What's shakin? ME!

[Cutewithclass]

Hello to all and best wishes and positive vibes; Kind, empathetic and sweet-natured 46 year old man with early adult onset Parkinson's disease trying to live as normally as I possibly can. Being a novice here, and trying to branch out socially and offer support to other's. Johnny

[park_bear]

Welcome to our club, Johnny!

Nice headline.

[mludi28]

Welcome to the very exclusive YOPD club 😉 I'm 47 yo and, like you, coming to grips with this lifelong unwanted guest.

[GinnyBerry]

Hi. Welcome! You’ll enjoy the community. I’m 43 — with the bradykinesia, rigidity variant. I have a daughter, too (she’s 7). I’m trying to enjoy my summer. Hiking and biking lots.

[Cutewithclass]

'Evening to all, and thanks for the joyous and considerate welcome! I'm glad I joined, as it's fine people like you that make dealing with this easier; I was in denial for a long time, as I'm sure a lot of people felt after their diagnosis. A beautiful evening to all! Johnny

[Cutewithclass]

You sure can! Everyone says I " look " like a " Johnny Boy, " even at 46...whatever that means!

[Kwinholt]

Hi there Johnny, My name is Karen diagnosed at 49. I will be 55 this July. I’m very active but I also take a lot of meds. Still work full time and competitive runner. Welcome to this venue , I am so happy to read about the journeys of others and know that people out there understand what’s going on with me and how I feel. Take care.

[Joy-love-magic in reply to Kwinholt]

I also got Parkinson’s or rather diagnosed with Parkinson’s at 49.

When you say take a lot of meds, how many do you define as a lot ?

I am taking 12 daily for Parkinson’s, and three more for other things.

It just scares me that I take so much medicine, I am also in chronic pain so I’m taking a lot of Advil or Tylenol and now I’m worried about my kidneys and liver, so just curious what others take-

[Kwinholt in reply to Joy-love-magic]

Hi there, well I take 6 25/100 cd/ld, sometimes more depending on how many miles I’m running. Also azilect in the morning and Comtran with my afternoon doses of Cd/ld. I too have pain , I take 3 ibuprofen every morning . I also take several vitamins and receive Botox injections on my PD dominant left side every 3-4 months for my dystonia . I guess in the big picture it’s not a lot of meds for how active i try to be. Sometimes for a 98lb , 5’2 woman it sounds like a lot. Take care.

[Kia17 in reply to Kwinholt]

Hi Kwinholt

Please can you tell me more about your dystonia and Botox treatment?

Do you have dystonia when you walk fast or while running?

Many thanks

[Kwinholt in reply to Kia17]

Hi Kia, I have dystonia everyday if I don’t stay on schedule with my cd/ld but the Botox is an added benefit to where the cramping and freezing of muscles are not as intense . Botox helps me but I I’ve been told it’s not helpful to everyone. My dr injects the bottom of my foot , up my shin because my ankle freezes sideways as well. My toes and foot depending on the day can either curl under or freeze straight up. Hope it helps you. Karen

[Kia17 in reply to Kwinholt]

Karen

Thanks very much for your quick reply.

With the Botox injections do you still have curling toes?

Kia

[Kwinholt in reply to Kia17]

Kia, yes at times especially the evening if I’ve ran a lot of miles and also been on my feet at work all day. Certain shoes (heels) can create some cramping as well. The Botox for me just helps it not be so intense. And with Botox it’s not a forever (long lasting) antidote as well. For now it’s helping me and has for the past 5 years but may not be so in the future. Karen

[Kia17 in reply to Kwinholt]

Thank you Karen.

Kia

[Kwinholt in reply to Joy-love-magic]

I also use a 4:1 ratio of cbd/THC oil spray. Forgot to add that in 😊

[delboy381 in reply to Joy-love-magic]

Hi Joy If you didn't read books by Joe Dispaneza I recommend to you to read you will find the answers there belive me.That's all I have to say God bless you.

[FMundo in reply to Joy-love-magic]

If you are in pain and have concerns about drugs' impact on kidneys, I wonder if you've considered the use of marijuana to help with the pain? I have collection of articles that might shed some light on the medicinal use of the drug if you have an interest.

[Motherfather]

welcome johnny boy.im another johnny or john or jackie or in places here in australia i was called irish.welcome to our pd club every one here are very nice people..everyone here will help you as best as they can.regards.

[JANVAN]

Welcome Johnny !

This forum will be a great help for you, as it was, and is for me.......

Costantini, Hinz, Lonnnie Hermann, John Gray, John Pepper, CBD an/or THC, Vit. D, 5-MTHF, Coconut oil, Mucuna, Mannitol.........

You can find all really objektive (and so also what do throw away !) information about it !!

[Sleeplessparki]

Welcome Johnny,

Welcome to the club!! I was the PD class of 2010.....almost 8 years later still kicking and active!.

[Joy-love-magic]

Wow I didn’t know so many other people got it young like me, I was diagnosed at 49 but I had signs of it for years before that. Welcome aboard Johnny !!!)

[kgold]

Ironically, my husband (the PwP) had blood work drawn Mon & Tue. The lab tech on Mon, looked 30ish, had an essential tremor, and the lab tech yesterday had PD. She looked late 30s/early 40s. Had 5 kids. How are people this young getting these conditions?

Anyway, Johnny, wishing you well. Clearly, you are not alone. A lot of info and wisdom from the people in this group.

[Erniediaz1018]

Welcome Johnny I'm Ernesto diagnosed in Nov 2017 I'm 49 and had symptoms over 4 years prior to that but yes like you and many of us was in denial and still at times don't want to accept it. I'm in NJ in the U.S. How about you? JANVAN gave the best summarization for you, I have tremor dominant PD on my right side I take no meds just 15 herbs a day, mucuna, vit d, zinc at times and recently started taking a b1 combo after some injections of it that immediately stopped dyskinesia (I have yet to report the group on this), but I have no other symptoms anymore thanks to the herbs and mp (mucuna pruriens) etc. except tremor on right arm and some freezing on right leg. Welcome, nice pic thanks for sharing.

[bibsie in reply to Erniediaz1018]

Hi Ernie,

My husband has PD but he's not yet taking meds. I've ordered Thiamin 500mg capsules and I ordered MP in powder form a couple of months ago. When my husband took some (probably close to a half teaspoon) he thought he was goinv to die: dizzy, pounding heart, weak, nauseous. Clearly it was too much! Do you have a doctor helping you decide how much of what? I think my husband should try MP again before Sinemet but his MD is very conventional. We need help developing a regimen. He has tremors, aches znd pains, micrographiz, etc but otherwise he's doing well. Boxing and biking 4x week. Where did you order MP and how much do you take?

I hope I can ask these questions on this forum.

Thanks

[Erniediaz1018 in reply to bibsie]

nutrivitashop.com/search.ph...

Yes similar happened to me, I took too much couldn't sleep, nauseous felt crazy, but I now take 1/4 teaspoon in a squeeze of lemon for better absorption. Yes you can ask these questions here were not doctors were just people going through this together glad to be of help. Don't give up this ailment is a roller coaster ride so hang on throw your arms up and scream at times it makes the ride bearable.

[ddmagee1]

Welcome, Johnny! I'm sure you'll find plenty of info. and support from the people with PD, in this forum. It has helped me, a lot.

[rodrickp411]

Welcome Johnny,Yo will definitely find the good folks here very supportive and helpful. Altho Im not very outspoken here I find myself here often and it has been a blessing .

[Lionore]

Welcome, Johnny, this is a wonderful group. I absolutely credit the folks here with my minimal progression of my PD since diagnosis three plus years ago. Here we get not just encouragement, but suggestions for actions that we can take other than or instead of simply taking prescription medication and accepting that PD is inevitably progressive and incurable. We aren’t physicians but I believe that the support of others is so important.

[Don_oregon_duck]

Welcome Johnny to this free on line community where we pay a steep price to be qualified for the contributing member designation. Don

[justhavefun2]

Hi Johnny! Welcome! I was diagnosed in February this year at age 57 with bradykenesia type Pd on my right side and micrographia. I am currently unmedicated, still working outside my house and trying to decide my best course of action. This group is terrific! They are quick to offer advice on even my most basic questions and to share about what works best for them. It’s nice to know that we’re not alone in our struggles. Again, welcome!!

[Kia17]

Welcome to your community Johnny.