I first posted in January 2018 following a short period where I struggled to accept the diagnosis. Please see my Newly Diagnosed post for full details. Now 18 months later I am still in the same position – i.e. I still haven’t told anyone: I am still struggling with work as my writing has deteriorated further and I still haven’t overcome my fear of the medications being offered.
Hence I am posting again two questions relating to management of Parkinson’s through medication and non-medication.
Firstly I would really appreciate an open honest reply from anyone who has experience of starting MOABs, Agonists or Levodopa. I realise that everyone is different, but the constant referral to side effects is stopping me even considering starting. I just feel so ill-informed, so I am reaching out in the hope of hearing back from those who are actually using the medications for your feedback with either good or bad experiences. I am particularly keen to hear from those who have started medication whilst still working and how they have managed the process.
Equally I am keen to hear from anyone who is having success managing their symptoms using: Exercise, Diet (such as grain free), Supplements such as Vitamins & Minerals, Amino Acid Therapy, Meditation & Prayer etc.
I feel quite alone and quite concerned about making a jump to take medication when there may be a different option for me at this moment in time.
Your comments, views and advice will be greatly appreciated.
Hi,
Accepting diagnosis can take a long time, you can’t rush it.
I was diagnosed 3 years ago and put on sinemet straight away. I only read the leaflet later! But I really did feel and look a lot better within two weeks. I felt like me again.
I am still on sinemet but have had to increase the dose a bit.
Exercise -, I walk, do some tai chi and PD exercises off you tube.
I make and drink Kefir daily, which is supposed to help the gut. It’s got to be a habit now and as I’m not doing too badly so far I’m going to keep going with it.
We’re all different and have to do what feels right for us at the time. Good luck
Hello there, if I might add a slightly different point of view for you to consider. In general and I repeat in general because everyone is different, the commonly used Parkinson’s drugs are effective although can become less so with long term use - for most that is a period of several years. Doing nothing is clearly not working for you so maybe the time has come to view things differently. I can’t comment on the non medication route because I do take medication. I didn’t realise how difficult life had become until I started taking medication. All my energy had been used just to keep my head above water at work, evenings and weekend found I was only doing the essentials. I started to take meds following diagnosis. The first few weeks were hard going a) because my medicine cabinet prior to consisted of a packet of plasters and an old barely used packet of paracetamol and b) they made me feel quite nauseous until my body adjusted. Once over that I felt better than I had in months and on the back of that had more energy, was thinking more clearly and was once again able to make decisions. One of the things I struggled with in the early days is the partnership type of relationship with my consultant and PD Nurse. We always agreed on the next step and I have always made it plain I wanted no more than was necessary for me to have a quality of life. At Christmas it will be ten years and I am doing ok. It suits me. Maybe meds aren’t for you but how will you know if you don’t try. If nothing else they may get you off the starting blocks. Alternatively search for a non med route that appeals and give it a go or find some kind of talking therapy to find out how you might manage the fear you have and then perhaps you will find your way forward. Doing nothing is just making life much harder than it need be because the Parkinson’s is part of your life, sorry to be brutal but it is a fact. We all had to find our way to deal with that. These days I am happy to be guided by the medics and whoever but I never forget this is happening to me not them and I will manage it my way for as long as I can. I chose to tell people/work more or less immediately because it quickly became old news and I could get on with life. It also meant I could get the support I needed. That was my way, you must do it your way but I would encourage you to take that first step, without that the despair underlying your words will stop you finding the creativity we all find in all sorts of ways not to be beaten by Parkinson’s and that is to discover life doesn’t have to stop because of it. Be brave, decide on your preferred course and give it a go…and let us know how you are getting on, good or bad. Good luck.
I would say persevere with the meds. At first medopar made me incredibly sick. I lost 5 kilos and just wanted to die. I couldn’t get in touch with the neurologist. My daughter (a GP) suggested domperidon and that did help, but I still felt bad. When I eventually saw the neurologist he took me off madopar and put me on azilect. That was OK, but the tremor was still there. Eventually I decided to try madopar again and this time it’s working. The tremor has virtually disappeared and I can play my French horn again. There are still side effects - for example I wake up at about 4am and can’t get back to sleep - but at least I can do the thing I love most. I know it won’t last forever - but at 76, niether will I.
Hang in there.
I am on rasagiline (mao b inhibitor) only and have been for nearly 2 years with no side effects. It doesn’t eliminate my symptoms entirely but definitely helps, especially with some of the non motor symptoms (sense of smell and anxiety). I’d recommend trying it to see if it helps.
Hi
I was diagnosed 4 years ago but like other pwp had symptoms for a couple of years prior. I started on medication straight away which definitely improved my symptoms, handwriting, walking etc. Last year my meds were changed which my body reacted to, changed again but my symptoms worsened and I wasn’t happy with the way things were progressing.
I researched alternative therapy and after coming off meds 3 months later I decided to try Dr Marty Hinz Amino Acid Therapy which I started January this year. I believe I am better than I was in August last year and am just working on getting the dosage right. I am working with an American naturopath doctor. It’s early days but I am happy with the way I am progressing. Check out Mucuna Pruriens on this forum.
We all have to find what works for us. I wish you well whatever you decide to do.
Hi there - I was diagnosed 6 years ago whilst still working and put on 8mg of Ropinerole which is a dopamine agonist, which made me more tired BUT it did relieve my shoulder pain and general stiffness. I was warned about hallucinations and possible compulsive behaviours but felt that being forewarned was fore-armed which has proved to be the case.
In the last couple of years my tremor has worsened and I was prescribed Sinemet (gave me bad joint pain) and Madopar (nausea) and so I stopped taking them. So am still on the original Ropinerole dose because I couldn’t bear the woolly, not quite there feeling in my head. On a recent research study I was asked whether I suffered from compulsive movements and was told that my answer ‘no’ fitted the results that were coming out which was that these behaviours seemed to be confined to Levedopa takers.
Like you I am not sure where this leaves me as my symptoms worsen but I am determined to stay on minimal drugs for as long as possible. I took early retirement and so am able to do more exercise which just makes you feel better and take part in research which helps understanding of the disease.
BTW they don’t prescribe Ropinrole any more because of its potential side effects but it worked for me. Good luck - I think you’ll know when you really need more Meds and it will be a case of trial and error until you find one you can cope with.
I see you’ve already received a lot of advice and support from other members, however, I just wanted to make you aware that we have information on all Parkinson’s related medication on our website which you can find here - https://www.parkinsons.org.uk/information-and-support/dopamine-agonists.
If you’d like to speak to one of our advisers about this, please give our helpline a call on 0808 800 0303.
Hi, I’m still working and intend to do so for as long as I can. I take Sinemet, Sinemet CR, Rasagaline & clonazepam. I started with a low dose of Sinemet and Rasagaline and overtime the dose has increased and Sinemet CR (slow release) was add to help with symptom control through out the day and making the getting going the next day easier. I certainly have found that taking these meds has allowed me to continue working and colleagues noticed improvements as well.
Recently despite using a reminder alarm for my meds I missed taking my mid-day top up meds. I really noticed the difference in both movement, tremor and mood control. I experienced muscle rigidity which set me in a weird and uncomfortable position. Thankfully felt like my old well new PD suffer self in a couple of days.
To go back to your original question of should you take medication or not. Well that is an individual choice but as you asked for views I certainly believe if I didn’t start when I did I wouldn’t still be working and also enjoying the quality family time. Recently (Feb) after having my meds increased in December my Daughter commented how nice it was to have some of her old Dad back and I’ll take that as a victory.
I would add whatever you decide make sure you are supported both family / friend circle and if you have or can share with your employer then again I would say do this as mine has been very supportive.
I was diagnosed 17 months ago. I am currently taking levodopa (Madopar) with no side effects.
The medications for Parkinson’s treat the symptoms, but do not stop progression of the illness. So, over time, more medication is needed, not because the medication has become less effective, but because the illness has degenerated further.
Personally, I don’t see the rationale for using ‘alternative’ therapies for Parkinson’s when scientifically proven ones are available. Exercise, however, is a proven therapy and I have made great progress in regaining physical strength, dexterity and coordination I had lost through an exercise regime alongside medication.
I was diagnosed about 18 months aga like you but I had obvious symptoms about a year before that which my GP disregarded completely. I was worried like you how my bosses and colleagues would react if they knew about my condition and also how I would cope with my demanding work load. I have a limp in my left leg and a slight shake on my left arm. As soon as I was diagnosed I was given Ropinirole slow release tablets 2mg gradually encreasing to 8mg. My limp got slightly better but I was feeling really unwell. I had no energy, I had insomnia and I wasnt myself altogether. I told my neurologist that I would stop them gradually, which I did. It was January 2018. By July 2018 my symptoms got worse. I researched all the medications and like you, because of the side effects I didn’t want to start anything else. Meanwhile, I changed neurologist. I went to Edgware community hospital. The new neurologist gave me Mirapexin slow release. I started on 0.26 and after two weeks doubled the dose. They also gave me physio. I take vitamin supplements CoQ-10 once a day. I go to the gym about three times a week and eat healthily. I got myself back. I cope with my work load very well. Not only I work full time I also do extra hours. I’m an accountant and I’m always working on dead lines. My bosses know about my condition and they seem fine with it. A couple of my colleagues know too but I’m not treated differently in any way. Without the medication I wouldn’t have been able to function the way I do. At the moment I don’t seem to have any obvious side effects.
To summarise, for me the following worked: medication, exercise, physio and healthy diet.
Hope I can help in some way and wish you all the best with your decisions.
Hi Dazed and Confused
It is getting on for 2 years since i was diagnosed with PD. I was immediately put onto sinemet plus, since when i have not looked back. I was given anti sickness tablets before taking the Sinemet, and have had no side effects whatsoever. The tremor in my left hand had gone within 2 weeks and has not resurfaced.
I was already exercising regularly and have increased it quite substantially. I have to say that I am enjoying the challenege of having PD. I am the opposite of you - I make sure everybody knows that I have it, and that I am no different than i was before - I am still the same person. Keeping positive is important, and not letting PD rule the day. OK, not all days are brilliant, but I am taking the opportunity to try out new things which i would not have dared to try before. now there is no reason to put off trying them.
New experiences can be quite exciting - this morning i went to a casting session for an artistic event which is being organised at a local museum. At 84 any new experience is welcome. I will do it if I can, and although I do not walk very well (chronic arthritis for more than 20 years) I have entered a sponsored walk for the end of April. 2.1 miles will be a marathon for me, but I will have a go, and, as somebody who is very stubborn. I think I will be able to do it, although i haven’t walked much further than 1/2 a mile for years.
PD is not something to be ashamed of - it is a bit of a nuisance, but people don’t usually die from it, they die WITH it, so try to get on ewith your life and don’t be afraid. None of us knows exactly what is around the corner so it is a waste of time to worry about it. Enjoy your life whilst you can!
Hi
I have now been diagnosed for coming up to 11 years. Like you I was reluctant to tell family and friends (even to accept the diagnosis.
I started off on a low dose of Roprinorol which was really effective - so much so that I questioned my diagnosis at my 2 year check up.
However, as we know PD is progressive and two years ago Sinimet was added to my prescribed drugs because of weakness in my legs and stiffness when walking. Like other responses I was warned of side effects like compulsive behaviour and have signed various disclaimers on clinic visits to confirm I am aware of these, but thankfully none have emerged.
I understand your reluctance to start on medication but if you are still working I feel they would help make life easier. I wouldn’t be without my Sinimet now as within 30 minutes of taking a dose I can move nearly as well as I did 10’years ago!
My husband was diagnosed about 18months ago but refused medication apart from laxido. He was not offered anything else. He has just started taking medication because he was feeling dizzy except when sitting or lying down and he has now been referred to the nearest Parkinson’s clinic, this should have been offered before but presumably if he wasn’t taking medication they didn’t want to know. So it would seem that if you take the medication there is more on offer than if you don’t. Possibly a reason to take the medication.
Many thanks to all of you who have taken time to reply to my post.
It has been very helpful hearing your real life stories about your own experiences. In addition it has been refreshing to get some brutal honesty regarding the medications, along with my own situation and reluctance to start them.
I will use all of your input to plan my way forward, whatever route that may be.
It has certainly given me food for thought and yes I hope to post back again with an update sometime in the future to let you all know how things are progressing for me.
Hi I’m in the same position as you. PD starting to affect movement in right arm and quality of life, but I’m terrified of starting meds and possible side effects. I work full time in a demanding job and starting to struggle. Did you start the meds? Did they work for you? I have found the posts above interesting and it is good to hear others experiences. My consultant says to get in touch when I want help, he is only offering medication, Levodopa.
I’m glad you’ve found this thread helpful, you’re definitely not alone with regard to your fears about Parkinson’s medication. I would encourage you to continue to reach out to other members on the forum for their support and shared experiences.
Like any drugs, Parkinson’s drugs can have side effects. This means that some things you may think are Parkinson’s symptoms could be side effects of your medication. However, Parkinson’s affects everyone differently so not everyone who takes medication will experience side affects and I would advise you to visit the Parkinson’s UK website for information about Parkinson’s drugs.
You can find this information here: https://www.parkinsons.org.uk/information-and-support/parkinsons-drugs.
Regarding your work, although you are not obliged to tell your employers about your condition, if you need to change the way you work because of your symptoms then you will need to ask your employer for a reasonable adjustment under the Equality Act or Disability Discrimination Act in Northern Ireland. If you do not tell your employer about your symptoms, they will not be under a duty to offer you reasonable adjustment. We have more information on this here: https://www.parkinsons.org.uk/information-and-support/work-and-parkinsons
For more support on this, you are more than welcome to speak to an advisers via our helpline on 0808 800 0303. They’d be able to answer any questions you may have about your job and medication.
Thank you for your post. I am sorry to hear that you are in a similar situation to myself. I fully understand your concerns.
Apologies for the delay in my reply. I haven’t visited the web pages since I originally posted my question.
At the time I received some useful advice from some lovely people. However, it didn’t help me to make a decision. Hence since posting I have still not started medication other than trying an MAO-B inhibitor for a few months, but no discernible improvement to my symptoms…
Sadly I haven’t been seen by a neurologist for the last 2.5 years. I asked questions about alternatives to medication and he said he wasn’t a specialist in PD and had no answers for me. It was medication or nothing.
It is disappointing that there is no real support or interest in alternative therapies.
