The progression of Parkinsons

Whilst I fully understand that each case of Parkinsons is different and that it is impossible to predict how individual cases will progress, I have noticed on this site that a number of people have had Parkinsons for a long time without its progressing dramatically.

I should say now that this question in no way relates to myself and that I know that those with a tremor are completely different to those who do not have one.

However, I am interested in people, some would say nosey, and I am posing this question purely for this reason and for no other.

I should say that it is 3.30am and I am awake and bored, so please accept this question for what it is, with no hidden agenda.

15 Replies

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  • Sue, I'm not sure what you're asking except for a way to pass the time, but I also have wondered about the different rates of progression and order of symptom appearance. It would be interesting, even among our little group, to compare things like order-of-appearance of symptoms, date of diagnosis and many other items which differ in each pwp. I wonder how many would participate if you asked the question as a poll.

    In my own case history I am unaware of any other reported cases in my family but was often and heavily exposed to insecticides in my youth. I lost my sense of smell in the 1970s, developed "Parkinson type" nightmares and became wierdly emotional in the late 1990s. Then nothing until August of 2010 when tremors and other symptoms began. In less than 2 years I have developed most of the classic symptoms. I would like to compare that progression with others.

  • Hi Ronn. How well you know me! My question was partly to pass the time and partly because it interested me. Your thoughts are really interesting and much better than mine! Sure a type of Polll would prove interesting.

    My question came after a bad bout of sleeplessness and I should have left it where it came from, in my mind.

    Sue :-)

  • Court you are proposing comparing progression right? My dilema with doing that is that i dont think there is just one type of Parkinsons so how would we make any meaning out of the results. Could there be differences in manifestation and progression between all these differing groups? For instances we know there are differences between young onset and older onset.

    And what about different causes leading to different types of the disease with different progression. Causes could be toxic chemical, head injury, infection, drug induced, genetic.

    My way of explaining this to friends is to use an analogy with cancer eg breast cancer. Recenly in the news was a report that a major study carried out by Cancer Research UK scientists could revolutionise the way women with breast cancer will be diagnosed and treated in the future, by reclassifying the disease into 10 completely new categories based on the genetic fingerprint of a tumour.

    Having said that it is still interesting to read peoples stories like Ronns. I just think we cant draw any conclusions in the end because of all the many factors involved.

    Perhaps the large UK study just begun will give us some of the answers. That would be exciting.

  • No, I was not proposing trying to compare people with Parkinsons as I am sure this would be too difficult, if not impossible, to do.

    I obviously did not express myself clearly. What I wondered was how long people with Parkinsons had remained at the same or a similar stage.

    I know from reading posts on this site that some people have found their condition has not really altered for many years. By the same token, others have found their condition progressed more quickly

    This was not meant to be a comparison, being something I am interested in..I certainly do not have the expertise to draw any conclusions, nor would I try to do so.

  • I am sorry if my answer was broader than the intended scope of your question. I, like you, am interested.

    I also read, with interest, the responses of PatV and Raven, made to this question. They each expressed, if not a conclusion, at least an opinion that general anesthesia is a culprit in Parkinson progression. These opinions are based on their personal experiences. It made me recall my information related previously regarding pre-tremor symptoms which came on in the late 1990s. (I had coronary bypass graft surgery, under general anesthesia, in 1995). Not conclusive but, to me, interesting.

  • I may have answered. I did not progress until I injured myself. My theory: general anesthesia eats your brain and helps PD progress. Also some antibiotics. Could be coincidence but I'm worse for wear!

  • p.s. 10 yrs with PD no tremor dragging left foot around. Dx 8 yrs ago. Until 2-3 yrs ago most people could not tell I had it except I complained so much about side effects :(

  • I completely agree with the anesthesia, etc. eating your brain away as I am almost positive this happened to my husband. He was hospitalized for a couple of times and seemed to get worse after each visit.

  • I've also wondered about the progression as I have seen many people who had had PD for a long time while others not so long. I guess it depends on the type of PD and the person. My husband was diagnosed in 2007 (don't know how long he may have had it before then) with shuffling feet and a small tremor in his hand. Now after 5 years, he has a really hard time walking and has developed PD related dementia which has left him with no cognition or language ability - it is so hard to understand what he says. So I guess in 5 years his has significantly progressed compared to others. That is a question I will pose to the dr. next week.

  • I just attended a seminar with my neuro on the subject of PD and cognitive problems. There are meds and therapy for this. Hope he gets the help he (and you) needs.

  • My PD was diagnosed in 3/2006, at age 60----I have a strong family history--my maternal grandfather, his son were diagnosed and my mother exhibited many signs tremors, small inlegible handwriting, frequent falls, in her later years-LEWY bodies dementia and my grandmother had a niece who also has PD. Envuronmentally--lived less than a mile from a landfill from 1980-1993 and lived in the mid-west from 1993-2003. Had wrost surgery in 10/2003 and developed a tremor in that hand 4 weeks later. I was in healthcare and continued to work until April of last yr when I retired ay age 65. Fatigue is probably the biggest annoyance, have more good days than bad---remain very active--cooking, cleaning, decorating, sewing---as long as I pace myself and take my meds---I am not ready to give-in to PD.----Court, not sure if I answered what you were looking for or not but we have something in common--frequently up at 3AM

  • No arm swing tremor so severe I had to sit on hands,could hardly get food to my mouth,barely able to write .Years on medication no tremor arm swing wriiting all returned marvel is I feel better even though I know It's a degenerative illness.

  • Really pleased for you. Just what I needed to hear. Your meds must really suit you. Good luck.

  • I have a couple of reactions to the topic -- I do not have tremors as I think of them, but i have constant motion. My g'daughter says that hugging me is like hugging a rocking chair. I saw a video of MJF and noticed that his are similar. Any one else?

    My other q. is scarier to look at, the last 5 days or so my symptoms have gotten worse, markedly. I'm hoping they will diminish as they presented. Any info?? I agree with you, cow mom (what handle) fatigue is the bummer. It is often incapacitating. I tell people that

    i cannot participate in anything that relies on me because I may have to take a nap, NOW

  • Hello, new to the group. My name is Colette.

    My husband Kippy is 58 years old. He was diagnosed in 2011. He had symptoms that we did not know were PD for about 8 years before he started tremors. It was a sad story that caused a divorce for lack of a proper diagnosis, but I am happy to say with two young kids, we re-married when doctors told us there was actually something wrong.

    No one told me that Parkinsons can change a man so much. He stopped talking, his face froze, he stopped communicating, he couldn't work. Who was this man I was married to? When we divorced, he couldn't comply with setting up custody arrangements and "hid" them at a sister's home I didn't deem "acceptable". The police couldn't find him, but I did, and because I was irate with him and in fear for them, it ended badly. I lost my cool and instead of him getting in trouble, I ended up with a disorderly conduct on my record. Wow. People just don't understand what I've had to deal with. That was in the beginning...

    Needless to say, the handsome, sexy man I love and father of my two children is sick, and there is nothing I can do to help him. I am 47 years old, and have two beautiful kids to raise on my own now. I am a secondary English and Art teacher whose school closed in 2011 ( with a disorderly conduct on her background check now.)

    So far, subbing is all I can find. Although he is a Marine Corp veteran, Kip can't get disability yet, ( going on to years which is awful ) and he is too sick to work for more than a couple of hours without having to lay down.

    I think he is progressing fast, but I don't know. I wish he had more energy to do the things he used to, but maybe I'm dreaming. The kids miss their father terribly.

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