This is my first post and I'll start with a brief intro.
61 years of age, I was formally diagnosed in April, although have had suspected PD. symptoms for about 2 years. Took about 8 months to get a PD.confirmation with a private consultation and a DAT-Scan: my NHS consultant initially diagnosed anxiety then in a follow up appointment changed her mind to "possible PD". After 2 months wait for a diagnostic scan and no appointment, I decided to book a private consultation which was the best £180 I have spent this year! I have been a keen cyclist and walker for many years and continue to do both of these activities although at a much reduced pace and distance. I'm trying to develop a positive mindset in relation to my condition but am finding it difficult to adjust if I'm honest. My pre-occupation with my general health and my PD. over the last year or so has made me very difficult to live with and subsequently my marriage of 27 years has broken down: not an unusual situation I understand. All a bit negative I know but I have found some inspiration from many of the posts and videos I have read and seen on the Parkinson's UK website. I hope that I can continue this positive trend with exchanges on the forum.
I started on meds. in June with low dosage Madopar 50/12.5 x three per day plus a 5 mg Selegeline. Some inconsistent relief of stiffness and tremor and more normal movements but I find that anxiety is a big issue for me with waves of symptoms possessing me when I get mildly stressed, even in what should be non-threatening environments. The stiffness in my neck, shoulders, mid-back becomes vice-like rigidity with additional servings of tightening throat and chest making breathing laboured. My Parkinson's nurse has suggested I go back on Citalopram which I have resisted as it did no good when I was treated solely for anxiety. I am about to increase my dose to 100/25 Madopar twice a day plus a single 50/12.5 to see if this helps. Has anyone similar experience of these type of symptoms and what works for them?
Hi Captain Kirk,
Interesting to read your introduction.....welcome. Sorry to hear of your marriage break up. Could that have something to do with your anxiety, maybe? I find that stress of any kind makes my condition worse. I have also been on Selegiline and Madopar, since June, after trying other PD meds., which didn't suit me. I feel tons better now. However, you are on a lower dose than me. I take 5mg. Selegiline in the morning and 5mg. in the afternoon. (The recommended dose is 10mg. per day). Also, I was told to take 50mg/12.5mg Madopar 4 times a day, gradually increasing every 5 days, until I was taking 2 capsules 4 times a day. I found this too much and kept getting heart palpitations and dizziness, so I now take 2 capsules first thing in the morning, one capsule about 4hrs. later and another one 4 or 5hrs. after that. At the moment this dosage suits me fine and I can function well. I plan to increase the dose as and when necessary. Before this regime, I too suffered terrible neck, shoulder and back pain and occasional throat tightening. It might be an idea to talk to your PD nurse again and increase your doses, as Levadopa is considered the gold standard for PD.
It's still very early days for you, (I was diagnosed 4yrs. ago, then aged 63), so give yourself time to adjust to this horrible condition and come to terms with everything. It took me over a year to deal with it all in head. Unfortunately no two people will have exactly the same symptoms or react in the same way to the meds. I'm afraid a lot of it is trial and error. Others will probably reply with more helpful advice. All the very best.
Hello Captain Kirk, welcome to the forum.
I was diagnosed in January of this year so still a relative newcomer. Like you, I'd suspected PD for a while before that and was also treated for anxiety (with Citalopram, which didn't help much, and gave me a bad cough - apparently it can have this effect on PD patients!). I'm surprised your PD nurse has suggested you go back on it though, I'm sure I've read that normal anti-anxiety meds don't work when you have PD.
I still suffer from anxiety - as you say, waves of symptoms even with just mild stress. I suspect that my meds make it worse, or even cause it. As Twinks said, PD is weird in that no two people have the same symptoms/severity/progress, so finding a regime that works can take a while. I'm still at that stage and so are you, so don't despair.
It's good that you're still cycling and walking, it's important to stay active (however difficult it can be sometimes!).
There is a problem associated with taking Citalopram and Azilect.
The only safe anti-depressant to take is Mirtazipine.
Many previous posts on forum to look at.
thank you for your very useful reply: I'm waiting for confirmation from the Parkinson's nurse about increasing my dosage of Madopar: his recommendation seems very similar to your medication regime. His first suggestion was to go back onto Citalopram but I've tried anti-depressives before without any benefit so will avoid this. I think your advice about coming to terms with the condition is also spot on: my attitude to my Parkinson's has changed a little for the better in recent weeks and this does seem to made a difference to the symptoms, although I still get very anxious when going out, feeling that I will be unable to cope. Keep calm and carry on is a good moto!
thanks for your reply: it's heartening to know that my anxiety symptoms are not that unusual: good luck with your coping and thanks once again for sharing your experience with me.
if anything the Citalopram heightened my anxiety, so my instinct is to sheer well clear.
Spoke briefly to my Parkinson's nurse and he is confirming a higher dose of Madopar, so I'll try this and see how it impacts.
Let us know how you get on.
I've been taking daily 4 x 67.5 Madopar for a couple of months and have seen some improvement in my anxiety symptoms: I don't thing it's down to the meds. but better emotional management. It's becoming apparent to me that PD symptoms wax and wane on sometimes and hourly basis: any stress or anxiety seems to drive this in my case. Does anyone notice how strongly state of mind affects PD symptoms?
Hi Captain Kirk,
Yes, definitely depends on your state of mind, as to how you feel and the effectiveness of meds. Whenever I start getting stressed, I take time out and go to a quiet place and breathe for 5mins. Inhale for 7 seconds, then exhale for 11 seconds and just think about your breathing.....clear your head of all other thoughts, (if poss!). Works for me, anyway.
My OH is a deeply depressed person, who often turns to alcohol, so I have to keep on top of my own emotions to survive. Being positive all the time, can be hard, but I know if I don't then the PD has won and that's never going to happen in my mind!
Continue pursuing a positive mental attitude and you'll feel better. Good luck and best wishes.
thanks for your reply and helpful advice: I'll try the deep breathing excercises.
First of all may I wellcome you sir to this excellent Forum, you will make many buddies here and pick up usefull info I am sorry your marriage shattered under the strain imposed by BLACKHEART my own almost went down the tubes as a direct result of the Hypersexuality created by parki drugs (anti) but by a miracle we pulled out of the dive and now are strong, I have Duodopa delivering LevadopaCarbidopa direct to my small intestine via a pump which removes the management of varied and many pills, so Im off now so may you enjoy your time on the Forum I recently returned after a black depression and it was uplifting to recieve a great wellcome back I wont stray again
Regards many friend
FEDexlike or FED
Hi, sorry for the tardy reply I've been very busy of late with buying a house and getting a social life back. I've also recently had my ESA stopped so have had to start job hunting. I sympathise with your bouts of depression: I think that I have come out of mine after 2 years or so but still have to deal with anxiety on a daily basis; some days everything seems difficult and the ensuing anxiety fluctuates, sometimes on an hourly basis.
Thanks for your welcoming words and keep on with the positive thoughts.
You have my sympathy anxiety is a terrible gut wrenching feeling when it hits there is no where to run and hide and I have a lot of respect for you working to fend off parky while dealing with Anxious feelings ,you will adjust and learn to flex with the blows its a bit of a steep learning curve but I am sure you will put parky in his cage.
got my job and start on 19th December on 3 days a week basis. Nature of the job means I can work from home some of the time but some travelling to see clients also necessary. My employer is aware of my PD. and seems very supportive. Will report on the experience as the job develops. Just recently am dealing with very tight neck and upper chest/throat: coughing from a cold seems to exaggerate the feeling. I think that the anxiety is making the symptoms worse and my breathing is laboured and swallowing a bit difficult.
Thanks for your encouraging words and good luck with your own issues. Keep in touch.
Thought I would add a further post to update anyone who is interested.
My current medications are: 2 x 50/12.5 mg Madopar 3 times daily: 1 x 5 mg Selegiline and more recently 15 mg Mirtazapine which is an anti-depressant. The anti-dep. was prescribed to combat anxiety symptoms, mainly throat and upper chest constrictions and has helped a great deal. It has helped such that I have recently started work again on a 3 day a week basis. Time will tell how I cope but the first two weeks have gone well.
I have found an increasing muscle stiffness and left arm/hand tremor of late but I am trying not to worry too much about this: in any case daily fluctuations make it difficult to access whether this is long term deterioration or just; well daily fluctuations! Does anyone find that emotional conflict worsens symptoms? I have gone through some difficult marital times over the last 12 months: currently my separated wife and I are trying a reconciliation but the uncertainty is generating some stress which added to the new job is a bit of a strain.
Has anyone out there experienced anything similar and have any words of advice?
Hi my hubby was diagnosed 2 years ago aged 43. He had a very heavy manual job which required an early start each day and he really struggled to cope. He took time off work and we tried various meds but each time he tried to return to work he couldn't cope with the physical demands and he became extremely stressed and poorly. This was compounded by the threat of losing his job which heightened his anxiety and made his symptoms much worse. His tremor was terrible and he suffered extreme pain in his neck, shoulder and right bicep. After some negotiation between my hubby, occupational health and his employer my OH has now been redeployed to a job with more flexible working practices. This happened 5 weeks ago and I don't think it is a coincidence that he is currently much improved so I would agree that stress and anxiety contribute massively to increased symptoms and overall ill health in people with PD.
if it is any consolation we were devastated with this diagnosis but over the last 2 years have grown to accept this and try to make the most of life, after all who knows what is around the corner for everyone and while my hubby is able we are going to blow the savings on golf trips (he loves it) and go on holidays as often as we can. By the way we have learnt that exercise is crucial my OH feels much better when he tries to play golf, this week he has missed this due to the recent bad weather.
i am sure you will feel better soon,
Hi Klou and Captain Kirk,
I definitely agree that stress compounds PD symptoms. For me I just feel exhausted and get a pressure at the Base of my skull when I get stressed about something. Before my diagnosis I used to plough through it but now as soon as I feel stressed I just stop and lie down. Take some time out.
I also noticed that a few days without doing stretching or yoga and I seize up. I drag my leg more and my neck is stiff. I do try exercise most days but some days are couch days! Sometimes you have to give in and start 'tommorow ' .
Hi Klou and DivineR,
thank you both for your replies: it helps just to know there's a sympathetic ear out there. Your husband Klou, seems a real trooper: at least my job doesn't involve a great deal of physical work. I'm glad that he is finding improvement in his new role: good luck! I'm just back from a business trip with a 320 mile round trip: like DivineR I get pressure at the base of my skull which if I don't make a conscious effort to relax gives me a dull headache. This is particularly the case when I drive.
I started a meditation class in December which involves a lot of yoga type moves: I do find this helps although when I am tempted to overdo it (on Monday I walked 4 miles, hoovered the house and did 15 minutes on a stationary bicycle) I stiffen up, get pains in my limbs and shake the next day. I think I'm learning to pace myself. As I type this, my legs body and left hand are subject to a fine tremor: a reaction to today's rigours!
Thanks again to the both of you for your words of advice. Best Wishes.