How fast does PD progress?

Hi all I was diagnosed 2 years with YOPD (Age 35) it mainly affected my right hand extremely dystonic moved in to my right foot/walking and the last couple of weeks it feels like I am slowing down on my left arm... I have a slight tremor.

I take 4 x Stalevo per day at 4 hour intervals and if needed I can add 2 x Dispersable Madopar when I feel a slow down... The medication helps when I take it although it can take 15/1hr to get in my system and lasts 2 1/2 to 3 hrs... Is that normal?

Also how fast can PD progress like in my case move to the other side of the body? I know it differs in different people but what is other peoples experiences?

Trev

14 Replies

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  • I don't think anyone can give you an answer that is going to be very meaningful to you. Because as you said, everybody is so different. I was diagnosed in July 2011, and haven't taken any PD meds yet. I feel like that means I'm progressing pretty slowly. Everyone on this forum will probably tell you the same thing, get as much exercise as you can and start doing a lot of research. One of the other truths is, some meds will work for some people and not others just like some supplements will work for some people and not others.

  • I was 46 when diagnosed 14 yrs ago & still doing fairly well. I take 4 Sinemet, 2 Azilect & 2 Amantadine per day. Supplements: D3, krill oil, Protandim, and 2-3 Xocai chocolates & 2-3 tbls. of coconut oil per day. I go to a chiropractor once a month. Also, I've been doing Rock Steady Boxing 3 days per week for 11 yrs. which has helped a lot!

    rocksteadyboxing.org

    Keep fighting!

    Debbie

  • I also take Emergen C everyday for rigidity & pain that I had in my thighs & groin. Everyone is different, but coming to this website helps you to learn a lot about different things you can try & what is helping other PwP's and what is not.

  • Hi had pd 20 years now still work 5 days a week as a site manaher the one thing I can tell you is to keep your brain as active as you can it's the only thing that works

  • Interesting . Thanks for posting.

  • My husband has PD for 20+ years (young onset). Had DBS for dystonia about 13 years ago and still going strong. Progression is different! Don't give up! Hope you have a good neurologist and use a movement. Disorder clinic

  • I've only been diagnosed 3 years, but I started losing my sense of smell (an early symptom) over 25 years ago. I still respond pretty well to Madopar & Comtan - knock on wood. Your drug timings match my own: about 1 hr for first affect - then lasts about2 or 2.5 hours.

    Best of luck to all of us!

  • I was diagnosed ~5 years ago and have had barely noticeable progression, it may just be I am fortunate (relative to others who have PD). it also may be because I take Azilect which my neurologist believed slowed progression. He seems to have been right. I would suggest you add Azilect.

    Second, get into a very active / intensive exercise program. That is the best way to slow progression.

  • I also take Stalevo 75 MG-5 times a day with Azilect 1MG- in the morning. PD progression depends on you totally, you can slow it down by exercising, being pro active. I can't tell you enough how exercising such as dancing (Dance for PD) , Tai Chi , yogaor simply walking can do wonders.

  • I was diagnosed in feb. 2001. had minor symptoms by then. Took me 4-5 years to start feeling the desease, it change my social lifestyle, and work as a graphic designer

  • Hey Trev I'd like to keep up w you. I'm 37. Diagnosed a little over a year ago. I think I've felt symptoms for about 2-3yrs now. I take the lowest amount of Azlilect and that's all as of now. My fine motor skills in my left hand were slowly going downhill and sometimes a tremor. It too, like you, is moving down my left side. My foot drags some and just this past week my husband notice (and me too) I had a little limp. This is so depressing for me. I live in Houston where the Hurricane and floods are and I haven't worked out in about a month so I'm thinking it aggravates my condition. Anyhoo, I'd love to chat and keep up with you.

  • Hi there so yours started in your left hand and is going into your left foot?

    That's nearly how mine started mine first started with my right hand I could grab things but couldn't release the muscle to drop things it progressed from there.

    So yours is still one sided?

    I am wondering why mine is starting to affect my other side mainly slowdown.

    I am in the UK so see a consultant once every 6 months but she has referred me to a MDS clinic due to my age and could be put forward for clinical trials... I also see a PD nurse every 6 months and can ring her anytime.

  • Forgot to add my first appointment is October with MDS.

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