20lbs and constant stomach aches i went off of it. then they put me on sinamet, to prove for sure pd is what i had, but i did not want to stay on it, i am to young and know the side affects and not ready for that yet. I shake a lot on the left side but i just tell some people they make me really nervous....no i finally came out of the closet....i should not be embarrased or ashamed so if i shake so what, let them stare. my fundraiser is about awareness and education......People need to learn that we are not to be locked away, i can be who i am out in public....deal with it, i finally am.
I take muscle relaxers at night and they help but that is it...
It sounds like the medicines side effects were way worse than your symptoms. My symptoms are left sided also, besides pain. You are awesome for waiting, being patient with yourself. It's silly that we go through a "shame" stage, I've been through it. It helps me that the people that I love accept me the way I am.
Have you tried any herbs or alternative medicines? I've read that many really see results, on other message boards. It's funny in 2 years this is the first PD post other than simple statements of fb. Lol
It is nice just to talk back and forth. I just hating taking medicine. 40 and I took more drugs than my mother did at 74. Crazy. I will never stop my effexor, for depression, i know i have it and need it so i take it. it also helps alot with my migrains.
i would love to try alternative meds, i am taking vitamins and creatine. What else is there?? I will try others.....
Don't be afraid to go out, if you shake, shake...i have to drink out of sippie cups when i go out so if i dont bring one i ask for one. i would rather not make to big of a mess...my friends and coworkers are really good to me about this.
I completely agree about just messaging back and forth! It feels great just to talk so openly with another person who is going through the same things and can understand.
It's usually my children and I out and about and they seem to have radar for when my symptoms are whacky. One of them will see what must look like worry on my face, hold my hand and tell me "It's ok mama." I think one of the worst situations is the grumpy check out girl when my left hand won't steady long enough for a credit card transaction. But I try to come up with some witty little thing to say and give a little giggle, makes me feel better.
Some things that I include are foods high in antioxidants, blueberries, avocado, lots of greens, green tea, fresh fruits and vegetables. I have a very hard time taking vitamins and herbs unless they're chewable, like Flinstones and vitamin c.lol. But I've ready about CoQ10, Curcumin which is found in tumeric, vitamin E, fish oil, Ginko biloba, vitamin B complex.
Brahmi, Mucuna pruriensis and cowhage. These are all found to help PD and neurological health. I'm not sure about how much you take or when. I've really considered weening myself down from meds and taking these. It's a little scary because I know my meds work.
If you decide to try any of these, talk with a doctor or pharmacist to make sure about interaction with your regular medicine.
I hope this helped, and if you google herbs and vitamins for Parkinson's, you'll come across an enormous amount of information.
Wow, i would be popping pills all day long....maybe i should just eat better...i need someone to prepare my food for me,,,,is there someone out there like that...just for me...oh yeah, that is my husband...
i talk to all my co workers and friends so much about my pd that it is nice to just do it on here with someone who knows what i am talking about and then maybe i can give other people the day off.
Crazy but i dont think a day goes by that i dont talk about it some way or another. i wonder why that is, people with other diseases i bet dont talk about theirs everyday,,,,do they???
It's time for the hubby to go gourmet! lol. I always feel better when I eat better. I avoid fast food and too much processed stuff.
I know people with other illnesses and they seem to bring up something about its effects often also. I think because this companion of ours is always there, it's hard not to talk about it. Fatigue, exercise, research, medicine, work, family, faith, symptoms, PD affects everything we do, and for me every decision I make. I've tried not to talk about it and someone will ask.. LOL. I guess no one minds or they won't say. Hmmm.. should I ask if talking about it is tiresome to them?
I would love to eat better but it cost so much more...how crazy is it for us to be healthy, pay alot more for it....i do not eat very well at all. i really need to change my eating habits. i keep saying that but never do. my husband and i dont like to eat out much but that doesnt mean we eat good at home. i need someone to read all about my health, make up a meal plan for me with what i like to eat and then.....then i could do that.....is there anyone out there????? oh forget all of that just find the cure, make me thin, pretty and let me eat what i want....
Jeni, I think you're beautiful! I pray for a cure everyday and while I'm putting in my request, I'm thanking God that I am able to speak this prayer in the first place.
Maybe you could post some of your issues and ask for assistance with the right foods to balance things out... I have some books here about foods for different things, I'd love to help.
Thanks Melanie,,,you are are very kind, dont talk to my co workers they may tell you differently....
I could change my diet, i could do a lot of things differently, i just dont. Funny we can complain and then dont do anything ourselves to help ourselves...that is me...but no, i dont really complain, maybe moan a little....i have a lot to change in my life, and i will when i am ready. i am very lucky to have what i do and the people i have so i dont complain about them. I am very blessed. i feel i have this disease for a reason...not sure why but for a reason.
Thank you Jeni. I'm just grateful to have found this site and for our chats. It's helped me. It's like getting a dose of sunshine.
I have to agree with getting PD for a reason. It took some things from me and I've learned a lot about who I am and my strength. So I guess, as it robbed me or so I originally thought, I gained something that I needed. I definitely threw most of my vanity out, I say most and I appreciate the beauty around me way more.
My whines and murmurs happen on occasion and then I remind myself how blessed I really am.
I know that there's more that I need to do, but I'm not there.. yet. And I'd love to talk to your co-workers.. LOL!
If they are your friends, I doubt they find it tiresome.
I find that it's easier to talk to people on this site. I let my friends ask questions and go from there. There's just so much PD I get tired of thinking about. There really is no facet of life it hasn't touch.
Chris, you are so right about that! I know which of my friends stay totally involved and they want to hear how I am. But there are those people that ask you how you are and they are just being polite. I'm ok with that and they aren't in my everyday life.
I love this site! I'm so grateful for it. It really helps and I'm glad I got over myself and started posting.
I hate how ungraceful I am, but I'm too proud and stubborn to hide away at home. If someone asks (rarely) I'll tell them I have pd. Otherwise I ignore my own self! If people are curious I'm fine with that. If they are rude, I can handle that too.
Chris, being stubborn is on your side! My ungrace can be an issue. If I'm out and about and tripping over imaginary paper clips or fumbling with things in my left hand, I tend to feel myself get fearful, which makes things worse. Uggh! It's funny that people will look at me and not ask. I'd rather they ask, then I wouldn't feel the stress... maybe. But I will say, I think everyone in our little town knows because my children tell their friends when they come over. They've written reports that they've presented to their class. The kids will always ask, "Why does your mom shake or walk that way?" I love that they just ask. And I absolutely love that my children very nonchalant say, "My mom has Parkinson's."
Absolutely. I wish that adults would just ask--just like their children. It's simply kinder. Those question marked looks and then quick look aways from adults are hard to bear.
Ah well--I'll live with the discomfort pd is not going to stop me from getting out.
you are not ungraceful, the floor moved on you or the doorway moved...dont worry i 2 and 3 step all the time...when my friends do i thank them...they make me feel at home. no one is perfect...
Hi Jeni, I'm in KC. I was dx in 2007, but sx appeared several years earlier. I take sinement, mirapex, and admantadine.
I agree with Ladyhowell, it's amazing that you don't take any meds! I can't function without them--although the side effects are another issue.
I have a blog (very new) I'd love to add more posts about YOPD. You're welcome to check it out, suggest it to others, and post whatever you want about pd, etc.
i went to your blog, very cute...i bookmarked it, will keep up with it...
I dont know if it is amazing maybe just stubborn, you read one article and they tell you to take meds right away....will slow the progression....show me the pill...show me the pill......
I am also lucky my kids are grown and gone and my grandchildren are used to shaky mamaw....i work at a university and the kids here are fine with it, it is the staff that look at me crazy....huh, EDUCATE....
I went through that . My neuro is a sweetheart and wanted me to take all the so called "neuroprotectors" . They all made me sick so I'm on a minimal dose of sinemet. At least he listens.
My daughter is i kindergarten, I volunteer at her school. Also volunteered when she was in preschool. It's funny, but you're right, the kids have no problem with the effects of pd-it's the adults who are concerned and require both explanation and reassurance that I am indeed "OKAY" The kids know I "twist" when I walk, "sway" when I sit, and talk soft like a "tickle." I love their descriptions of me. They are openly curious without any judgment--it's lovely.
Hi Ladyhowell! I went to grade school in Fairborn. Hope you are able to form a group for YOpd. I have cousins in the area but we're not in touch. I'm not YOpd but I feel for you and wish you well.
Thanks Pat! That's so funny, because my first school was Five Star Elementary in Fairborn! We lived there for just 2 yrs and left at the end of kindergarten. What a small world!
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