What's normal?: I am struggling to get... - Parkinson's Movement

Parkinson's Movement
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What's normal?

I am struggling to get a reference for what is "normal" in terms of disease progression in early stage PD. Obviously, its the "snowflake" disease, and everyone experiences their own unique version. But there are some "norms"

Royprop regularly refers to the 5 year "honeymoon period", and others refer to themselves as being in it. My first neurologist in Carcassonne said sort of the same (but with typical blunt french bedside manner). "Don't worry - you wont be in a wheelchair (yet). The first 2 stages last about 8 years and are well managed with medication. After that... (gallic shrug)".

Another problem is "after diagnosis". I am about 15 months post diagnosis (15 March 2018, confirmed by Datscan late May 2018). My father in law, strictly, is about 11 months post diagnosis, but he had been visibly trembling in his left arm for at least 2 years before that, and by "diagnosis" had nearly the same tremor in his right arm. He had a classic "pill rolling tremor" during that period, when we as family were telling him he had PD, but he refused to see a doctor.

So time from diagnosis is not the same as time from disease onset. I think I was diagnosed early. In July 2018 I took my Datscan to my UK GP because I wanted to start the process for getting an off-label prescription of Bydureol, something which I think I could work through the system in the UK, but is effectively impossible in France. My UK GP agreed to refer me to a neurologist, but told me after his clinical exam he didn't think I had PD. (Nice guy, but he didn't know what a DATscan was...). Having started on the SPARK trial, I didn't bother pursuing it when my UK neurologist appointment was cancelled.

I note several newbies on here like me, but most (all?) appear to have started some dopaminergic medication (MP counts as meds in that context). Obviously many are also on B1 which further confuses what is "normal progress"

I am interested to know, what is other PWP's experience of the early stages? How much progress is normal and after what time?

TBH my condition has progressed much less than I feared this time last year (and indeed, almost certainly, improved compared with this time last year - which was close to my low point). Especially as it appeared to be racing ahead (I am a talented hypochondriac). Whilst I would be curious to see what a PD med does for my symptoms, I don't remotely need anything at the moment (and the SPARK trial currently prohibits it). Can somebody offer a benchmark for how to measure progression in the early stages?

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I had two uncles with PD, both diagnosed in their 70s, one lived to age 89 the other 91. Both were walking around at the end, neither got dementia. Both died of aspiration pneumonia.

As for your physician with the “Gallic shrug” (gotta love it), MD’s everywhere make statistical statements as if they were fact. The problem is that our psyches are not wired to know the difference between one Sigma and two Sigma deviations. The trusted authority says “you have one month to live”, and the patient drops dead 30 days later.

Like you, I’m 2 years into diagnosis, with 3 years (probably more) history of symptoms. My own opinion is we need to address this thing on all levels: body, mind, and spirit (whatever that means to anyone). Hopefulness is a stance we can choose, valid and IMHO highly recommended.

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I am also curious about the "honeymoon phase" my Husband (age 55) was dx a little less than 1 year ago. we have chosen no meds - working on diet, workouts, HDT B1, vitamins... kind of a lot... not much change in symptoms - right hand tremor is a little worse but rigidness is a little better. dystonia in toes - no change. I am Not really sure what the "honeymoon phase" really means... for him or for anyone. Not sure where he would be if he chose pharma meds - if he would be better off as he could go back to running which he cannot do because of the dystonia? I am glad your progressions is less than you expected - how has it progressed for you after 15 months?

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I should say I am on no meds, and that is not restricting me. I am playing tennis, and skiing, and working out at the gym. Not taking meds is not for me an issue of suffering a bit out of a policy decision to avoid meds. I don't need them. My left pinkie tremors a bit sometimes when I try to hold down the shift key (but not always), my left hand is slow (if I try to drum my fingers to a beat, it shows up very clearly the difference between my 2 hands) so maybe meds would improve my guitar playing...

But nothing is stopping me running.

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I'm glad you posted this, Winnie. My experience is much the same as yours...diagnosed in the Spring of 2018, not on any medication, and honestly feel better now than I did a year ago. Although I have been pleasantly surprised, having PD seems like living with a time bomb. The upside is that my priorities are more clear than ever, I am exercising intensely, and I no longer take anything for granted, especially my health. I hope those with more experience will share their experiences.

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My husband has been diagnosed for nearly 13 years , he was told by consultant in 2006 that he would probably be able to work for two years - he worked for another 8 years . He didn’t have medication for about two years , then started on Ropinerole- with no side effects! Possibly another two years before levadopa was introduced ( not too sure of timescale), then Azilect was added . Last September the azilect was swapped for Safinamide a newer MAOB inhibitor - not the best experience but worth it. I don’t know if John’s progression is typical of someone diagnosed at his age or who is non tremor dominant. I do think his health is better now he has retired, we say his ‘job’ now us to keep himself as healthy as possible- diet , exercise and medication 😀

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Thanks for sharing. How old was your husband when he was diagnosed?

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He was 49 years old , a headteacher in a secondary school 😀

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Thanks for sharing

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You started this thread providing the only true answer -- we are all snowflakes. If someone could describe how you are going to progress, they could describe what the clouds would look like in an hour from now. That said, the motion disorder people and I believe Dr. Laurie Mischley both say that normally a person progresses approximately 35 to 40 points per year on the UPDRS.

My take away from the diagnosis was,' there is no cure, there is nothing to be done' and because I didn't want to take over and dominate my life, I went about my business which was a big mistake. I missed the most important window to take action, to research and make the necessary changes to my lifestyle, diet, etc.

So, the only thing I can offer is what you already know, you are now in the most critical juncture of your illness and by that I mean more the any other time in your life you have the opportunity to impact and slow the progression by pulling out all the stops doing what you know needs to be done.

Somebody once commented on this forum, "Everybody goes down after 10 years." Pretty ominous. I would modify that to, "Everybody who does nothing, goes down after 10 years." This month, I'm 10 years in and consider myself far from down.

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I get your point Marc, but I am not sure I "know what has to be done". There is hardly any universal consensus. That said, exercise, attitude and stress management seem fairly universal good advice. A "healthy" diet (different interpretations abound) makes sense. Also keep abreast of developments and try to back a winner. That was the toughie for me. There is lots of good stuff around, but some are mutually exclusive. If I had pushed for an off-label bydureon, I couldn't participate in SPARK. Back the wrong horse and that is a permanent loss.

I guess, for the minute, I'm happy with where I am, and will ride out my time on the trial before looking for the next options.

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Just wondering what SPARK is. I havent heard of it before.

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Spark is a phase 2b trial by biogen of a monoclonal alpha synuclein antibody known as BIIB054. scienceofparkinsons.com/tag...

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Hi Winnie, this is a great post. I guess everyone wants to know where they'll be post 'honeymoon'. I think its highly individual; lifestyle, motivation, support, diet, pharma meds, cause, age - so many factors come into play. My husbands first signs were in 2010, left pinky finger twitching and reduced arm swing. Now 9 years later he has left hand tremor (not obvious to some), still loss of arm swing (moves if he makes it when walking etc), sometimes if stressed mild tremor in right hand. So yes of course he has progressed, while on pramipexole 2015-2018 he felt awful, was thinking of giving up work, had other symptoms come up - then last year we started the keto diet, dropped pramipexole, added B1 and mucuna and other supplements. Since those changes he 'feels better', if the tremor went and his arm would swing by itself you couldn't tell he had PD. We now basically follow a lower carb med diet. I guess being tremor dominant you fare better? I have nursed one women in her 90's who had PD for 30+ years, only symptom was freezing while walking maybe a few times a week and hand tremor, mentally sharp as anything, only on 4 PD pills daily. Also have nursed a women in her 60's, PD 10 years, terrible symptoms, she had them all, on 20+ pills a day, she had something every 2-3 hours, nothing seemed to work, she suffered greatly. We don't really pay much attention to the 'honeymoon period', it could have a nocebo effect, and you could think why bother making changes for the better as it will all turn to crap anyway, and it doesn't apply to everyone, there is no one size fits all. "Honeymoon Schmoneymoon"

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Thank you, I needed that. 😊

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I think I fare about the same as your husband at the moment. My left arm doesn't swing when I walk (and like your husband, I can fake it) and my left arm tremors a bit at rest in some situations. And since "doing something" (exercise? stress management? med diet? microbiome recovery? SPARK participation? Better weather?) I feel better, and likewise you wouldn't know I have PD. But my first signs were November 2017 not 2010 ! (It really came out of a clear blue sky - 2 possible triggers were an ear infection/prolonged treatments for ETD, and starting Amlodipine. )

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I think Marc covered the bases and said it wisely. I am 2.5 years in from dx and was lucky enough to come across this forum early on. My symptoms however started back in 2013. My only symptoms that have noticeably progressed are tremor and sleep. Not that I don’t experience anxiety, I do as well as very light rigidity and some slowness but don’t feel those have really progressed. gait, posture and strength are fine. But back to the point. After reading many threads here and doing some research I changed my diet, supplements and to a reasonable degree, lifestyle. I’ve always exercised (biking) over the top and believe (with 0 evidence) maybe perhaps that along with diet/supplements, etc has kept my symptoms at bay(some of the time) to lead a relatively normal life. At least for now. Thank you Marc for sharing your profile and to many others for sharing their experiences.

Winnie, happy you asked this question.

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Thanks for the reply. Your comment about anxiety reminds me of another I can tick off. I don't do touchy-feely things like anxiety (yeah right) - but last year, apart from worrying about having a progressive neurological disorder, I was "Lost" a bit - crossing roads, navigating round supermarkets, on the ski slope when the clouds came down. It's a set of questions on my regular PD survey at the trial, and I always mark (truthfully for this year) 100% confidence. But looking back, last year was less. Not desperate - maybe 70% 80% confidence, but I was aware of a "thingness"

Exercise appears to be universally reckognised as a good thing (although a recent post by gingerj speculated about having too much)

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I think you should have complete and total faith that what you're doing is slowing your progression. Keep it up.

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My mother was diagnosed in her 60s and did quite well for about 12 years. At that point she had to deal with other serious health issues which exacerbated her PD. My symptoms started in my 40s and my progression is much different from my mother's. I have more rigidity and a much higher sensitivity to l-dopa. She took it for years without side effects whereas I had dyskinesia almost from the start. My speech is affected when I am low on meds, hers never has been. So, even within a family progression is not predictable.

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Yes - my Dad has serious rigidity and balance problems (He is 85!!) although is not that far more advanced than me (4 years post diagnosis)

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I understand your concerns but it is too early to worry and just the right time to act.

If you are not taking medication for Parkinsons than we can not in any way be sure that you have Parkinsons. The only way that anyone knows that they have Parkinsons is that the PD medication (Levadopa) works. Even then there are deceases referred to as "Parkinsons Plus" that get some relief from the PD meds for a short time. The incidence of mis-diagnosis of PD is very high. I have been diagnosed as having PD for over 15 years and take the meds with success, yet my neurologist, at every appointment still puts me through a set of tests and at the end always says yes you have PD. I know many people personally that at one time were diagnosed as Parkys and now know they have "Familar Tremor" or MSA. When you have been diagnosed by a neurologist and the meds he prescribes have an effect than you are on the path. Other than that stop worrying so much and get more exercise, a lot more exercise. and dont come back and tell me that you already exercise because I guarantee you that you dont do enough. Exercise ,exercise exercise and dont slow down. READ again what MBAnderson said. Exercise is now the most important thing in your life. When the doctor says you need the meds than do it and not before , the exercise will slow the progression down. Start planning and stop worrying.

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I note your definition of Parkinsons , which I believe is not generally accepted by specialists in the field. MBAnderson is just one of many who do not respond to dopamine meds, and is not taking them but nonetheless has Parkinsons. It is a diagnostic indicator, but not the definition of the disease. I have a diagnosis from a neurologist in Carcassonne, based on a neurological examination, confirmed by DATscan, further confirmed by Christine Brefel of the Purpan Neurology centre in Toulouse, and regularly affirmed at 4 weekly clinical trial attendences by another neurologist at the Toulouse research clinic. I am due another Datscan as part of the trial in a couple of weeks. Admission to the SPARK trial had very tight eligibility criteria, one of which was that an experienced team of Parkinsons neurologist specialists confirmed the diagnosis.

An autopsy is the only sure diagnosis, and in these days of Lewy body dispute, arguably that is subjective. By any reasonable standards I'm pretty sure I've got PD. I just haven't tried any dopamine meds yet.

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I stand by my words, my friends that were mis -dignosed were not in the hands of unqualified doctors. You seem to wear your PD as a badge, and yes that is a sign of a "talented hypochondriac" Good luck continue on, you know best.

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You seem to be on the right track! I participate in the MJF / 23 and me, program. That is very positive, and makes me feel like I'm doing something to help myself. Also, I have been chosen to participate, in a clinical study, at a well known University's, Parkinson research Center. Participating is a great way, to keep up in the latest in Parkinson's Research & Clinical Trials, news and reports, that benefit those who have been diagnosed, with PD. Exercise is vital, for retaining some mobility, and research has shown that some types of exercise, are very beneficial, in terms of, perhaps, slowing the progression of PD I am on a Mediterranean diet, take B-1 vitamin every day, and utilize stretch and resistance exercises, along with Dalcroze Eurythmics, to keep myself, somewhat limber. I've had PD for around 10 years now, and even with some progression, including autonomic system involvement, I am managing better than I thought I would, at this stage, of PD. Participating in this forum is very helpful, for all of us!

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No, not every PWP responds to levadopa, unfortunately. A DaTscan is probably the best current diagnostic tool we have...save autopsy.

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Thank you all for replies so far. I may respond individually later today to some. It is encouraging, both from these replies, and from the forum generally, to see people living with PD (rather than just coping with, or surviving) PD more than 10 years after diagnosis. My "plan" (with Mrs WTP) was to turn 8 years into 16 years, by which time I would be 74, and by which time science would have fixed it. Research since then has made me particularly interested in the microbiome as a tool for that purpose. Excercise, attitude, and stress management are other key tools.

My particular interest in this thread was "how am I doing so far"? rather than "how will I be 10 years from now"?

In that regard it is evident that many do well, on many different regimes, and indeed on no obvious (or mentioned ones). Reedboats uncles probably weren't following any of the "new advice" which this forum shares.

Whilst its a very mixed picture, Mrs WtP's recent comments, made me realise I am struggling to credibly deny I may be getting a bit better, and certainly seem to have applied the brakes to what seemed rapid progress last year. Parlepark, Jimcaster's and others replies suggest that is not as daft as I thought. Exercise (a common factor) may well be a major contributor to this.

My neurologist on diagnosis (strictly, on Datscan confirmation of diagnosis) proposed starting me on Sinemet. When I mentioned I wanted to look at something to stop the disease progressing rather than just managed (masked) the symptoms, he suggested Rasigiline (which there was some, fairly inconclusive, suggestion might slow progress), but still assumed I would want /need / start anyway symptomatic medication. When I said, "no you don't understand, there are trials into drugs which might REALLY slow the disease, like Exanatide" he referred me to Dr Brefel at Toulouse, and we reviewed options.

Entry to the trial was on the basis of being newly diagnosed (as defined) and expected to manage without conventional medications for at least 12 months. (There is a presumption that lasting 12 months is possible but after that...)

All of that gave me the impression that "normal" progress would have suggested a "need" for medication 18 months on. (Although as discussed in my original post - "diagnosis" is not a fixed point in disease progress, and I think I was diagnosed earlier than most). Jimcaster's response (also I guess, early diagnosed) suggests it is unexceptional

Thanks again for all the information and sharing :-)

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Hello Winnie

Here is an additional tool/info, copied from Dumpelkin's (HU member):

See the 2nd table in the link below for the average Time Between Stages (Hoehn and Yahr) . Summing up all the durations shown, the median total time from Stage 1 to Stage 5 (As you know, 1/2 of the patients take less than the "median time," 1/2 take longer, so the median time is a kind of average).

en.m.wikipedia.org/wiki/Hoe...

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In all the online groups I follow, my biggest regret is that as people relate their experience on the PD trail, there is no clear way to distinguish the stories of those that do the hard exercise from those that don’t. Most people don’t say. I suspect most do not do the hard exercise. I wish there were a way to know this distinction, to better assess the value of the testimonies.

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I would say there is no benchmark. I have seen people live with small symptoms and very little medication for years. Others seem to get it with a crash. I have heard that by the time you get a diagnosis, you have probably had it for 20 years. Looking back, I believe that to have been the case for my husband. Part of that is realizing some symptoms might be from PD which are not recognized as such...depression for one. (His brother is a shrink from Harvard and did not know depression is an early symptom of PD). While not having the typical physical symptoms, my husband did develop depression and when we counted back the years, 20 came up. Another aspect is one’s own physical constitution...my husband was very strong, athletic and worked out regularly during those 20 years. A big factor, in my mind, was that we always used a considerable amount of supplementation to support general health. This dramatically increased with diagnosis and from then on, he took an enormous array. It has been said that PD is like premature aging which is dramatically affected by proper supplementation. For years we always maintained two internists...one to assure good referrals and entrance into the hospital and another who knew alternative medicine. I do that to this day. I am 84 and whenever I go to a doctor, I am told I am the only older patient they have who doesn’t take loads of meds. I use HRT and a very tiny amount of thyroid med. that’s it. Not that I don’t gave weaknesses-because I do...I’m not a robust type. I take huge amounts of supplements instead of pharmaceuticals to keep the underlying systems strong. I have nothing against pharms when needed but don’t consider those preventative. A case in point is that I now have osteopenia for which my concierge doctor would love to give me a drug . Knowing something about the negative side effects those,I am taking what the naturopathic internist recommends which I think will be efficacious. I have used this approach successfully for years, probably to the annoyance of my concierge doc. BTW, I hope you will read my post describing how antibiotics DRAMATICALLY affected my husband once when he was hospitalized for heart and kidney failure. It’s something to think about.Anyway, I have had many docs tell me that because of the research and supplementation I did with my darling husband, his life and positive function was probably extended by ten years. He died with PD but not of it....although the damage done to his heart by the adrenaline of depressive anxiety and panic attacks eventually did him in, one could say that effect was a symptom of PD so maybe PD really did push him along the way.

Reading the other replies, I do absolutely agree that exercise is a MAJOR factor...as long as it doesn’t get to stress level...much better, constant regular movement...keeps the sugar metabolism more stable.

Love your intelligent letter.

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Laura Mischley's graph is a good way to compare (as you know) - not sure anything else is! We've all been dealt our own hand with the wild card that the PwP you compare with may not be a PwP at all. When someone carefully reports a difference they have made to their own condition then I listen. It's whatever we can do to reduce our own rate of progression that counts. For most of us that seems to be diet and regular exercise - details will vary!

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