What stage?

I've read a little on the 5 stages of Parkinson's (very, very little) trying to determine which stage in the progression I would be considered. I guess that is something I should ask my Neuro next time I see him or when I finally get to the Movement Disorder Clinic.

What stage are you in? I just naturally assumed I was in Stage 1 since I was just diagnosed but since my tremors are bilateral perhaps I am in Stage 2. However I can walk just fine still...maybe a little bit clumsy...but I am not dragging a foot or anything like that.

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  • Same here, stage 1 with diagonal tremor. Tremor in right arm and left leg.

  • That sounds bilateral to me Roy. I thought once it goes bilateral it is stage 2.

  • agreed

  • Has this always been the case (with both arm and leg) or did your arm or leg tremor start first?

  • arm first

  • I would say I'm still in Stage 2, maybe the start of Stage 3. Here is a pretty good rating scale. After rereading this, I would have to say Stage 2 for sure.

    healthline.com/health/parki...

    In this article, there is something called the Unified Parkinson's Disease Rating Scale that looks interesting. It may be more for a doctor.

  • Thanks laglag, I have been looking for that rating scale for some time. I would say I am a 2 without meds and 0.5 with.

  • Excellent article Laglag. For sure I am in stage 2 after looking at this, but with meds I'm doing really good. I feel so lucky that my body has responded so well to the Sinemet and Azlect.

    I'm curious does anyone's doctor ever ask to get off the meds temporarily just to evaluate where they are in the progression?

  • Since being dx'd 6 years ago I have been off the meds twice. First time was when I stopped the meds for a day so the judge deciding whether I was disabled or not could see me unmedicated. I could barely walk into her courtroom and as soon as the hearing was over I downed a L-dopa as fast as I could. (I won by the way.)

    The second time was 5 days after my DBS surgery this year when I went in for turn-on and initial programming. The neurologist told me to not take meds that morning. Again, I could barely walk and raced for my l-dopa, amantadine, etc. once he was done with initial DBS programming.

    We're still tweaking the programming but getting close to optimal results, I think.

  • No, mine has not.

  • Why do you feel the need to know. Nothing you can do about it. No one can tell you how long to the next stage if you get to the next stage. It would only add stress if you found out you where at stage 3 when you thought you where stage 2.

    Take life as it comes. Put PD in the back of your head. Enjoy the moment.

    My family does not talk about or ask me about my PD. I am the only one who can bring it up. They talk about it when i am not around. My DR. suggested we do this and it works well.

  • Bailey I guess I'm the type of person that likes to quantify things in general. I love statistics and spread sheets and progression charts. Just my innate personality. Not good or bad just me.

  • It is nice to have a reference point. I would like to know do I have 100,000$ in my savings or 50,000$ dollars. It dos not change anything, especially with no interest being paid these days.

    I totally understand your view also. My Grandfather was obsessed about his cancer numbers that when he stopped treatment every one decided that it would be in his best interest if he didn't know his count.

  • My husband has had Parkinsons for at least seven years, only diagnosed 4 years ago. He can hardly walk, needs an indoor wheelchair, can't sleep in a bed uses a reclining chair or would be stranded in a hospital bed, tried that! will need full time care soon but hate the thought of him being 'not taken care of properly' in a so called Care Home. My surgery and his surgery don't communicate, my Carer's help at my surgery is excellent, husband's surgery Carers doesn't want to know! Filling out endless ASSESSMENT FORMS forms for Care Direct is a nightmare, OUR OWN LOCAL SURGERIES AND DOCTORS WHO KNOW US SHOULD BE DOING THE ASSESSMENTS, NOT ANONYMOUS COUNCIL OFFICE WORKERS. AM HEARTELY SICK OF THE WHOLE SITUATION. AND IF THAT'S NOT ENOUGH THE LOCAL PARKINSON'S NURSE NEVER VISITS, AND IS FAR TOO EFFICIENT AND UNSYMPATHETIC WHEN SHE DOES. SORRY, VERY DEPRESSING BUT THAT'S THE FACTS.

  • my mother is a carer for elderly and been for about 10 years. she seems to have good support from NHS. she completes forms about the patient and her nurses and social workers do come. it may be the area you live in? she always keeps to the country-like, town areas and stays away from cities. perhaps she can advise you on what to do. email me on jacqui.osz@outlook.com and i will give her your email address. she only gets back to england in jan.

    i was going to come to UK to work as carer but it turns out UK is not eager to take on people that want employment. i have a psychology degree and am going to come over to study as mental health nurse. so you never know we may meet?

    at least i can really be empathetic, since i experienced everything when my meds were stronger.

  • Hey you folks across the pond at least you have the NHS! Here in the US we are on our own and if you can't afford help it's very, very, very, very hard to get the social services that we do have to arrange anyone to come to your house and help. The situation is pathetic. We mostly depend on our families.

  • apparently so. my brother lives there and medical aid cover is nearly as important as the job. i dont know what they expect people to do when they cant work? there should be a medical insurance that covers your medicine if unable to work. and not one that is expensive.

    that is one thing with UK. because its nationalized it seems to keep costs low and due to them having to pay for everything until br citizens die, it seems they are also more interested in preventative care.

    apparently they pay for vitamins etc. the only thing they dont cover is dental.

    in south Africa my friends son was in a accident and he had to have an brain operation. she was unemployed at the time and the public hospital bill can to R14. that is about $1. the hospitals and nurses in public hospitals are not nice, but the surgeons and anesthetists are generally brilliant. they do internships here and then leave SA.

  • Thank you for your reply from the other side of the pond. Your reply certainly puts things into perspective and I now feel I should be campaigning on your behalf. What on earth do people do when they have no relatives and no money, life must be very difficult and miserable. How selfish we must all seem to you, will try and count my blessings.

  • Fontaine I'm so sorry for the situation you are in. You have my prayers.

  • Hi Theresa, in response to you question about the stages of parkinsons, I'd like to recommend a blog that I find very helpful called Aging, Parkinsons and Me. It is written about twice a week by. John Schappi. It's very informative. I have learned much from him and just this week he wrote about the stages of the disease. I hope it's helpful to you. I enjoy your comments and questions. Diane

  • My thoughts go out to you my heart goes out to you Mary

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