Diagnosed yesterday


#1

My name is Clare and I was diagnosed yesterday after an abnormal DaTscan and worsening symptoms over the past couple of years. I work full time as a midwife but currently I’m off sick because my symptoms mean I’m not safe. My neurologist wants me to start Sinimet as my symptoms necessitate some sort of intervention if I wish to continue to work. And I do! I’m only 45 and have three teenage boys, the eldest has just gone to uni and the youngest has autism. As a family we have busy lives and I want to be able to participate in that for as long as possible. I have a meeting with HR next week to look at ways to get me back into work. I’m hoping someone can tell me what to expect from Sinimet? My neurologist discussed the side effects at length but personal experiences would be useful. Thank you for having me. I look forward to getting to know everyone. I just feel numb about it all at the moment and wonder whether it will hit me soon what this actually means for me and my family?!


#2

Hi and so sorry to hear this. If you want to vent then I’m here for you.
I’m a widow. I live with and care for my mother (90) who has PD (over 30 yrs now) and dementia.
She’s hard work as she is stubborn but I try my best.
Shame the family don’t bother much … I’m 68 but tied to the house now. But I do try to take Mum out as often as she feels well enough …
How about writing? Everyone has a story to tell …


#3

Hi Clare
I have been on simenet for nearly 15 years with no side effects as far as I am aware. I am 51 diagnosed at 24 so have had a long time to get used to it but a diagnosis is a confirmation and that’s hard. I have 2 teenage boys one at uni and the youngest just finished school and off to travel in January - he has ADHD. They have only known me with Parkinson’s. You are not alone - and with sense of humour and a positive outlook you will survive. I hope you get back to work - but that’s a tough job you have and I always find my symptoms worsen when I’m tired. One thing I have learned is that it is a very personal disease - no two perople seems to have the same experience. Good luck x


#4

Sinamet can offer great control over symptoms stress need to be avoided though that is the worst thing for pd.


#5

Hi Clare
I have been diagnosed for 7 years now and initially symptoms were mild and controlled with Requip. More recently I experienced weakness in my legs and stiffness of movement and have been prescribed Sinimet. I don’t want to raise false hope but I find it a wonderful drug. Within 15 minutes of taking in the morning I can move about with no problem. Sometimes I can even convince myself I don’t have PD.
The down side is that in some people it can have side effects such as twitching so you would need to discuss this with your neurologist.
Also I agree stress and tiredness can make symptoms worse so take all the help you can get from your Parkinsons specialist nurse (if you’re lucky enough to have one).
Hope this helps.


#6

Hi Claire one thing you need to remember is no two people are the same I have had pd for five years and am ninth in the family with it sad to say only one left but we all had different symptoms and all took different medication so don’t worry if it doesn’t work there are options as has been said stress is to be avoided if you think I can help you please feel free to contact me
Pete


#7

Hi Clare, as Peter has said this disease affects people differently. Not having had Sinimet I am unable to relate but I have tried different medications and have been fortunate to have had Deep Brain Stimulation done. I can understand your anxiety, what I tell everyone I speak to on here is to adopt a positive attitude and rise above the diagnosis like it doesn’t exist. Live every day as normal as you can, the thing is to try not to dwell on it, think happy thoughts, it is not instantly life changing. Hopefully your HR People will put you in an environment where you are working with lots of people around you so that they are there should you experience a problem. I was a lorry driver operating a 44 ton vehicle and so had to stop because of it being heavy machinery but I am still able to drive our car(competently I might add !!) although i’m on a 3 year restriction with DVLA. Don’t be surprised if some of your friends decide they don’t wish to be associated with you because of the disease, these people aren’t worth the paper their name is written on.
Your true friends will stand by you as will those of us on this Forum. Remember Clare, if you have any concerns just air them on here, we are all in it for the long haul and we try to help one another where we can. You are not alone !!

Les


#8

Hi Clare,
You have already had some great advice and I agree with those who say a positive attitude is paramount. I was diagnosed just over 5 years ago. With the help of my Parkinson’s Nurse my medication has been gradually increased to cope with the symptoms. I now take Sinemet (Stanek) three times a day and also Requip XL in the morning and a slow acting Sinemet at night. I have had no problem with the Sinemet and depend on it to function. My advice would be: find a good Parkinson’s Nurse that you can have faith in, be open about your condition with friends and family, and be thankful for each day… I wish you all the best.


#9

Hi Clare, I imagine you must still feel numb and distressed following this diagnosis. I was diagnosed 15 months ago after I experienced the delay of 6 months following a referral from my GP to consultant neurologist. I went privately and was told the diagnosis – burst into tears in the car park with my partner Helen – was simply told to start Sinemet as you have been. I was not given any further information.Follow-up was one year ahead.
I have since discovered a great deal of support and practical approaches that have been immensely helpful to me. As well as stopping Sinemet because of side-effects and starting another regime which is being very effective. I am 80% or so better than when I was first diagnosed.
What has made the difference?
– Exercise - of the ‘use or lose’ it kind. Realising that the doom and gloom of inevitable decline is not always the case. This is a paradoxical disease where dopamine depletion is real but where alternative pathways for muscle activity can be found and developed. Conscious vigorous walking is helpful for me - Reading Norman Doidge’s book ‘the brain’s way of healing’ – stories of remarkable recoveries and discoveries – in particular the case history of a patient recovered completely from Parkinson’s disease in chapter 2 – and who walks off his Parkinson’s symptoms. How exercise help fend off degenerative disorders. I found that the warrior PD program available in some centres based on group exercise, with a program that is then continued at home, has built up muscle strength and resilience. My previous problems like difficulty getting out of bed or the bath have completely resolved. Yoga stretch as well as resistance building with resistance bands I do daily.
– Realising the gut brain link. I discovered that I was harbouring a gut bacteria called Helicobacter Pylori which is associated with Parkinson’s disease. Treatment with triple antibiotic therapy eliminated the bug and with it went 20% of my symptoms. I then found a research programme Run by Consultants Sylvia and John Dobbs at the Maudsley/Kings Hospital which I attended with my partner as part of a controlled spousal control research programme. I’ve received nothing but courtesy, kindness and expert advice regarding the disease and medication. My very troubling constipation was explained as part of the disease and an effective regimen of diet change extra fibre with Normacol granules seven mg twice daily plus Molaxole twice daily.
And much more of a focus on adding vegetables and the rainbow diet described by Dr Michael Mosley in the clever guts diet book – how to revolutionise your body from the inside out. As well as H pylori I did a full gut screen for pathogenic bacteria called a G I map which also discovered that I had chronic inflammation as well as a number of pathogenic bacteria. My Calprotectin value suggested chronic inflammation with a value eight times the normal. This has now gone back to normal value.
– Instead of Sinemet causing muscle spasm I was advised Silegeline 1.25 mg under the tongue in the morning plus Neupro transdermal patches which I built up to 8 mg daily.d/and the decarboxylase inhibitor in time produce a response in the body which produces o-methyldopa which mimics the parkinsonian symptoms causing extra stiffness and results in the Sinemet being increased. Side-effects inevitably worsen. The drugs that have helped me act on the dopamine system and will enhance the effectiveness dopamine at her muscle level.
– Stress:Take every measure you can to reduce chronic stress. Of course this is a Catch-22 because the disease itself is threatening but add approaches, perhaps like I have done’ and might include yoga, mindfulness and slow breathing – see my U-tube Dr David Beales mindful breathing meditation. I also discovered that I had been suffering from a type 2 REM sleep disorder for 8 years before the onset of clinical PD. 50% of people with this particular kind of sleep disorder go on to get Parkinson’s disease!
– Redefine your purpose and goals and looking after your children providing for them is so important. Can you modify your job so that is manageable as you build up strength? Psychological support from a psychologist trained in helping people with Parkinson’s disease might be available. And your HR department is already thinking of ways to accommodate your work more effectively. Occupational therapists are very skilled at this task. I have been helped by using voice recognition software because my normal fast typing skills are affected by PD.
– This comes to other resources available. I have found Parkinson’s specialist nurses immensely helpful. In Richmond we have Neda Rahmani-Khezri - Parkinson’s nurse specialist. She is kind, skilled and able to tap in to resources such as Integrated Neurological Services based in Twickenham offering the whole range of special classes and including counselling and skilful occupational therapy. For developing my balance and continuing Parkinson’s warrior exercises will be important stabilising factors.
I’ve only covered some of the surface what I have discovered to be helpful.
So there is hope. The dire prognosis that this disease leads to an inevitably down hill course, has not proven to be the case.
I hope sharing your ongoing stabilising program and comments on my story That are supportive for you will be apreciated.
With good wishes,
David
Kew London
.


#10

Everyone is different but sinemet works well for me. Only been diagnosed 15months so hope it keeps working for years. Give it a try and you may find it working well for you.


#11

Hi Clare, I was diagnosed just under a year ago and it does take time to adjust to the realisation of having PD. I was on Rasagaline initially but it didn’t help for long (as it uses what is left of your dopamine more effectively whereas Sinemet helps to replace it) and now on Sinemet and as far as I am aware the only side effect was wind at first but that eased; everyone is different when it comes to medication.
The most important thing is to find a parkinson’s nurse that you can talk to and discuss how you feel as well as medications.
When you feel ready, there maybe a local PD or neurological group with other people that you can talk who are going through similar. Make time for yourself - that is what I have learned. No matter how much there is to do, this is so important. all the best


#12

I have been on sinimet since beING diagnosed at 53 I worked out in the community nursing disabled people in there own homes using hoists and so on this was just too much for me if you have a private pension they might consider paying you off with I’ll health you will be just as well off as they make up your years and like myself enjoy retirement at the moment I’m in hospital as I’ve started to suffer low blood pressure they think it’s to do with the medication and parkinson hopefully it won’t be long until am back on my feet you don’t need the stress of work take care and God bless


#13

Hi Clare heartfelt wishes for you at your recent diagnosis it is a huge shock but please don’t dispair there is help and support out there. Sounds like your life is more than busy and no doubt you are worrying about maintaining your family life to your best ability. My husband was diagnosed 6 years ago aged 69 having had symptoms for at least 5 years prior. He was still commuting and working as a fully functioning engineer at that point and continued to do so until he chose to retire at age 73. He was first prescribed with 24 hour antagonist patches which worked very well, when he first started taking medication it was an amazing difference. He has now owing to a blood infection and a separate heart issue been weaned off of the patches and now takes sinemet 5 times a day the last dose being a slow release one to see him through the night. He has had no side affects from it. The important aspect from our point of view is being able to see a neurologist who specialises in Parkinsons and Movement Disorders with a specialist nurse practitioner. Have to say also that Parkinson’s UK were our lifeline initially and remain our turn to when seeking advice. There are local meet up support groups too. Last but not least, probably easier said than done particularly in your working role and that of a Mum, stress is not kind to Parkinsons. Be gentle on yourself and tell your family and friends would be my advice they will surprise you. Best Wishes Jane


#14

Hi

Im very sorry to hear about your plight.

My wife Alison who is 54 was diagnosed with PD 6 months ago but had been off work 6 months before that due to symptoms. She started with a very low dose of Sinemet (50/12.5) at diagnosis, which has definitely helped with her motor symptoms to a point. She has also started exercising based on the regime provided by her Neuro physiotherapist and this has also helped. She has had very few side affects that are associated but this could be due to the low dosage.

Hope this helps and everything goes ok for you. I would strongly recommend starting a tailored exercise program as this has proved extremely beneficial to my wife

Rgds

Alan


#15

Thank you for all of your very helpful responses. I’m still off work. Following a meeting with HR, they want me to see Occy Health before they can consider having me back. I have that appointment next week. From reading my copy of the referral report, it sounds very much as they are looking for a way to get me out. Midwifery may not be in my future. I’m going to ask for redeployment to a non-clinical role which is not really what I want to do but I may not have a choice if I want to carry on working at all. I have been taking Sinemet (50/12.5) 3 x a day for two weeks now. Effects are variable and not long-lasting so my neurologist wants me to increase the dose to 100/25 3 x a day from tomorrow. I’m finding the positive effects of the meds wear off before the next dose is due. Will increasing the dose help with that, or do I need to increase the frequency of the doses too? No-one ever explained how to space the doses so it’s been a bit of trial and error, mostly error!! Thank you for sharing your experiences with me. It is so helpful to be part of your journey. I will be looking at exercise next week as I’ve found a local class for PWP… watch this space! Clare x


#16

Hi Clare, I responded in much too much detail your first post which moved me and reminded me of my own predicament when I was first diagnosed with PD. I was given very little detail about the options for drug treatment and no advice at all about the supportive therapies. As you say the Sinemet dosages needs to be timed accurately with a longer acting dose at night relating to individual responses. I was started on Sinemet without being given any other options. I realise from the other posts that we are very much individuals but I was beginning to get muscle spasms in my back. I have since found that once-daily dosage of a 24-hour patch of Neu-pro which I gradually built up to 8 mg plus Selegiline 1.25 mg first thing in the morning suits me very well. I think I have been particularly helped by vigorous exercise and joining the warrior PD class in Hampshire at the Tubbs centre as well as daily walking. I also found that I was carrying Helicobacter pylori in the gut and had triple antibiotics treatment with good effect
I’m trying to work backwards to see what contributed to my diagnosis: What do you think contributed to your diagnosis? Best wishes, David


#17

Hi Clare,
Sorry to hear of your diagnosis, it’s a shock I know! I was diagnosed in June aged 55. Started on Sinemet x 3 daily. Felt better after 5 weeks with no side effects. Still have tremor in right hand!!
As stated exercise helps a lot… i’m Still working after being assessed etc!
I wish you well with everything and remember you’re not alone! Let’s fight this horrible disease!!