Wag’s story: Ten years of PD

It was one of those weeks that you do not forget in a hurry. It was October 2013, and on this particular Tuesday, I had got confirmation that I was going to be made redundant from my job in agricultural research, which I had been working in for more than 30 years. I knew redundancy was coming but didn’t know when. It was quite sad as I loved my job, but I was excited too, as I had planned out my working future as a freelancer. I started to prepare for all of the things I needed to set up my office for my new career.

Two days later I was in a consultation room with a neurologist. Around 18 months earlier I had been diagnosed with Essential tremor, but it was not getting better. The neurologist asked me to walk up and down the room and within minutes of entering the room I heard the statement that none of us wanted to hear: “You have Parkinson’s disease”. Definitely an “Oh bugger” moment.

What was this PD thing? All I could think of was the vision of an old man shaking in a wheelchair.

I asked: “What can we do about it? Is it going to kill me? Is it curable?”

Medications were the way to go and I was prescribed Levodopa. PD wasn’t going to kill me, but it was with me for life. It’s not curable, but it is treatable.

My consultant told me that I would soon be hearing from Tracey, my specialist Parkinson’s nurse, to arrange an appointment to go and see her. I have learnt over time that Tracey is a complete star, she really knows her stuff. The care and support the NHS have given me at both the West Suffolk and Addenbrookes hospitals, has been fantastic.

Like a lot of things, until it affects you, directly or indirectly, you do not know much about something like Parkinsons. I felt it was important to learn about the disease, so I would know what could be coming and what I was fighting. That night I spent quite a while in “Doctor” Googles office looking through his library. The information is endless.

As I was only 50, I was classed as having YOPD (Young Onset Parkinsons Disease). Learning that some people get the disease in their 20’s really shocked me, not good at any age, but being that young is just so cruel.

Now, Parkinsons is a moving target and is as crafty as they come. It progresses very slowly and you hardly notice a thing until a new symptom appears. Apparently, there are around 40 plus symptoms. It’s a bit like Forrest Gump, when he mentioned what his mother had told him, “Life is like a box of chocolates, you just don’t know what you’re gonna get”. PD is the same.

The first time I got dystonia in my feet I wondered what the hell was going on! My toes started curling downward, feet going numb, a very strange feeling. I contacted Tracey, and of course she knew what to do, and my meds were altered accordingly.

One thing that dystonia has taught me is to cut my toenails regularly. If I don’t, my big toenail slices into the toe next to it. Ouch!

As the condition has developed, my knowledge has increased by regular visits to the NHS website, the Parkinsons UK website and some other UK sites. American sites are OK but a lot are so commercially driven. You can glean some good stuff from YouTube, but care is needed as there are a few presentations that I’m sure come from a story book. So, if you are just starting your PD journey, be careful what to believe on the internet. If its not on the NHS or Parkinsons UK, it may be inaccurate.

I think I now have enough experience to share some of my wisdom. Mind you, this comes from the man who had to go into hospital to have some wisdom teeth put in!

A positive attitude is vital, and it helps if you try not to take yourself too seriously .

You have to own your Parkinsons. I own MY Parkinsons, it does not own me. It’s part of my life, but not who I am.

Try to be organised and try to plan.

Take your meds on time.

Be aware that high amounts of protein in your food can affect how well the meds works for some people.

Try to eat a healthy diet. At Christmas if I eat too much chocolate and fatty foods, my symptoms get worse for the following day or two.

Don’t be afraid to ask for help if you need it. Your Parkinsons nurse, may be your first point of call. Get your Parkinsons nurses email address. PD nurses are very busy and are sometimes not reachable by phone. Using email allows accurate details of meds to be communicated. My PD nurse advised me to experiment with my medication, within the confines of allowed doses etc. This has really helped. We all have different lifestyles, and a tweak by taking meds 10 minutes early or 30 minutes later, may help.

Talk to people. You do not need to tell everyone you meet that you have Parkinsons, but I think family, friends and neighbours need to know. When, and what you tell people is a personal decision.

Try to live the best life that you can. It’s not easy. I love music and comedy, and still attend gigs once or twice a month. I used to dance regularly at soul and funk do’s (although my friends may suggest that what I do is not dancing!). As the PD has progressed, nights out dancing have been very few and far between.

I played local football until I was in my 40’s. Since I gave it up, I have gone to the gym regularly and enjoyed walking daily. Parkinsons has not stopped that, but the gym is now in my garage. There is no doubt that keeping as fit as I can (not to Olympic level, but very close…ish) has benefited me enormously. Admittedly on a bad day I may have to cut short or cancel a session, but I always ensure that I do some kind of exercise. I try to walk twice a day, 10,000 steps when I can. This is sometimes difficult, especially living in the countryside, in winter with no streetlights.

Remember, it’s not about what you can’t do, it’s about what you can do. NEVER give up!

I now find there is never enough time in the day. Once I have exercised and completed any work for the day – I tend to run out of on time, which frustrates the hell out of me.

Each of us Parkies is different. Different symptoms, or different meds, or different response to meds. It’s about what works for you. Over time the symptoms have increased and the number of meds, and with it the dosage, have also increased. I now take around 15 tablets daily. On time has taken a big hit and the tremor has got much worse. Basically, I am at the maximum limit of meds and on time is reduced. Most of the symptoms I have developed are motor symptoms.

Unfortunately, I am now at the stage when the meds start to become less reliable and wear off and are giving me that unwanted side effect, dyskinesia.

When taking meds every 4 hours, I was finding that I was up and down (on and off), all day. For this reason, I now, with the approval of my PD nurse, take my meds in a completely different way.

Around half of my daily meds are taken between 6 and 10 o’clock in the morning. I then take no meds until evening. when I take the remaining meds between 4 and 7pm. This routine allows me to have most of the morning, 7 until around 12 on, the afternoon between 12 and 6 or 7 off, and then on again until around 10pm. This works for me.

The afternoons are tough, but it gives me the whole morning to work, exercise and attend appointments etc. There has to be sometime during the day when I’m off, so this regime generally allows me to choose, up to a point, when it is. It also allows me on time in the evenings to socialise. My friends and family have been brilliant by coming round picking me up for events etc and really going the extra mile for me. I have to say that sometimes, and it’s getting more regular, my Parkinsons wins the day and my plans are thwarted.

One of the main problems I have is sleeping. The tremor wakes me up and I get between 2-5 hours of sleep a night but may wake up 3 to 4 times. My consultant put me on a medication called Opicapone, which has really helped. I can now turn over in bed, and getting out of bed does not take 4 attempts anymore.

Parkinson’s is a challenge every day, it’s almost like having two jobs. Before I had Parkinson’s I had good days and bad days, and it’s the same now. Parkinsons just gives everything that extra dimension.

People tell me that my attitude is good. My sense of humour gets me through those difficult times, but it ain’t easy. Sometimes I regret joining the PD queue at all! There are certain activities that people with Parkinson’s have to be careful with. Cutting your fingernails and toenails being a case in point. But the one activity which some of my friends have raised their eyebrows at, is that I still do my own manscaping! (Google it…) Just because I have Parkinson’s does not mean I can’t look good! Because of the credit crunch I am not only having trouble putting food on the table, but PD means I am also having trouble keeping food on my plate! Mealtimes regularly require the hoover. Peas are not my friend!

When I can laugh at my Parkinson’s, I do, but sometimes I can’t laugh. When it’s 3 o’clock in the morning and my tremor has woken me up every half hour since midnight, leaving my arms feeling like I’ve been digging the garden all night. Or during my afternoon “off” time when symptoms like tremor in both arms and legs, stiffness and pain in my shoulders and neck, stooped shuffling walk and hypomimia (or facial masking) all make their daily appearance. You feel like you don’t know what to with yourself. Basically, when I move around in the afternoon, I look like an emperor penguin shaking an invisible tambourine!

There will be a cure for Parkinson’s, of that I have no doubt. The research being done is fantastic and so very promising but needs long term funding. Until then we all need to make people aware of these conditions by banging the PD drum whenever we can. It’s so important that we raise awareness of the condition, that along with dementia, are said to be the fastest growing neurological conditions on the planet.

Next step for me is deep brain stimulation. I feel so very lucky to be in a position to be assessed for DBS. Firstly, you have to have the symptoms which DBS can improve, generally the motor symptoms. You also need to show that you have a good response to Levodopa. You have to go through months of tests, assessments, MRI scans and meetings before you get the green light. Happy to say that the multidisciplinary team (neurologists, neurosurgeon, and clinical psychologist) at Addenbrookes in Cambridge approved me for surgery in April.

Like many other people I now find myself on a waiting list. The recent strikes may have put my surgery back a bit, but I am completely with the doctors and nurses. They make a huge difference to our lives and deserve better pay.


Hello WagSuffolk
It’s always interesting to me to hear how other people manage their Parkinson’s and the strategies they employ and yours was no exception. Much of what you wrote mirrors my own thinking in so many ways even though our symptoms are different.
Thank you for your post and I wish you well for whatever your future holds.

Hi Tot
Thanks for the feedback. I think you are right. We are all different and have different strategies to manage our symptoms. But at the end of the day you have just got to get on with it. If anybody can benefit in any way from my story, then job done. Wish you well too Tot.

Hi Wag I was dianosed with PD 2010 and I could not have written a letter like yours. you have hit the nail on the head, so to speak, May I please have your permission to use your letter when I do any events for Parkinson’s UK please? You know when people play that game if you could invite 4 people to your dinner party who would it be ? you would be 1st on my list, do keep postings as every thing you say involes us all. Just one thing that you did not mention DBS after a certain age they will not do this. I wish you all the best though when you have yours Stay safe x

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Hi Mary, Thank you for the kind words. Of course you can use my story at events, I would be flattered. Basically, PD is horrible, we all know that, but there is always hope. People are different and I realise that not everyone can view the disease as I do. I’m so happy that my story can benefit people in some way. DBS has age restrictions, I think 70 has been mentioned , but I don’t think these are set in stone. Cognitive problems seem to be the place where the line is drawn, as I believe DBS can worsen these problems. When I saw the surgeon in April, he warned me that the wait could be around a year. I will post details about my DBS surgery as soon as I get them. Best wishes Mary. Take care, Wag

Hello WagSuffolk

I always think it’s worth posting anything that may help, even if it is only one person. The forum is understandably very question based but I do think there is a place for posts such as yours, that simply say it like it is according to your own individual experiences. My own name is quite well known on the forum and I occasionally write what I call an experience piece - the main aim being to record my experience and throw it into the ring not necessarily expecting much from it except it may make someone think a little differently about their circumstances or maybe see things from a different perspective. The link below is one I wrote about obstacles to exercise. It is well known that exercise is important in managing PD and the advice is simple - find something you enjoy . Good advice but not always that easy to do. Having finally got myself sorted, I wrote about it because what I realised was it was not always as straightforward as it sounds. Don’t feel obligated to read it by the way just because I’ve posted the link, that’s just for convenience.

I am currently doing a series of posts on my experience of the process of obtaining the Cue1 and what happened next. I started this because people weren’t saying much other than it worked or it didn’t but I had little idea of really what to expect and if I didn’t that meant others were perhaps wondering too.

In fact your post and Mary1947’s reply have set me wondering about another ‘experience post’ as you both mentioned dbs. I decided not to go ahead with this because the surgery would have been very complex due to my normal pressure hydrocephalus, My consultant and I both felt the risks were too great - although I daresay the surgeons would have relished the challenge as an interesting case study. So I am left with whatever Parkinson’s throws my way… Your comments made me wonder how many others had to make this decision - which is different from not having the surgery by dint of not being a suitable candidate.

I hope you will continue posting as and when the mood takes you. These sorts of posts are I believe, valuable in creating a context for living with Parkinson’s that is not always clear when trying to answer a question.

Hi Tot

The only experience of PD that I can share is my own personal experience.
I enjoyed reading your exercise post. As you say, finding something that you enjoy doing helps. In my opinion, exercise is a choice thing. If a person chooses not to exercise, that’s entirely up to them. Its not the law! Some people have a health “event” (heart attack, Parkinsons, stroke etc) which either kick starts them into starting exercise or increasing their current plan. If you are a person who did not exercise before your diagnosis, it may be that you will not start after your diagnosis, whatever the scientists/experts are saying. Some people say that what’s the use of adding a couple of years to your life, if its at the end of your life. Exercise is hard, but for the feeling it gives you afterwards, its definitely worth it. The people who have not exercised in their lives have probably not experienced this feeling of wellness, which you feel every day. This is not a criticism, people have the choice.
If for some reason I can’t exercise it affects my PD, my mood and my sleep, which is already limited. Exercise is not just for my physical health, but its for my mental health too.

I must say I found your story very uplifting and inspirational. I read the posts on this forum a lot. It’s my husband who has parkinsons, he is not much of a reader, but he does listen when I recount people’s stories/posts on this forum. They have helped him tremendously over his 7years on PD meds. It’s taken him 7years of living with PD to now have greater understand of what helps him with ‘his’ symptoms. Over the years the various neurological specialists have given very different advice, quite frankly, everytime we had a new doctor, they had different advice and comments. Sometimes the same with the parkinsons nurses. Time and research has led J to now understand his body and how he reacts to the meds and everything else he puts in his system. For him, food intake is key. Yes, protein affects absorption of meds, but so does any big meal. Timing of food, and portion control is very important to how well his meds work for him. It’s taken him all this time to see this, but only by experimenting have we reached a place of greater control over this condition!.. I like to think we are in control, but of course, just when you think you are… It likes to throw you off course just to remind you that it’s unpredictable. Exercise has never been his greatest motivator, so new increased regimes are not for him, but we both like to walk when he can. It’s more a mood lifter for me, but I think that is just as important. Regular contributers on this forum (like Tot), direct us to new information all the time. eg the cue 1 device that some are trialing with success is very interesting. Db’s won’t be for him in the future, we just hope the meds and diet control, will ease the day to day. He has also just started Opicapone with very helpful results. Every day new people post on the forum. Information that is positive and helpful and supportive of each other is so important. Thank you for your post

Hello JandC

Thank you for your comments.

Sorry to hear of the inconsistent advice of the neurologists you have encountered. I think they all struggle with the diagnosis of Parkinson’s, but once you have it confirmed, the advice should be at least consistent.

A few things that you say have stuck a chord with me. Walking is great, apart from the exercise, it sorts your head out and gets you out of the house.

The food intake and its timing and portion control.

The way Parkinson’s gives you that false sense of security by letting you think you have it sussed for then for you to walk around the corner and it smacks you right in the face with another symptom. The only consistent thing about PD is its inconsistency!

Opicapone works for me too. I had real trouble turning over in bed, as well as getting out of bed but it seems to have helped this a lot. Does your husband get any side effects? I have found I am getting a very dry mouth since I started taking it, but that’s a minor problem . I tried Entacapone before Opicapone (I think its cheaper!). It made me as sick as a dog…

I am on the waiting list for the Cue1 and have also put my name on the list as a guinea pig to test the device. I took part in a 2-year study at Addenbrookes in Cambridge testing if statins could slow the progression in some way. Unfortunately, it did not work as they thought it might, but they gleaned a lot of experience for future studies.

Trial and error, over time, to manage your own version of the disease is the best way to go as far as I am concerned. It works for me and seems to work for J.

All the best to both you and J, for now and the future. It will not beat us!

Thank You for sharing your story. It’s been very helpful. What is Cue1 please?

Hi Hele

Cue1 is a new device which shows great promise in alleviating some Parkinsons symptoms. There is a waiting list at present. When I checked a few weeks ago, 13000 people were on the list. It costs £295.
Find out more here: https://charconeurotech.com/


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I found this post very poignant, honest and full of hope. I was diagnosed age 50 in 2017. Our journeys are all different but it does us all good to read positive thinking and to feel a “can do” instead of “can’t do” . We have lots of life ahead of us, all being well. Let’s make the most of it

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In case you may not have found it yet I started a post, two years ago this month actually which I called Today was a good day’ recognising all those little and big things, unusual things or anything you like that makes you feel good about the day - doesn’t have to be Parkinson’s related. You might like to take a look some time.



Could not agree more.
Lets make the most of it indeed

Hi Tot

What a great idea!
Celebrating the good things in your day, however big or small, sounds good to me.

DBS Update

On the 23rd October I had my surgery at Addenbrookes hospital, Cambridge with surgeon Mr Rob Morris and his team. The surgery went well and last week I attended the neurology clinic for my first programming session with Dr Buttery and my DBS nurse, Claire. I have to admit that the day was a tad stressful as I had to turn up in the “off” state. This is never easy, but to program my device they had to ensure that the response was from the stimutator in my chest, rather than the meds. I was not in a good way, but means to an end, and all that.

My sister came with me to the session and could not believe what she was seeing when the stimulation was switched on, via Bluetooth. After some testing of the kit, the programming started. My sister described it “like something out of a sci-fi movie.” My tremoring right arm became still. When my left side was switched on, my worst side, again the tremoring subsided and then returned as the stimulation was turned off again. Ok, I still had a slight tremor in my left arm and my right leg but what a difference. I got up to walk and it was the best I had been for a long time. My stiffness had disappeared and my slow movement, gone. I was then given medication, 50% of my normal dose. It was then suggested I go for a walk and come back an hour or so later, to see if my meds had improved things further.

When I returned later the slight tremor was still there and the only side effect I had was a slight feeling of numbness and pins and needles in my hands and feet.

My next appointment is in January for further tuning.

My slight tremor returns occasionally, but nothing compared to before.

Over the following few days I have come to appreciate what effect the stimulator in my chest is having. Before the switch on I would wake 3 or 4 times in the night because of the pain from the continuous tremor and laid there for hours. It was pointless getting up, I could not do anything because of the tremor. Now I sleep better and I can get up and start doing things, as the stimulation is 24 hours. In fact I’m now having to set my alarm!

I used to take meds 8 times a day, now its down to 4 and 50% less Levodopa.

Now going out in the afternoons is normal. But before, because my meds “ran out” for periods during the day, afternoons involved sitting in a chair shaking. The last few days my car has hardly been in the garage!

Work is now an every day thing and not just when it could fit in with the PD.

Its early days, and far from perfect, but I feel am becoming ME again.

I am so grateful to the neurology and neurosurgical teams at Addenbrookes. From the start they have stressed that the surgery is not guaranteed, its not a cure, its about my expectations and that there are risks involved. Basically, it was a gamble and the risks are there. Would I do it all again? Damn right!

Reading accounts of some people who have had DBS surgery and it not meeting their expectations, saddens me. I almost feel guilty that mine has worked, up until now, as it has.

DBS is a journey and not a short one. Mine has gone on for almost 2 years. The tests and assessments along the way are vital for so many reasons, and can be far from easy.

The team at Addenbrookes have given me my life back and the best Christmas present I could ever have wished for.

Merry Christmas to everyone.


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It was lovely to read such a positive post, I am delighted for you as I am sure most contributors to the forum will be. We all know that not everything works for everyone, and even when it does work there are varying degrees of success, so I think most, like me, would just share in your pleasure that this procedure has been successful for you and long may it be so. I can understand your saying you feel a little guilty at having such a positive result when others don’t, but you’ve no need - it is simply the nature of the beast and you might well argue it’s unfair but since when has life been fair? My circumstances have led to my decision not to undergo DBS surgery, which means I will have to take my chances with whatever Parkinson’s decides to throw at me; but that doesn’t mean I can’t share in your pleasure at such a successful outcome, even though I know I won’t even have the opportunity to try it. So just enjoy getting your life back and let the rest of us be happy for you.

Thanks Tot, for such a positive reply.
I still have Parkinsons and it is going to get worse, but this surgery has knocked back some of the symptoms so that I can live a better life.
Anybody who has any questions regarding my experience with DBS, please let me know. DBS has hardly been heard of by people outside the Parkinsons community and it can be a grey area inside the community. One thing I would say is that if you have a dominant tremor, look into DBS. There are a few hurdles to jump to get the surgery, but you have to at least look into it. Research the subject so you now what is involved. We are sometimes scared of things when we don’t understand them. Researching the hell out of the subject helped me no end.