I happened to be reading a magazine article on Parkinson's and discovered some of the early symptoms fit my partner. Specifically, he lost his sense of smell some years back and he has suffered from a steadily worsening 'frozen shoulder' which should have got better over the years, but never has. Instead he complains about sore necks and stiff arms and pain in hi hips as well. He also has to get up during the night to pee more often than I do now and that's unusual because it used to always be my failing! Lastly, he sort of half has one final symptom: he is given to sudden jerking and twitching when he's asleep, and sometimes shouts out, but that's rarer.
I wouldn't have worried about any of this unduly except for the fact that the sense of smell loss followed by frozen limb problems seem to be more unusual, plus, his sister has Parkinson's disease. She got it around the age he is now - 59. But, and it's a big but, he has no motor problems that I can see. He definitely doesn't have a tremor and I've never noticed anything odd about his gait. He's clumsy and bumps into things all the time, but he's always been like that! He does also suffer from dizziness on standing which can get quite severe in 'spells' then it settles again.
Is this worth taking to the doctor or is it all a storm in a teacup? I don't want to leave it if it might be a serious possibility, but the signs seem so vague and he has no tell-tale tremors or walking problems.
A more tutored eye would be greatly appreciated here, from people who know the disease and know how typical or not any of this might be, and whether anything serious is afoot! Thanks.
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Chancery
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Hi, I would definitely discuss these symptoms with his doctor. My husband had similar symptoms years before his tremor developed. Hopefully it is nothing but it is better to have him checked out and referred to a neurologist if needed.
Many thanks, Wife; I am tending to that opinion myself - better safe than sorry, especially as his sister's disease is now well advanced, and she wasn't diagnosed till she had a bad tremor. Better nip it in the bud. Besides now we have discovered it, it will be preying on our minds!
Hi John, I was under the impression that it was important to diagnose Parkinson's early because the earlier they started with drugs the better your prognosis was. That's what the article said - is that wrong?
I had all of those symptoms in the years leading up to my diagnosis. It was the development of the tremor and lack of ability to move one arm fully that finally got my attention. However getting my GP to take me seriously was a challenge. I went 3 times before I was referred to a neurologist and that was after I had an assessment and report done by a chiropractor.
I hope that helps but as you may be aware, the treatment available is to manage symptoms not to cure. I would certainly investigate alternative methods to assist regardless of whether you got a PD diagnosis or not.
I personally do qigong and tai chi as well as acupunct to ease my symptoms as well as a very healthy diet.
Hi Firefly, how depressing for you, to have to fight your GP over something so serious. What do you find helps best, by way of diet and lifestyle changes?
I'm currently on a vegandetox diet ffor a few months. I'm also having my multitude of mercury fillings removed by a mercury safe dentist at a huge cost. I do the recipe for recovery from fightingparkinsonsdrugfree.com. I find that website to be immensely helpful. Finally my most important message to you is that don't give up hope. There are people out there who have recovered or have reversed some of their symptoms. We can commit to be counted amongst them. Medication will only manage the symptoms and will also overload the body with toxins which is one of the factors which contribute to PD in the first place. You're in a good place as the symptoms have not progressed fully. Good luck. Blessings and prayers for you all.
Kudos for getting your fillings removed. I have ceramic filling and through my investigation I discovered a fascinating article by Bernard Windham entitled:
Mercury Exposure Levels from Amalgam
Dental fillings; Documentation of Mechanisms by which Mercury causes over 40 Chronic Health Conditions; Results of Replacement of Amalgam fillings; and Occupational Effects on Dental Staff
It is one of the most intensely researched articles I ever read. His footnotes spam 36 pages!
Hi Grannani, he's had that a LONG time. He's always been a fainter, and had trouble with standing. It comes in spells, particularly if he's stressed. But his blood pressure was fine last time it was tested a few years ago.
Many years ago (and for many years) I had an adrenal condition and my symptoms included orthostatichypotension (your blood pressure decreases upon standing and I occasionally ended up on the ground), the inability to handle stress, allergy type symptoms, poor sleep - the inability to go to sleep at night, low to mid-grade depression, brain fog in the morning, I had to 'crash' (take a nap) in the afternoon every day...... Does your partner have any of these symptoms (in addition to BP shifts and poor stress control)?
As for the symptoms you noted, yes I would speak to a doctor about them. Prior to any sort of testing for PD, DATSCAN test...., the way a doctor would diagnose PD was to note clinical markers like the ones you stated in your query and then give the person levodopa/sinemet. If the person responded positively (symptom improvement) to taking sinemet, they then had a PD diagnosis.
Thanks, Silvestrov. My partner has no sleep problems. In fact, quite the opposite - he has problems staying awake! But yes, he's always been a bit of a fainter and suffers with giddiness in standing; it seems to be attached to stress though. At the moment he's showing no serious PD symptoms so we're hopeful that his symptoms are just coincidental.
The symptoms you describe certainly are PD symptoms. The fact that there is no tremor is not significant. About 33% have no tremor.
Some other things to watch out for include
1.Does he still have a balancing arm swing while walking or does he just have a mostly limp arm.
2. Does he smile or for that matter pull any facial expression readily.
3 Has his voice lost any of its vigour and become more quiet and whispery
4. Does he seem to be a little depressed
5. Some people suggest constipation as another symptom.
6. Drag a foot when, not so much walking as manoeuvring around
the house
PD in its earlier phases has symptoms in common with other a number of alternative neurological conditions.When diagnosis is in doubt in this way the GP may well describe the illness as Parkinsonism.
The loss of sense of smell (Anosmia), (and I'm not sure on this one) does point towards normal PD rather than one of those alternatives A frozen shoulder is also to be found quite commonly as a PD symptom.
It might take a while to get a firm diagnosis
The wikipedia entry for PD is quite a good place to start looking in more detail at PD:-
Hi Pete, thanks for that list - very useful. I have to say though that not a single thing applies to him, that I'm aware of. I am wondering if he maybe has the gene for it, as it were, but that he isn't in any danger of actually manifesting anything more serious than what he has now.
I find that disease seems to be like that. You have your genetic 'weakness' but it's only if you have certain environmental triggers in your lifestyle that make the disease happen. Hopefully he's lived sufficiently differently from his sister that it's going to show up as nothing more serious than an annoying frozen shoulder and some damage to his sense of smell!
We will go and have it checked, I think, just for peace of mind, but I suspect that the NHS will pooh-pooh the idea anyway without something defining, like a tremor.
10,000 new cases of PD diagnosed every year in the UK . There isn't a lot that can be treated in the early stages anyway. Just a case ofmonitoring symptoms and if you found some things difficult to do that are important for you to continue being able to do then that would be a good time to back to see whichever specialist you GP can send you to.
Good to know, Pete. Might be an idea to just leave it then, if they wouldn't treat it anyway. No point in more depressing doctor visits. We have quite enough of them, through me, to be going on with!
Hi Chancery, I've just responded to your post bu lost it before posting it. Can't be bothered to try a full re-write.
I was trying to say that it would be your decision when to take treatments But you should still go to get as good a diagnosis as possible and discuss things with your neurologist.
I think they would supply treatment according to need and that would be variable. So a brain surgeon would need treatment earlier to control an unsteady hand whereas a sheep farmer could go along a little longer before needing help
Thanks, Pete. Since I first posted on here I've changed my mind about the best course of action. When I first read about the symptoms he shared my impulse was to get an appointment straight away, since I was under the impression that earlier medication helped to check the deterioration of the disease. Now it appears that's not the case and medication is only used to delay/improve symptoms and make the condition liveable with. Frankly, I've experienced that style of medicine myself and it's not worth doing unless you are desperate, so I intend to find what lifestyle choices we can make to improve his chances of the disease not claiming him.
Thanks for all your input. It's been invaluable.
As with many replies here, I agree he should be checked. My spouse still has no tremor, yet has quite advanced multiple system atrophy. It took several doctor visits and about five years to figure out what was going on. In hindsight, the first symptom appears to have been loss of sense of smell. Then, he began walking into things. Adding to Pete-1's list, has his handwriting changed, getting smaller or less legible? Micrographia can be an early sign of Parkinson's or one of its related diseases like MSA.
Hi Degia, his handwriting is appalling, and well-nigh unintelligible, even to him! But I can't remember it ever being any different. Likewise, he's as clumsy as an extra large bull in an extra small china shop. Only today in M&S I caught him steadying a mannequin he nearly knocked over. He's lethal at fifty paces, but I don't know how new or relevant that is.
I suppose there's the possibility here that these things have deteriorated slowly, but how do we tell?! It's very difficult to know what to do...
One very strong indicator is someone who has Levodopa treatment but gives a very poor response to that drug. Either that or what happened to me was I needed a larger dose before I could detect a difference.f
Progressive Supraneuclear Palsy. This is what Dudley Moore had. It is quite rare. May be misdiagnosed with PD in earlier stages due to those symptoms that are shared with PD and around 12 other diseases or variants on them.
The following is a post I wrote ages ago that lists at least the majority of ailments under the Parkinsonism umbrella.
Parkinsonism s a generic term for all Parkinson's disease like ailments. It is usually used when no definitive diagnosis is yet clear. Parkinson's disease that afflicts most is often called Idiopathic Parkinson's disease where Idiopathic means "of no known cause". This being the true for most cases and only a few may be diagnosed as inherited.
Diseases that come under the term Parkinsonism or
may be misdiagnosed as, in the early stages are :-
1. Idiopathic Parkinson's disease - most common
2, Vascular Parkinson's
3. Drug induced PD
4, Inherited PD
5. Juvenile PD
6. Multiple Systems Atrophy MSA
Progressive Supranuclear Palsy PSP
Three different sub-types that I can't remember the names or descriptions of
7. PSP 1st
8. PSP 2nd
9. PSP 3rd
10. Cortico-Basal Degeneration CBD - related to PSP
11. Lewy body dementia
12. Alzheimer's
13. Multiple Sclerosis
14. Huntingdon's disese
15. Essential Tremor ET or BET
16. And there's probably more.
Terms for those ailments described as Parkinsonism may also be named ‘atypical parkinsonism’ or ‘Parkinson’s plus’.
Would start with neurologist instead of GP. I had masked face, trouble sleeping, anxiety, stress, loss of smell, aching hands, plus unexplained neck and back pain for decades (which disappeared after treatment began).
Thanks, Coblrman, but as far as I know you have to get a referral to a neurologist via the GP so we'd have to start there anyway. We have the added disadvantage that our local neurology department is crap, so we wouldn't be in a rush to go there anyway!
That's interesting. Can I ask you, what does masked face look like, exactly? Can the sufferer not smile, for example, at all, or is it something more subtle than that?
Masked face, poker-face is there a difference? Not really Most facial expressions are made automatically. A PD person looses a lot of automatic things. Including the ability to e.g. smile without conscious effort.
Another example is drooling where an amount of saliva is liable to spill out of the mouth. Normally an accumulation of saliva is drained away by an automatic swallow. Without that or at least often enough of those the PWP will drool
So Parkinson's sufferers have to think about smiling, rather than doing it as a natural response, but they can still smile? Does that create a kind of forced smile, like it's fake? Or hard work?
I wonder what your husband thinks about all this? Is it a concern to him?
All the symptoms you describe can have other explanations, loss of smell not only PD, frozen shoulder does not always get better, arthritis can cause joint pain, getting up in the night is very commonly caused by enlarged prostate, many of us twitch in our sleep.
There is no conclusive test to prove PD it is all on signs, tremor, stiffness, slowness, balance problems. This may be helpful.
nothing we can do to stop progress beside healthy lifestyle choices and drugs only when symptoms are bothering us. Most of us prefer to get on with life until PD really makes itself felt.
Yes, Hikoi, it's a concern to him. As I mentioned, his sister has the disease, in a fairly advanced state, and it's distressing to see how impaired their lives are, despite them not being very old.
But I can see from the replies on here that Parkinson's, like most diseases, has very little help from medicine in its early stages. As he would not be interested in medicating at this stage, if that was even an option, it seems fairly pointless to have it checked out by doctors.
I am sorry to say that for before showing any tremor I first started having dizzy spells and had a frozen shoulder for a long time and I realised I had lost my sense of smell. After these first signs (which I dismissed) I started to have a "resting" tremor. By this time my handwriting had deteriorated and got very small. It was then I got a PD diagnosis but did not need to start meds immediately. Before going to the doctor (I do not believe he can do anything at this stage anyway) I would look at taking out critical illness insurance cover asap. These are early warning signs that are not widely recognised. I had these symptoms for well over a year before the tremor sent me to the GP. Not what you wanted to hear I am sure, but I hope you both take the opportunity to secure you finances while you have a chance. It is also VERY important if you have Critical Illness Cover that you read the Terms & Conditions carefully. I nearly lost out after diagnosis because I was not intending to claim until I could no longer work and was in financial hardship. Fortunately for me, my PD nurse advised me to re-read my policy and sure enough there was quite a small window of opportunity to make a claim and I would have missed my chance to claim. It paid a nice chunk of my mortgage for me! I had no idea when I took out my policy that I might get PD as I knew nothing about it. It was just an uneasy feeling that something was not quite right. I am sorry to give credence to your fears for you husband but forewarned is forearmed. Good luck and best wishes for the future. I would like to add that it is now 12 years since my diagnosis. Coming to terms with the diagnosis was hard but if your husband does his best to keep active and exercise and follow his hobbies he may learn eventually to spot the blessings in his life. You sound a concerned and caring partner and your support will be invaluable to him. It can be a very testing time for both of you but despite it all I am able to say I am happier now then ever before. I live for each day, take nothing for granted and "do not sweat the small stuff".
Thanks, Tinker-bell. Everything is pretty much unchanged, except his joint pains are getting worse. He's having problems with knees and hips now but that could simply be arthritis. He is 60 now and is still showing no motor problems, gait problems or a tremor, so I'm hopeful that all may yet be well.
Thank you for your reply. I shall keep my fingers crossed for you, but be aware that the other symptoms may not start for a few years yet. I also suffer hip and knee problems (which may indeed be arthritis). The frozen shoulder came way before any other symptoms. I still urge you to make contingency plans just in case. I hope I am wrong and you will not need them, but they can do a little to lighten the load if needed.
Thank you. Please let me know how you get on. Try not too worry what the future may bring, hedge your bets and prepare then busy yourselves enjoying the present. It is amazing how resilleant us humans can be in adversity and still manage to enjoy life. All the best to you both.
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