New here, newly diagnosed
Hi all,
I'm not much of a user of support forums, really not at all to be honest. I'm a relatively younger guy in my early 40's.
Considering I have recently been diagnosed with early onset PD after the last 2 years of many specialist referrals, imaging, lab work etc to rule out/figure out what might be causing the issues and symptoms I have been living with and that have been progressively getting worse I thought I might start here.
So hello everyone, any thoughts or suggestions on how to move forward in my life in general now?
First and foremost, welcome to our site and our group! I realize it can take a lot for people to open up online, but I appreciate that you did. We're a great bunch of people. (-:
I'm also a 40-something Parkie, so I'll give you my advice and thoughts. I hope it can help.
1) You're still you. You're the same as the day before diagnosis. The only difference is your symptoms have a name. Try to do all the things you did before (unless you're not able or feeling safe with them). As you lose ability, transition to new hobbies. Active = good state of being to keep PD symptoms at bay.
2) That said, exercise, take your meds, seek medical guidance from your doctors, and stay social / active while you can. These all keep Parkinson's contained or slowed down.
3) There's no shame in having an off day or feeling overwhelmed. Be strong while you can > support hugs when needed > ask for help > ask for people to take over. These are the stages of a tough situation. Let your "team" know what you need.
4) Always believe in good things to come and do your best to see the good in your life now. It's not always easy or possible, but when you can, it will keep you solid through trials and tribulations. Everyone everywhere can benefit from perspective. The "hugs" above will help you when you're having troubles.
5) Don't search for advanced stage info until you need it. We don't all advance at the same pace or to the same place. Be realistic, but don't think in terms of timelines. Scary stuff that doesn't need to be known now isn't necessary until you're ready for it or moving into advanced stages.
These are things I've learned along the way. I've had good days and bad days, but we go on. It's what we do. I've learned a lot from my "be tough" early days. That's why I educate and advocate. I'm learning, too, all the time. This website's staff helps me out a lot. I help they help you, too.
I'm glad you chose to come here. If you need anything, don't hesitate to ask.
Dan parkinsonsdisease.net moderator and team member
Thank you Dan for your thoughtful and supportive reply. This is really great to hear and keep for referring back to.
Having good days and bad days is certainly been a struggle, and having those off days are super tough both for myself in trying to maintain/keep up appearances, and sometimes with others around me who have not been so understanding.
Asking for help has always been a struggle for me, trying to put this into practice more recently. Hoping it gets easier to do so in asking!
I've been started on Sinemet, no bad side effects and am titrating up. How can I tell if it's helping or not?
Thanks again!
Great answers Dan! Most important is to keep on living your life and keep your sense of humor!
I have been taking levodopa/carbidopa for a few years now. (I'm not early onset - was diagnosed four years ago at age 61.) What I find is that at some point after taking my dose I feel pretty good - like I can do stuff without extra effort. There is not a clear moment of lifting of symptoms. If I forget to take a dose for a couple of hours I'll wonder why I am moving so stiffly. LOL.
I did start a support group with a friend who was diagnosed several years earlier. We have grown by word of mouth. We meet for lunch at a restaurant once a month. We don't have educational programs at this point - just visiting, sharing concerns, telling jokes, reporting whatever is new. This approach gave us a group so we didn't feel so isolated and it is a group of people who are well enough to go out to eat. I agree with Dan that you might not want to be in a group that has people who are very advanced in the disease process.
Get regular exercise, plenty of quality rest, socialization and enjoy life! Lois
Thanks, Lois! Great points as well - especially, sense of humor, which goes a long way.
I'm sure some of this will get easier. You seem to have a great attitude and are learning as you go.
Unfortunately, I have no experience with Sinemet - just Azilect, Amantadine, Benztropine, Artane, and Ropinerole. I'm still on the first 2. The others weren't right for my system, but they work for others.
Have a great day!
Dan Moderator parkinsonsdisease.net
Hi Dan, and the whole group in this forum.
I signed up for this site, when doctors suspected early PD, but it wasn't confirmed until 7-30-2020.
I have been sick for years, but no doctor could pin point it. To me my biggest problem is whole body stiffness and chronically fatigued. I might be slightly ok to do my daily activities but only for about 4 hours and then it takes days to recuperate.
I work a 40 hour job and my quality of life is null. I go to work and then need to rest up after work and the whole weekends.I started Sinemet, but had to cut down to 1/2 tab 3x a day, due to nausea and dizziness, to the point of vomiting if I do not last down right away.
Just started raising dose to 1 tab 3x a day yesterday per doctors instructions after being on the 1/2 dose 3x a day for the last 6 weeks and took a whole tab morning and noon, but cut my evening one in 1/2. I have tried taking it with food and crackers.
I'm so frustrated and feel so alone, and at times freaking out cuz I hate feeling so miserable. I am grateful for my husband who takes care of me when I'm down for the count.
Any ideas from anyone here about tolerating Sinemet, what helps?Thank you all for letting me vent!
God's Blessings Always,
NeidalynI wish you well in your adjustments. I realize how difficult it is to find the right medicines. I've gone through several, but unfortunately, I can't help on Sinemet, since I'm still on azilect. I hear you on exhaustion. I'm currently in the process of trying to get medicated for that, too. Unfortunately, that's part of the life of a Parkie.
I wish I could say that I did, but unfortunately, I haven't. Keep us posted on how your symptoms go.
Dan Moderator parkinsonsdisease.net
, I am 77 and was diagnosed 3years ago, Before that I was diagnosed as having essential tremor in2015, I was also falling a lot. I had DBS surgery which helped the tremors. Just recently I started levadopa. It makes me nauseated until I get a meal. My PD has progressed into having a speech problem and some swallowing issues. I am presently looking into speech therapy. I have learned to take one day at a time, exercise,eat healthy and enjoy life.
