Hi all just decided to post for first time. Was diagnosed in May this year but feel I’ve had symptoms for a couple of years. I’m 51 and was suffering from lack of arm swing and hand spasm. I tripped up lots but just thought I was clumsy. Although it’s been 3 months I still feel devastated and have mostly kept diagnosis a secret except for husband and 2 friends. Was determined not to go on medication but I’m taking mitazapine as was told some symptoms due to anxiety. Tried to come off and didn’t sleep for 3 days!! Consultant has put me on Rotigotine patches and am currently on 4mg a day. Does anyone else take these and what’s your opinion on them? Also have occipital neuralgia which hasn’t subsided since being on meds. Does anyone else have this too? I’m finding it hard to adjust as I’m so active but knackered all the time. Any
Advice welcome. Many thanks
Hi Coo,
We want to welcome you to our forum community. Please have a look around. You’ll find a variety of posts from our members, including humour, art, and wisdom of all kinds. If you’re unaware, we have a website loaded with helpful material, including archived forum discussions, here: https://www.parkinsons.org.uk/. Please feel welcome to reach out to our free and confidential helpline at 0808 800 0303 with any questions or just if you would like to chat with a friendly and knowledgeable advisor.
We are sure that some of our wonderful members will be able to give their opinions on the Rotigotine patches and may even have some knowledge of occipital neuralgia. However, please keep in mind about our helpline if you do need more help
Best wishes,
Jem
Forum Moderator
Thanks Jen
It feels good to finally get I touch with people who will understand. First step achieved! Many thanks to the reply
Hello Coo and welcome to the forum.
You say you were diagnosed in May, well in PD terms that’s about a second as for most people it is a slow moving condition so you have time to adapt and adjust The early days are difficult, on one hand everything seems different on the other nothing has changed. It can be a confusing time and often a roller coaster of emotion. Best advice is to go with it, whatever you feel or think will be legitimate at that time and there are plenty of us on the forum who have been where you are now and can tell you things do settle and you do find a way to have Parkinson’s as part of your life.
It is perfectly reasonable to think you have had Parkinson’s for a few years, most of us would agree that is our own experience with the benefit of hindsight, but that doesn’t mean when you actually hear the words on diagnosis it is not a shock to most people. You just need to give yourself time to get used to it and find your feet. It may not be the life you saw for yourself but you can have a good life all the same if that’s what you decide you want. It’s not always easy, it can be challenging and frustrating and sometimes you’ll feel like you want to shut the door on the world; the point is it is not always like that and you will learn to appreciate all the good bits all the more. I believe a lot of it is down to the individual and their attitude to the diagnosis and how they see it impacting on their life. For me the key thing is to stay positive and that has served me well for nearly 14 years,
I will just make two comments for you to think about just now. First medication. This is a big issue for many people particularly whether to take it or delay. The choice is ultimately yours but for me it is about quality of life today and if medication helps me achieve that I will take it. Maybe it will cause me greater difficulties in the future due to long term use (the most common concern) but I will cross that bridge when I come to it. The important thing is you make the decision that is right for you.
The other big question is do you tell people or not. This again is entirely your decision and you can only do so when you are ready. Again for me the answer to that question was simple - I told people as soon as I had a confirmed diagnosis and I continue to be completely open about my Parkinson’s. For me it is easier that way. You may think you are hiding it all well and no-one will notice anything is wrong but that is probably not true. There are a lot of non verbal cues in communication that leak out anyway. People may not say anything but will be wondering and I prefer they know what it is and not have them making incorrect guesses. There is no right or wrong way to approach this again, it is your decision and what is right for you but even if you decide to keep it secret, be aware it may not be as secret as you think.
Take it steady one day at a time, be kind to yourself and carry on with your life because life doesn’t stop because you have a diagnosis of Parkinson’s.
Tot
Hi Coo, welcome to the form, can i ask out of curiosity what was the route taken to your diagnosis? I myself have a non swinging arm, spasms and what i would describe as clumsy episodes. Thanks in advance for any response.
Great advice as always, Tot. I would add, find your local PUK group. There will be meetings and support activities. There may also be links to get into very relevant things, like speech therapy, walking football and local exercise groups (and we all know how good exercise is for you). My local group arranges a kind of home grown Warrior session every week which I find invaluable. Also, see if you have a local Parkinsons Practitioners group associated with your GP practice.
Neil
Thanks you so much Tot, Neil and Andy for your replies. It’s good to know that people are positive years on. I did have it all planned out. Was going to continue fell walking and thought I’d grow old without any major issues. A dream I know. I’m the organiser of the family and I work hard and love my job as a teacher. I’ve really slowed down the last year due to fatigue and pains in legs and neck.
Path to diagnosis has taken many years. I was diagnosed in 2015 with fibromyalgia. Was never convinced as seems a lazy label to apply. Was having lots of joint and muscles pains and after trying lots of painkillers i stopped taking them and turned to food and yoga. Worked great for years with the odd blip. I went gluten free vegan and sugar free. In 2020 I lost my mum and sister in very stressful circumstances and this seemed to kick of my problems again. I went back under the rheumatologist who assured me that all fibro. I carried on with diet and exercise but over the last 3 years I’ve noticed word finding problems clumsinesses and lack of balance. At the beginning of this year I began having issues with my right hand which was put down to a trapped nerve in neck. Also having leg and pelvic pain. Went back to rheumatologist who assured me nothing sinister was going on. Had abdomen and pelvic scan both clear. Arm swing had reduced over the last year but just thought was due to trapped nerve in my neck. I insisted that I be referred to a neurologist as my hand had begun to spasm. My consultant conducted his assessment and then asked me what I thought was wrong. I said could be trapped nerve or maybe MS and laughed. He then said those 3 words that I never expected. I took it really badly and although I carried on for a few days normally I fell apart the next week. Rebuilding now but I now understand that I need the medication. Eating lots of fava beans and dark chocolate to name a few bit just not enough. Gutted I took mirtizapine as can’t get off the dammed thing.
Initially tried levodopa but came off as so worried about side effects. On 4mg of Rotigotine prob going up to 6mg. Not sure if this will be better in long run or won’t last long.
I know time will help but my brains telling me all the things i need and want to do and my body’s telling me something else. Still doing yoga and bought a treadmill. Over did it in first week and hurt my knee 
.
Promise I won’t post anything this lengthy again. Good to know there are other people out there as you really are the only people who understand. Don’t feel so alone now I’ve finally posted. Thanks you for positive words. Much love and gratitude
Neil
Can I ask where your warrior sessions are as not much here. There’s a group that meets once a month but I have been advised to avoid for now as most people are older and in the later stages. I’ve read about a PD warrior in Sheffield. Also be good to mix with people. Are they’re groups that meet to from this forum?
From my experience of parkinson, taking medication as per Doc advise is only the best way to deal with it. Anti depresant med are as important as my parkinson med, if not more. they lift my mood big time, When you dealing with tough illness like parkinson, Any help that you get to make you feel better is essential.
Hi Coo,
Firstly don’t give up any of your exercise routines, especially the fell walking. Yes it’s harder, especially the next day when you feel ultra tired, but not only does it keep Parkinson’s at bay but it’s good for your mental well-being. Also did you get any side effects from levodopa? If not you might not get any, so don’t assume the worst just because others have.
For a year after diagnosis I struggled without realising it but since then I have come to terms with it and can do more now than I did immediately after diagnosis. Anyway good luck and all the best Hemyock
Thanks for words of support. Yes I’m slowly coming round to the idea of medication. I’ve always avoided it and tried to treat everything though food Dr Greger style. (Anyone not heard of him worth looking up for advice on whole food) I followed a dopamine rich diet including broad beans that have some active L-dopa. Realised how ridiculous I’d become when found eating banana skins!! It just wasn’t enough hence on the patches now. I was only on levodopa for 10 days but gave me terrible head neuralgia that feels like someone squeezing my head!! I think patches are doing same as it’s back again and really bothersome. Back at consultant next week so hopefully can sort out. Anyone else’s get this? Defo started living for the moment. Hopefully will be able to do some small fells to start but keep pulling muscles. Thank you so much for replies .
Much love to you all thank you xx
Hello Coo
Welcome to the forum. Sorry that you have received your diagnosis, I think it is always a shock no matter how much people have suspected.
I speak as the wife of a Parkinson’s sufferer, who was diagnosed 11 years Approx ago after a 2 year round of seeing doctors and a neurologist (twice) before he paid attention and agreed there was a problem.
The best piece of advice we received is remember you have a choice as to where you are treated. At that time my husband was working in London, we researched hospitals of excellence for the treatment of Parkinson’s and asked our GP to refer him to Kings College London. Now he is retired and we live in Sussex it isn’t so easy to get to but wouldn’t change it as the care and expertise available there is far superior to our local neurologist. The first time my husband saw our local neurologist he said my husband was a man on a mission to find something wrong with himself and dismissed him.
That aside my husband did not feel comfortable with telling people (mostly because he was snd still is to a degree in denial). One friend who he did tell replied well I would never have known you don’t ‘look’ like you have Parkinson’s and that is what stuck with my husband, he still tells the doctor that most people wouldn’t know he has Parkinson’s. Sadly as Tot said people will and do notice, that he has little to no facial expressions often appears to be starring or falling asleep, slurs his words if he can find the word etc etc. I and now he do tell people he has Parkinson’s, again as Tot says would rather they know the truth rather than guess. The other point here is sooooo many people only associate tremble and/or jerking/dyskinesia with Parkinson’s and know nothing off little else about the disease so I feel by opening up to the problem it also brings more awareness to people generally. People are generally well meaning and considerate, happy to give you time if they know you’ve an issue.
One last comment is my husband until
Parkinson’s had always been very anti taking regular medication so the change over to having to have a medication regime didn’t come easy to him. However the change in his well being, his energy and his outlook changed dramatically for the better once he started medication. It took a fair few months to establish what worked for him but once there he has maintained a steady good state that enabled him to continue working as an Electrical Design Engineer until he was 74. He was a keen cyclist and avid gym goer too which held him in good stead, exercise is key.
I do hope this helps a little and your shock also settles. One last thing maybe worth mentioning is your husband is also suffering and maybe not showing it. Help is available for both of you via Parkinson’s UK and other groups such as Relate, take advantage use their help. Good luck m& best wishes
Thanks so much plus 1. Like your husband it has been hard for me to take medication and at the moment it’s hard to separate side effects from the disease. It’s good to know he carried on as normal for many years which spurs me on to live as well as possible. Not sure if this medication is right for me but at some point down the line I’ll find what works.
Holding off telling people as once it’s out it’s out but understand that there will be a time to tell people.
Had a couple of ok days apart from this head cramp and doing some exercise. Does make me feel good even if it’s only for a while. Thanks for advice. Sending you and your husband much love xx
Hi Coo, sorry for the delay replying. I am in North Somerset, and the warrior groups are run by the local group in conjunction with a local expert (hero) Amanda, They aren’t called ‘warrior’ as there is some legal thing, I think, but we do our interpretation of the warrior exercises. There are 4 sub groups in the area of 10 to 15, and we meet for a nominal 2 hours including a coffee break and social time, with a get together every fortnight centrally with Amanda. Where are you? Have you spoken with your local PUK group? There is no pressure to join and they or a neighbouring group should be doing something that you can investigate.
Slightly worried that you have been advised to avoid the monthly group. Most of us are “older” and I don’t know how to spot “later stages”. In our group, some have been diagnosed for longer than me, some are carers, and mostly you can’t tell the difference. The camaraderie is great and the social side is really important. And if you don’t want to attend meetings, there is still a way in to the exercise and “power” (our warrior) groups, speech therapy, walking football (soon), plus fund raisers, local newsletters, etc.
Neil
Hello NeilT
Just a note on your commet ‘Slightly worried you have been advised to avoid the monthly group.’ I can’t actually see that comment altbough it probably did just pass me by. However whilst I would never tell anybody to avoid a support group, I do sometimes make it clear they are not the only way to live with Parkinson’s. This is not a criticism of any group or what they do and if it suits you good luck to you. It is right that people know such groups exist and the support they give. It is sometimes suggested however in such a way that it can make the reader feel it is something they should do and there are a few posts where people have indicated it’s not for them but it seems to be the main support. Maybe it’s not for them, maybe they will come to it later but I think it is important to point out that you don’t have to join a Parkinson’s group. Like I and several others on the forum say very frequently, there is no right or wrong way to live with Parkinson’s only the way that is right for you.
I have tried various Parkinson’s groups over the years. They have been good, well run groups where I was made to feel welcome but it just wasn’t for me. Not how I wanted to live with my Parkinson’s and I am doing fine doing it my way. The comment you quoted may have had this underlying thinking or something similar to it rather than the stark avoid group meetings
Tot
Oh dear, I have faux pas’ed. You are absolutely right, Tot, (the “slightly worried” comment was about something in a post from Coo to me 12 days ago). I’m sorry if I gave the impression that anyone must or even should join a local group. My intention was to say that they can be a source of information and links to many other useful things, e.g exercise classes, speech therapy, etc, and those who use them do not have to be members of the local group. My Monday morning exercise group has about 16 members and only 3 are in the local PUK group afaik. Each of us must find what works for us. But don’t ignore local groups just because you don’t want to join them. Sorry again. N
No need to apologise at all NeilT, but since I started contributing to the forum, I have become very aware that a perfectly innocent remark that makes total sense to you can read totally differently to someone who is feeling a bit super sensitive or worried or whatever at that particular point in time. Support groups is one of those that when written by someone who gets a lot from being a member of a local group can make it sound like almost like an order, something you should do and if you don’t you can feel like you’re somehow not doing it right. Your comment just made me think it might be misinterpreted by someone hence my reply, not meaning to direct it as a criticism of you. We all reply to posts as best we can which is not easy when we don’t know them and all we have to go on is what they choose to write, I frequently feel I am reading between invisible lines in a post and have to hope it is reasonably accurate as it would be awful to think I may have made matters worse. At the end of the day we respond in an efflort to help and support and if a subsquent reply, as I did today, can just make sure as much as we can that the point being made is clear then I consider that the forum working at its best - teamwork if you like because between us and these few posts you have clarified the point you were making beautifully.
Tot
Thanks again Neil and Tot. I’ve just joined a PD warrior group in Sheffield. Had a full
Assessment and found it inspiring. Meeting
with group in a few weeks but delighted I started ball rolling. Yes I agree with both of you that support groups wealth of information and support but also not for everyone. Doing lots of exercise and feeling more positive this week. Thanks for your replies. Still new to all this and need to find my feet.
Thanks for your support
Much love
Coo