Do all PWP’s experience all the stages I’ve read about? It’s been 10 years since my dx and I still am in stage 1. Is this unusual?
The stages of Parkinson’s : Do all PWP’s... - Cure Parkinson's
The stages of Parkinson’s
Written by
Kt088
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44 Replies
•
You're either lucky or must be doing something right! 😉
I think I do a lot of the right things and have done from the start, and I also have a strong faith and believe that God’s sustaining grace must be upon me as well. I am miserable with this disease a lot of the time but I really have no cause to complain in comparison to the stories I’ve read from other PWPs. It’s a mystery to me as too as why I’ve done so well all these years. Apparently I’m progressing very slowly. I was told a few years ago that PWP’s that presented with a resting tremor as their main symptom tend to have a slower progression but I don’t know if this is true or not. What stage should I be in at this point? I’ve read here of another lady who has had PD for much longer than I and she states she is still doing well in stage one, still just taking three sinemet pills a day. I wonder what she does to benefit herself. I’ll have to locate her and ask.
Do you exercise as hard as you can? That will help. Do you have much stress? If you don't, you should not progress as fast. If you're younger when diagnosed that usually helps. I believe it's because the older you get, the less you feel like moving, even if you don't have PD. I was first diagnosed in 2003 at the age of 46. I was just looking at the 5 stages a couple of weeks ago and wondering where I would fall. After 17 1/2 yrs I'm just now starting to get in stage 3. I'm starting to have some balance problems and walking a little slower. When diagnosed I asked the doctor how long he thought it would be before I got really bad and he said 7 to 10 years, so I think I have beaten that #, close to doubled it. But, every PwP is different. Sounds like you are doing good!
Keep fighting! 🥊
>"What stage should I be in at this point?"
According to whom? Why ask this?
The chart of outcomes posted by rescuema above tells you all you need to know - some people maintain good quality of life for decades. It seems that you are one of those. Keep doing what you are doing. The only modification I would suggest is to cultivate happiness while abiding in the divine bliss of God’s sustaining grace.
Are we to presume that those who do less well have been denied the sustaining grace of The Lord then?
Nope, Gods sustaining grace is there for everyone, Up to you to abide in it or not.
Free Will
Every body talks about stages so I thought I would define them from my perspective
Stage one: Seem to be always tired, difficult keeping up. You don't know what is going on. You are not as much fun anymore . You MD thinks you are whiny and that you are faking that tremor in your hand and does not know why you don't walk right. Frustrated and angry and confused and stressed out. no help any where, thinking retirement.
Stage two:
You have finally seen a Neurologist and he has diagnosed PD but says that you dont need medication yet. Go home look up PD . Now still no meds situation same but now your scared and you wonder how bloody bad does it have to get and how hard will it get. Frustrated confused stressed angry and scared,spend most effort trying to hide symptoms from boss , friends family .
Stage 3
Second visit to Neuro and he prescribed medication. Well , son of a gun ,it works, Build a picnic table , paint the house, retire , resembles pre-stage one and lasts several years but meds increase and symptoms are increasing, still life is good . You wonder if you have beat this thing and think you are still in stage one but friends and family and me know otherwise.
Stage four
This stage sucks . I would avoid it if possible. More meds, exercise , de-stressing, rest, more rest, every indignity is piled on top of a huge indignity pile. People keep asking how you are ( I wish they would stop ) . The world is becoming very small, garage, back yard, house , internet. You have people working for you doing things that you were supposed to do, cut the grass etc . Frustrated and tired but no longer confused, angry or scared, happy . maybe numb. Stage lasts a long , long , long time. Grit you teeth, say your fine, grin and bear it.
Stage five
You choke a little on some food , it gets into your lungs , pneumonia infection sets in, you are taken to the hospital for a two to three day stay , not a long time and then stage five is over.
Great post GB.
• in reply toGymBag
I highly recommend at stage 4 that you add some medical marijuana and a very comfortable recliner Speaking from familial experience
I love the logic of the God Squad. He gave you PD but if you beg hard enough he’ll take it away. Sounds like classic abuse to me!
God gives people PD ?? Who would have thought it. and to think that the last time I spoke with him , I asked him to take it away.
• in reply toKt088
Are you on any non-PD meds that could be slowing progression? Exenatide or ambroxyl?
Hi I was diagnosed 5 yrs ago and told I have it very mild. I'm on 1 sinemet a day. However with the pandemic I'm am isolated and haven't been able to see family. I've been extremely stressed. Since January I've got what they think might be frozen shoulder. It's really disabled me. They aren't sure if it's related to the disease. I have really slowed down too
You need to up your dose of sinemet! It is obvious that one tablet a day is not touching the symptoms it WILL HELP namely anxiety, slow movement, shoulder pain. You will be surprised how much it will help. You may have had mild parkinsons (whatever that means) but it has progressed and your meds have stayed stationary.
I think you are right. My neurologist has mentioned increasing the dose. I'm seeing a nuero physio in 2 weeks
• in reply toKaykaykay123
I had daily shoulder pain and decreasing range of motion but it has improved. Other things have gotten worse but oddly enough my shoulder is almost completely normal again. I’m not certain why but I believe my anti-inflammatory diet and addition of fish oil has at least helped. No gluten, no sugar and almost no dairy and my shoulder is much better. I recommend trying it.
Kaykaykay123• in reply to
Thank you I will
Hikoi• in reply to
CCI just took levadopa - no diet or supplements, and that fixed my aching shoulder I’d put up with for 8 years. Its because your muscles have dopamine which they need. Studies show that about 40% of people with PD get shoulder pain.
I like to think of having Parkinson’s as a chronic ailment, where each individual person, has a different course of symptoms, and stages, sort of like I think of snowflakes. Each snowflake crystal is a little different, in design, few, if any, are just alike. After studying up on the process of neurodegenerative disease, I can understand why this is so! The substantia nigra part of the brain, anatomy, where the degenerative process begins, is affected gradually, with neuronal death occurring in different parts of the substantia nigra, and the spreading of the disease, is revealed by the many, different symptoms that result! This is but just a rudimentary explanation. I won’t go into the miss fold process or the Lewy body connection. Suffice it , to state that the slowness, and/or rapidity of the disease manifestations translates into the stages of having PD, that are frequently referred to, by movement disorder specialists, other neurologists, and other health care professionals.
Maybe it depends how early on you get diagnosed. Some people probably see GP as soon as they feel not right, and others leave it until they are almost disabled. Not sure date of diagnosis means much. My husband was diagnosed 3 years ago but he hasn’t been right for years. I just thought he was getting very lazy and boring and cantankerous but I think he was just becoming apathetic and things were getting so much harder to do so he wasnt enjoying them. If we had been on to it when he first started behaving differently and changed lifestyle then he might have delayed it.
In my case, that’s how it was! I had symptoms, for about 8 years, before I was diagnosed. It sort of crept up, slowly, so to speak, and apathy was, also, a problem for me. Everyday chores were getting harder for me to do!
Thinking about the future and trying to predict at what stage I will be in x number of years is a losing proposition.
Everyone I know in my age group 70’s has something going on health wise or something else that is difficult be it relationship, finances or just concerns about the world. Our bodies change but more and more if I am grateful for what I can still do, and of course grateful that PD didn’t become an issue until my sixties. PD may be staged by doctors going in the wrong direction but our spiritual growth can be staged heading ever upward as we focus on letting go of what is not important.
Well said. We can't control the physical. For me, a lifelong control freak, accepting that has been a huge part of my spiritual growth. More acknowledging than accepting. Who we are transcends our physical limitations. I remind myself of this daily. It is difficult and energy-consuming, requires much vigilance and concentration.
Would you kindly share what the stages of PD are? I’m 7 years since initial DatScan dx. Then we can compare notes.
Here is a link describing the 5 stages of PD :
parkinson.org/Understanding...
I have seen stages 4 and 5 and it, to me, as an outsider looking in, was like looking at a completely different disease than the first three.
Art
I have to wonder if some of the stage 5 symptoms are medication side effects in some people as they sound so similar. I wonder if there is a similar list of progression in people from countries where no medication is available except mucuna beans. So you can see the disease progression in its natural state.
ccl,
I understand your thinking, but I can think of a lot more things to hope for in the interim, like a cure or a new and drastically better gold standard than C/L! 😊
Art
• in reply tochartist
I’m sorry Art. My negativity was unhealthy and not constructive. Therefore I deleted my response.
chartist• in reply to
ccl,
Well, when you clearly know what lays ahead if you follow the current standard of treatment and nothing else, it seems completely understandable, but you are taking that knowledge and trying to turn the tide in your favor and that is taking the negative and trying to turn it into a positive! Seems like a good choice to me! Science is evolving and the recent FMT study is a positive example imo!
Art
• in reply tochartist
FMT? What is FMT? Science is evolving Art. It felt good to read that reminder. Been down.
At the neuro today they had me do the MOCA test. I’m 45. I can identify a hippo and draw a clock. The testing is so unsophisticated it’s ridiculous.
chartist• in reply to
You must have been away for a moment :
healthunlocked.com/cure-par...
healthunlocked.com/cure-par...
Art
Some people progress so slowly they end up eventually passing away due to a different cause. Others, like my poor Dad, start with slow progression but do not sustain healthy life choices like diet, exercise, stimulation and progression picks up pace. It would be wonderful to learn from your success. Anything in particular you are doing?
Good for you! I'm better now than I how was over 5yrs ago! Just enjoy yourself!
Its good to hear of someone with PD for 10 years with no worsening of the condition. I was on Sinemet for two years but tended not to be consistent. I switched to Rytary and I remember to take meds 80% of the time. But I don't have 'off' periods. I have a dominant hand tremor not affected by meds. Recently had injections of Botox for the tremor. I don't have freezing-in-place periods. I don't have slow movement either. I had a DAT scan that confirms PD. But don't feel any different from Rytary.
Maybe you and I have mild versions of PD.
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