How long have you had parkinson's and are you still able to walk?

has anyone had parkinson's more than ten years and still able to walk? I am newly diagnosed and don't know what to expect. Thank you

34 Replies

  • Hi, I have been dxd for over 12 years now & on good a day I walk in a normal way. I am a bit wobbly & tire very quickly & my feet have started 'freezing' ie sticking to the floor & getting stuck like a statue. I am sorry you haven't been much information or support up to now. Depending on where you live there is a range of aid services & support groups. Your main problem will be that PD is unique to each of us - different symptoms, different responses to meds & treatments. It would help us to help you if we had some basic information eg your age & gender, where you live, how long you have been dxd & how you were dxd, what meds you are taking, etc & please remember while you use this site YOU ARE NOT ALONE.

  • Hi, thank you for the response. I am female and 58 years old. I was diagnosed in January of this year. As i look back i have had symptoms for a while. I have shaky hands sometimes and feel like i am swaying when i walk but everyo9ne tells me that i'm not. i am on sinemet for two weeks now. And don't feel any different Thank you, Donna

  • Would anyone happen to know of a support group in Newcastle? I'm moving there in July.I'm overseas now and get no support. I know how it feels

  • Newcastle, Indiana?

  • No sorry uk

  • Yes I'm still able to walk well & I was diagnosed over 13 yrs ago & I'm 59. I owe it all to Rock Steady Boxing which I've been doing for 10 yrs. Sometimes if I'm tired my leg drags and lately I've been walking on my toes once in awhile which I don't understand but it hasn't been a problem.

  • Laglag the toe walking is interesting. I have come across it before and just yesterday was discussing it with a pd boxing 😊friend. Her physio had given her exercises focused on the archilles tendon are. Could it be due to shortening of the archilles tendon I wonder?

  • I too am 59 and was diagnosed when I was 38. I just started with the Rock Steady Boxing but have been very active my whole life. Exercise is the only thing that will slow it down. You have to do something EVERY DAY.

  • Where do you live and what meds are you on?

  • I'm not sure if it would be the Achilles or not. I'll have to ask my neuro & see what she thinks. Thanks for the suggestion. My chiropractor says my hips are usually out of alignment which causes my one leg to be shorter until he does his magic. I see him once a month & he does wonders for my back, hips, and neck. He doesn't "crack" your bones like some do. One visit not long ago, he massaged/rubbed someplace on the inside of my forearm & my tremor stopped for about a day or two. My tremor isn't real bad most of the time but it was that morning. C/L will generally takes care of it. I need to talk with him next time & have him explain how he did that & share with all of you.

    So you do boxing also? Do you find it helps?

  • I am 45 and was diagnosed with YOPD at the age of 35. I am still able to walk normally when my medication is working. If my medication is not working, I need assistance.

  • 11 years and can still run. Not jogging but all out running. I am 63.

  • Baily, from running do your legs ever "burn " at night from over exercising?

  • No i don't get sore and i recover very fast

  • New at PD and Senior Games/Masters gold medalist in sprints and hurdles until few rears ago, I guess I over trained in trying to make a comeback at age 76. Could use some guidance. I use Mannitol and Mucuna pruriens fairly well in avoiding meds and uninformed doctors. Thanks, Tom from CALIF.

  • My husband has had PD for 20 years ( 64, now ) and he still walks without assistance. He did have DBS surgery and I am sure that helped a lot . Everyone is different and medications work differently on people. I hope this helps. All the best to you .

  • My husband was diagnosed over 11 years ago. He now finds that he has only about half an hour of 'on' time for each dose of Sinemet he takes. When the Sinemet is working, he can walk but as it wears off, his thighs and torso are unable to support his weight, his posture is bad and he sinks down as if 'walking like a monkey'. Consequently, when we travel he has to use a wheelchair but doesn't need to use it when we're at home.

    He doesn't shuffle or have episodes of 'freezing'.

    His tremor is now beginning to bother him so it would be good to find out from laglag what it was her chiro did to her forearm to help with the tremor! Also, like laglag, my hubby has one leg longer than the other and is very misaligned. This has been the case for the 40 years or so that I have known him but has become worse since having both knee joints replaced. Hubby is presently being considered for DBS but is not keen as he doesn't feel the benefits outweigh the risks.

    As I'm sure you have read previously dmariel exercise is key in order to keep PD from progressing too quickly. I think my husband could do more, but then I am not the one with the diagnosis. He does Qigong, Pilates for Parkinson's & a couple of small walks per week. He suffers with pain in his lower back, probably due to his posture, which makes walking for any length of time very difficult. It is a real shame we do not have Rock Steady Boxing over here in the UK as I think that would be a great thing for him to try.

  • glenandgerry. I go to my chiropractor on the 28th. I'll make a note to talk to him. One thing I would also suggest, after talking with his doctor, is Krill oil. I believe it extended my "on" time a little. I take 1 500 mg capsule a day.

  • glenandgerry

    I went to my chiropractor today & I asked him about what he did for tremor and he showed me the spot(s) on my forearm that he worked on, but I don't know exactly how to explain it. He takes his fingers and presses down and kind of massages the areas with a deep pressure. I just decided to see if I could look something up on the internet and just found this site.

    Pull this website up and look at the diagram and the acupressure points he used for the tremor was LI 11, TW 5 and LI 4.

    Print that diagram out & take it to your chiropractor and show him these points and hopefully he'll know what to do. It didn't eliminate them for good, but it helped calm them down.

  • Thanks so much for this. Looks as though I've some homework to do! 😊

  • My husband has had Parkinson's fir nearly 11 years, plays golf 4 x a week goes to the gym 4 x a week doesn't gave a tremor but had balance and stiffness problems , shows no sign of needing assistance when walking. Exercise is essential, use it or loose it !! 😀😀😀

  • Think positive and exercise, exercise, exercise. I havve been diagnosed with Parkinson's for 12 years. I walk without cane or walker. I credit exercise.

  • I'v had it for about 10 years. I can still walk but very slowly. The muscles are fine but the freezng and hesitating are not. I used to fall much more often than I do now because I use a pair of sticks or poles or a rollator.

  • I was diagnosed 11 years ago and have worked full time as a Nursery teacher until this year. I am considering early retirement; I am 57.

  • I retired at 56, 3 yrs ago & it helped a lot by taking stress away.

  • I was diagnosed 11 years ago and still walking. I get tired more quickly now and then tend to shuffle AND.... sticking/freezing becomes a nuisance.

    Important note: exercise as much as you can. Learn the Tango. Seriously, it helps.

  • My husband Geoff was diagnosed more than 12 years ago (at age 57) and he can still walk, usually for miles. If he hasn't walked for a few days, then he may walk like he's very drunk, but he doesn't fall down. After a few days of walking daily, he becomes straighter and finds it easier again. So it is always worth persisting.

    Most days Geoff also does some weight-lifting and hundreds of push-ups. He recently gave up Karate after getting his 7th belt and losing interest in going further, assuming he would never get to black belt level. But he usually manages every physical task he puts his mind to - including heavy gardening (digging, lifting, chopping trees, etc) - with his 'can do' attitude. We agree with everyone who says exercise is essential, it really is with PD.

    If you're like us, the information you're finding online may be extremely depressing. I'd like every newly diagnosed person with Parkinson's to know they should ignore all negative predictions and know there is a lot they can do to thrive despite PD. (Just look at Michael J Fox who was diagnosed in 1991.) The mind is a powerful instrument and if it believes negative information, the body will follow. On the other hand, if you decide you won't let your life be ruined by PD and take some simple steps to help yourself, you may find, as we have, that you can actually thrive despite PD, and surprise your doctors and neurologists with how well you're doing.

    I won't say it will necessarily be easy, but you should never give up because there are lots of ways around the challenges that PD might throw in your path. I wish for you strength of mind and a positive outlook. There are lots of reasons to be hopeful.

  • Thank you for the nice note. I am trying to stay positive but i am scared, every day i am waiting for "it" to happen. I am going to join a gym. Thanks again!

  • Yes. I was diagnosed over 11 years ago and I can still walk. Most days I can walk at a good pace. Please don't be scared. Every case of Parkinsons is different and I can say please exercise as much as you can. I have just started Tai Chi and am hoping to start Pilates shortly. You will pick up hints on how to cope as time goes on. Try to remain positive. Build up a good relationship with your Parkinsons Team and do not be afraid to as them if you have problems. Good Luck. There are a lot of people on this Site who can help you.

  • Court i am happy to hear that you are still walking. Thanks for the nice note.

  • I was sorry to see your question.. You should not have to live with uncertainty, yet the very fact that many of us ask the question shows how badly we are informed. The work by Parkinson's UK and European Parkinson Therapy Centre to get free access to a program which you and family can attend, in a pleasant location at time of diagnosis is essential to stop misunderstanding and give a road map of how to maintain quality of life.

    The UK program (called first steps) is being expanded into other areas. The European Parkinson centre in Boario Italy has ben around for nearly 4 years.

    The sad fact is that few of us are correctly informed on how to fight Parkinson's, and yes you have many years walking ahead of you.

  • Hi Alman, i am from the U.S. we don't have such support as that here. Thank you for the note.

  • have PD symptoms for 30 years, no smell, pain in back ,toe pain, weak legs,swallowing problems, constipation, however I have no problem walking. actually,THE MORE I walk the better I feel. walking is the best therapy you can use, the faster the better,along with dally exercises

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