I have just been told by gp that i probably have Parkinson’s. I have been reading up on treatments and have scared myself witless about the side effects that are possible. Can anyone help me with this do they always happen
Hi Patrick1,
Please, please don’t listen to what your GP says.
They actually haven’t a clue and are simply guessing.
There are many ailments that it may be.
The only ones who can tell you the facts are good Neurologists, and those who specialize in movement disorders.
Remember, even in the case that you may have PD, you may not need any medication for years.
I have had it for 3 years now and fortunately my symptoms have been mild and I am only going onto basic pills now.
Also remember PD affects everyone in different ways, even though the basics are the same, and that different medications affect different people in different ways.
Honestly don’t worry, of course there are side effects in any medication you take, even flu medication. Your neurologist will guide you.
Hi @Patrick1 I should think it would be very unusual for anyone to suffer from all the side effects. I take 4 different medications and have noticed only one side effect, which is dyskinesia and that only started after taking sinemet for several years! Everyone reacts differently so it’s really impossible to predict.
I do agree with @CliveV though that you should wait for a consultation with a neurologist before worrying too much. Anyway, in the event that it is PD, it isn’t as terrible as it might first seem. For many progression is slow - I was diagnosed 6 years ago but am able to do nearly everything I was doing before the diagnosis.
All the best
Clare
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Hello Patrick1
I see you have already received a couple of replies and please take note. Although it is a natural instinct to read everything you can lay your hands on when a diagnosis like Parkinson’s is suspected - and your GP is only saying probably - it is rarely a good idea because the result is exactly what you’ve found, you succeed in scaring yourself or only remember the blackest of black scenarios which is not the reality. So please, please try not to panic… I agree with CliveV and Singing_Gardner you should wait until you have a confirmed diagnosis from a consultant.
Medication is key in management of Parkinson’s symptoms and it can take time to get it right and that will include taking account of any side effects you may experience but it is certainly not a given that you will experience any…
If you are formally diagnosed with Parkinson’s you may, like many go through a a huge range of emotions, you may be frightened, you may not be able to see any future for yourself or at least not the future you envisaged… All legitimate and part of the process of learning to live with Parkinson’s and you will learn to live with it in your own way and in your own time. You may have to take that on trust for now, but we’ve all been at the point you are now and lived to tell the tale.
So take a deep breath, calm down and wait until you know what your diagnosis actually is before thinking. the worst and making massive and unfounded assumptions about what this means for you. One step at a time, one day at a time, is a far better way to get through this strange and difficult time pre formal diagnosis than galloping ahead making giant assumptions based on nothing because you don’t actually have a diagnosis yet.
Tot
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Thank you for the help. I think given reading up on symptoms and although
I don’t have a resting tremors, the symptoms like stiffness and rigity do fit in with PD. It’s a huge shock . Am
Devastated.I used to be happy, go lucky outgoing person know what I want to do is shut the world. Does this feeling ever go away?
Hello again Patrick1
The short answer to your question is yes it does but it does depend to a certain extent on how you yourself choose to see a life with Parkinson’s if indeed your diagnosis is confirmed.
You don’t need to read many of my posts to know that to me the most important thing is to be positive. I have written often in reply to posts that I never give Parkinson’s star billing. I am Tot first and I happen to have Parkinsons. I have Parkinson’s that’s a fact I can’t change so I accept that but instead I challenge the brickbats it throws into my path every now and then. Another of my oft repeated sayings comes to mind - I have Parkinson’s it doesn’t have me.
Positivity is my way of living with Parkinson’s. I am coming up to the 14th anniversary of my own diagnosis, I live alone with minimal help (which I privately arranged) and just get on with living my life very much in the present. I don’t know what the future holds but then nobody does, so why waste today worrying about something that may never happen and if it does, well I will deal with that at the time.
Having a diagnosis of Parkinson’s doesn’t change the person you fundamentally are. My way is not everyone’s way and that’s fine, we all have to find the way that suits us as individuals. Nor does Parkinson’s mean you no longer have a life. It may not be the one you envisaged or want but to me it’s just takes life in a different direction that’s all. It’s up to me to make the best of my life same as it was pre diagnosis.
At the moment you are grappling with a possible Parkinson’s diagnosis and your life and everything you think is turned upside down. Ir is not an easy time and I’m not going to pretend it is but this period does pass. I can’t tell you when or how long because it is your life not mine but you can have a good life with Parkinson’s if that’s what you want.
Tot
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As I get nearer the dx of PD I have started to look again at the treatments and am terrified of the side effects. I can’t live like that it sounds horrendous especially the OCD it says 1 in 4
Experience this is that true
These are some of the side effects listed as 1-4
Here is a recent list. The first 10 are the most common:
Gambling
Excessive lifestyle
Shopping
Hyper spending
Reckless generosity
Hypersexuality
Extramarital affairs
Suspicions of partner’s infidelity
Cross dressing
Pornography (inc child pornography)
Prostitution use
Fetishism (e.g. bondage, masochism, sadism, paraphilia)
Sexual reorientation
Obsessive masturbation
Exhibitionism
Paedophilia
Zoophilia
Visual hallucinations
Obsessive risk-taking
Punding
Delusions (e.g. grandeur, paranoia)
Threats of violence
Violence
Hi Patrick1,
Sorry but where did you get these from.
It seems that wherever it was, there is nothing short a list of anything and everything they could think of that came into their diseased mind.
Really and truly they are way past ludicrous.
Of course there are aspects that are true, but as you know everyone is different.
These are the ones that may “happen”
Gambling Certain medication may exacerbate addiction to gambling etc for those who are have addictive personalities)
Excessive lifestyle, I’m not quite sure what that is supposed to mean, but presume it would encompass the Shopping and Hyper spending.
I have never heard of these as a symptom. They could apply to anyone who has PD or not.
I would presume the next 3 are all interrelated, but again they are not symptoms of PD.
Hypersexuality
Extramarital affairs
Suspicions of partner’s infidelity.
Really please, please don’t go onto the internet for PD and the like.
It is simply filled with total and complete trash that people make up.
If you feel you want to go onto it, go onto sites like the Mayo Clinic, etc .
But rather speak to your neuro and read the inserts of the medication you take.
The “frequent aspects” and “less frequent” aspects are what you should look at. Everything else is the pharmaceutical companies doing everything in their power to cover their ass.
In fact I am sure if you look enough they will also have a disclaimer from you being hit by a meteorite whilst on their medication.
Hi
I have now got a diagnoses of idopathic parkinsons of what the consultant called a benign type. Can’t find out any information on this has anyone else heard of it
I have idiopathic Parkinsons, it just means unknown cause. I’m the only person in my close and extended family with PD.
The previous writer is correct in that there is a lot of misinformation on the internet and you will get better and more accurate information from this site.
Unfortunately some extreme symptoms can occur but normally as a side effect of some of the drugs for PD.
I have been banned from dopamine agonists such as ropinerole and Mirapexin as I got severe side effects.
I developed obsessive compulsive disorder from taking these drugs. I became obsessed with sex whereas I am normally a shy ‘good girl’ by nature. I was also on the computer all the time writing erotic fiction.
I had 12 books published in 6 months and I was still working full time!
My husband was very concerned and took me to my neurologist who immediately took me off the drug and within a few weeks I was back to my normal prim and proper self.
I feel mortified by how I was behaving even though I know it was the drug and not me.
Please don’t take the drugs lightly. They are very powerful. Some people get great results without the side effects but to others like me, they are dangerous.
If you do take them, let your family be aware of the possibility of side effects as you may not recognise it in yourself.
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I delved deep into my diagnosis 12 years ago, it became too much for my mental state and I suffered badly for a few years, I don’t mix with other sufferers as it’s not good for me.
As someone said you end up with very black ideas of what’s happening
Patrick
The initial year or 2 scared me but I think there’s much to support
Patrick’s view. It is a slow moving thing PD . There is good palliative
Care tho it’s not a cure… but it can help you takes some of the load off. Worry is not good, try not to expose yourself to random views
But don’t shy away from finding about
PD and about mainstream therapies… that’s my point of view some may not agree. I was wound up by it and I did therapy which has helped me tho it’s expensive but if a goo therapist and u have some
Cash it helps imho. If u can’t afford it maybe there is a good group
That organises various support classes which can help and be prepared for it not being on your doorstep.
Rgds Andy (aka Ojalahey)
Hi Patrick,
I was diagnosed with Parkinson’s in 2012 at the age of 31yo(young onset Parkinson’s).
I will try to give you information based on my experience. I was going to write it for others on this forum, but just being lazy, never got a chance.
I nearly paid with my life because of a lack of information. If I had known what was coming in my future, I would have made better decisions and would not have to go through this pain.
Anyway, not to overload you with information, I have divided it into small parts so you can only read the part that interests you.
1- Pre-Diagnoses Symptoms.
2-What is Parkinson
3-Addiction and side effects
4- Treatment & illness progression
DBS
Medicine delivered through a pump
5- Cure in future
1- Pre-Diagnoses Symptoms.
Loss of sense of smell, constipation, depression/crying for no obvious reason, my left leg started getting tired and my left arm’s small finger was numb, as the day progressed,
In the morning, it was fine but by the afternoon, it was getting worse.
while walking, my left arm was not moving as much as my right arm.
2-What is Parkinson’s
Parkinson’s is the result of the human body stopping making dopamine, due to the loss of dopamine-producing cells. It is mood mood-balancing hormones (also called happy hormones). Similar to diabetes where the body does not make insulin.
It is also responsible for many other body functions, e.g. movement, memory, motivation, mood, attention etc. The medical science does not certainly know the root cause of Parkinson’s. Age and genetics are key factors in some having Parkinson’s. There is general acceptance that Parkinson’s is not one illness but a group of illnesses that have the same symptoms i.e. loss of dopamine cells.
It is a bit like having a fever, which we treat by taking panadol to manage temperature, but unlike fever (where we know that it could be due to chest infection, or any other injury getting infected, resulting in high body temp.) we don’t know the exact reason, so there is no cure but to keep taking a med to make up for the loss of dopamine.
3-Addiction and side effects
Because its a happy hormone, so any activity that makes you happy, results in the human body making more dopamine, hence it leads to reward/positive feedback behavior. As a result of this, unintentionally, we keep repeating the same activity that made us feel better & produces more dopamine.
The medicine (Levodopa), which it replaces the loss of dopamine, it also results in hyperbrain activity. This means, that once something bothers you, you can’t get your mind off it, in turn, it results in compulsive behavior, the unrealistic judgment of the situation, When your dopamine level is at its peak, you become very optimistic and when dopamine level is low,it made you very pessimistic. So you could make different decisions about the same situation, depending on the level of dopamine in your body.
So this reward feedback/hyperthinking is the main cause of addictive behavior. In my experience, you are only going to become addicted to these if you already get happiness from any of these activities. As men (male), we have the internal desire to pass on our genes, and we are more prone to sex-related addiction If you are into any money-making activity, (gambling, lottery), then there are high chance that you will develop addictiveness to them.
Luckily, for me, I was always very keen to manage my money, and staying on top of my finances gave me a lot of happiness, so I kind of have an addictiveness to planning my spending, and building up savings to an extent that I have excel file, where I manage my monthly/yearly spending. I always end up in green i.e. I spend less than what I thought, and I would go to great lengths to save 5 euros.
4- Treatment & illness progression
Similar to diabetes, in the honeymoon period, you take your medicine, 3-4 times daily, the medicine works and you feel normal. But after some time, more dopamine cells are lost, so you have to increase the dose and frequency of meds. At some stage, because of the fluctuation of dopamine in your body, you start developing medicine side effects on peak time i.e. dyskinesia, ( involuntary movement).
To counter that, you have to take a small dose with increased frequency.
Because the path medicine takes to get absorbed in the bloodstream is same as for food, and high-protein food reduces its absorption into the bloodstream. At that stage, quantity and type of food become more important, it can result in off-time due to low levels of dopamine, which makes moments difficult, low in mood/v pessimistic. Fluctuating mood and hyper thinking results in excessive dreaming and lack of sleep. If the dopamine level drops too much, when you take your med, just before medicine fully kicks in, dystonia (involuntary muscle contraction/very painful) starts happening. The trick to managing Parkinson’s’ is to have an adequate level of dopamine in your body, which is a big challenge because the amount of medicine that you need to make up for lost dopamine changes throughout the day( there is a normal dose/ then you have to take more med to makeup/compensate for the type of food.
Also, during the night, your body needs less dopamine, so in the start, your body makes enough dopamine that you don’t need any med at night, but at a later stage, slow-release type of dopamine medicines is used for night time.
At some stage, it becomes impossible to manage using only tablets, then there are two options, one is DBS (Deep brain stimulation by using electrodes inserted into the brain and powered by the battery in a remote control beside your chest under your skin. It stimulates the remaining dopamine cells to produce more dopamine under your skin.
The second option is the dopamine (Levodopa) pump, it delivers medicine directly to the small intestine through a tube that is inserted into your stomach, but it greatly reduces off time, because its directly delivers med, and food interaction is greatly reduced.
5-Cure in future
In my opinion, “The magic pill cure” is highly unlikely in the near future, but there are new therapies in the pipeline that will improve the delivery of med and quality of life to an extent that the impact of illness will be very small e.g. there has been new treatmen6 approved in the UK recently which delivers med directly to the blood steam for 24 hrs, unlike dopamine pump, which means food interaction is not possible and desired level of dopamine is maintained automatically.
The cure for Parkinson’s lies in two things, improvement of wide-scale use of stem cells to replace dopamine cells and genetics engineering where DNA can be modified to change faulty genes, I think, we still have a long way to go, but who knows, with the help AI, and combined effort of all scientific community, a cure can be fast-tracked.
Patrick,
Just to add two more points from my experience regarding side effects/ addiction/depression.
As i suffered from depression as part of Parkinson’s, for me taking regular anti-depression meds is as important as my main med if not more.
Regarding addiction, there is an anti-psychotic med that reduces dopamine levels in the part of the brain which is related to hyperbrain activity. It did help me control my unrealistic thoughts. check with the neurologist.
Patrick,
Most of Parkinson diagnoses are idopahic, i.e. There is no known reason for the cause of parkionson. So you are not alone.
Only 10-20% diagnoses are due to known genetic mutation. There coulde be many other genes mutation that results in parkinsons but we just6 dont know yet.
I agree with your view that a cure (ie making us better) is likely a long way off. However, I believe that a treatment that could halt any further deterioration/progression of PD could be round the corner. This would be a game changer. As an example I’m eagerly awaiting the results later this year from the Exenatide trial (a drug already used to treat diabetes).