Hi all. My name is Steve, married with two (just about) grown up sons who have left/are leaving home. I was diagnosed, unexpectedly, with PD in 2019 after a few GP investigations for what I thought was a ‘simple’ pain in my left arm. It took a few months to get a diagnosis following a growing suspicion by my GP that the cause was neurological. He referred me to a consultant some distance away - I live in Shropshire, and for all the good things that it offers, health care isn’t one of them. The NHS offered me consultations in Coventry or Birmingham, the latter being closer. I was diagnosed in a 10 minute clinic visit and told I would be seen again a year later. At the end of 2020 I got a follow up 10 minute appt. where I was put on my first dosage of co-careldopa. It took until the Spring of 2022 before I was able to have my care transferred to Wolverhampton (which is much closer and easier, travel wise) and be finally allocated a Parkinson’s Nurse, Marie. She is very good and, despite the over 400-strong patient list she has, she offered me a generous amount of time for an initial clinic.
By now my symptoms had started to develop noticeably. I had developed a distinct weakness down my left side, a noticeable slowness of movement, some swallowing difficulties, a loss of sense of smell (and a coming-and-going sense of taste), on-off constipation, disturbed sleeping patterns and occasional minor hallucinations (‘movements’ in my peripheral vision). These symptoms have deteriorated rapidly since then, despite an increase in my co-careldopa dosage, and the changes are causing me some not insignificant anxiety and major interruptions to my way of life. PD is now more concern to me than all of my other co-morbidities.
I’m hoping this forum will be a place I can find some comfort by talking with fellow sufferers, and a place I can find (and, hopefully be able to offer) some helpful advice on the day-to-day of living with PD.
Hi spm i recognirse what you’ve written and some of what you’re going through. My parky’s pyrobably affected me for about 3 years, at least before i went to doctor. I was seen by trainee doc and 10 mins later was seen by more senior doc (now my main contact), within a week I’d had scsn and following week was given results, Parkinson’s suspected.gp started me on low dose co-careldopa, telling me if symptoms improved then probably was parkinsons. Dosage was changed in consultation including me it took almost 9 mths to see consultant who decided my dosage was too high and reduced it symptoms returned. Phone consult took place and he agreed to my fuller involvement with gp in dosage control. Between my gp and me we reached a compromise and for a few months i kept to it, still suffering some symptoms, night movrment, peripheral hallucinations and some leg stutters. I discussed the possibility of a holiday and increasing co-co-careldopa to make for safer travel. I increased my dosage to around my initial high dose (increasing slowly to lessen nausia). That was done early summer snd sice mid july I’ve been on optimum dose. And as I’m typing this outside a cafe/bar in a village in Tuscany you will gather it worked. I’ve been lucky my gp had knowledge of parky and, to be honest i think she’s learning as well. Parkinson’s nurses and consultant is 10/20 mins by car and both hospitals are within 20 miles, closest actually a 10 min bus ride,so for me i fell lucky. Got good trainee gp who spotted something,seen by gp within 10 mins and scanned within 8 days. My gp started me on co-careldopa well before(7 mths)i saw consultant. parky nurse, occ health,physio, speech all promptly actioned my case and I’m a phone call away from them all. Dont get me wrong i still suffer some symptoms similar to you but I’ve learned to work around. I tell people I’ve got parkinson’s, not for sympathy but to let them know i might be forgetful, slower in all things. Lastly use your gp and get proper help and support. I might have one greater advantage over you i live in scotland and can access my gp by phoning first thing and can make in person or phone consults for same day. Sorry for spelling erors phones got automatic spell correction sometimes i miss them
Hi spm i too have parkinsons my symptoms are not so severe as some here ime in Dudley i have a tremor in my left hand arm but am on 8x sinemet a day every 4 hrs still working and body is behaving its self i have a good parkinsons nurse and a good team around me meds don’t always work but i cope well i too tell people I have parkinsons nice to talk sometimes take care
My husband has been living with PD since 2016. We have had reasonable support from gp and PD nurses… Until covid pandemic. We haven’t had a face to face since 2019, the result is my husband has chosen to self medicate on his PD drugs, due to frustration at not being able to reach people for a proper assessment. Fortunately we did get gp visit this week and he has picked up the pieces of the situation we are now in. We also have the PD nurse appointment next week. I live this experience every day with him. The tremors, stiffness, weakness in legs, rem sleep behaviour disorder, peripheral hallucinations, etc etc, we have them all. I wish you luck as you cope with it all. It is a challenge every day
Hi Steve, a welcome to the forum, and a blessing you have an allocated PD nurse. I am a firm believer they are worth their weight in gold and a constant support in the journey. I note you have been diagnosed a few years now, have you been able to find a local support group? Hopefully you will have some responses and posts that PD affects us all differently, including side effects of medications. There is the anxiety that hits at some stages and you mentioned sons in process of leaving, for me personally my symptoms are more evident/increased when dealing with let’s call them blips or hiccups, stress plays a huge part in this and wonder if you have any coping strategies from your PD nurse or OT therapist if you have one? Feel free to PM my OT is part of Wolverhampton Trust they have given me some wonderful practical support and coping strategies. Take care and hope your son’s move goes well
My husband has Parkinson’s, diagnosed in 2012. Reading your post what struck me is that you sound like you’re still in shock and May benefit from talking to someone, have you tried the Parkinson’s helpline or your local health provider for a talking therapy group. The other thing is addressing your anxiety which in itself is a symptom of Parkinson’s and from my experience is a self perpetuating problem driving more anxiety. Anxiety also badly affects Parkinsons motor problems. Speak to your Parkinson’s nurse about your anxiety and also your disturbed sleep patterns if you haven’t already. My husband seems to do best with as little anxiety and stress as possible - granted this isn’t always possible in life. Good luck and I hope you find your equilibrium to go forward.
Yes, I agree with you plus 1, my husbands anxiety has been very high lately(diagnosed 2016). His condition has progressed quite a bit now, but at last we got an updated assessment and referrals to OT and Physio. That’s been enough to lift moods etc. 100% the symptoms get worse with increased stress. Any chance to lessen stressor and keep things calm really does help you cope. Of course no day is the same, but recognising triggers that exacerbate symptoms can really help myself and hubby
Hi spm have not been on the forum for a while but a warm welcome, hopfully you can get some answers from members. found out in 2010 that I had PD. I think it took the consutant 5mins to tell me, what you have got you won’t die from, you have PD. Did not have time to ask any questions as I was told go to the desk and make appointment to see a PD nurse in 6 months time. Once out side the room my head asking it’s self what is PD?? Now there was a lady outside the room with leaflets which had lots of information on, but the lady was great she had at the time had PD for about 10 years, and to me (for want of a better word) looked normal. She gave me advice told me which leaflets to take and which not to read untill my PD was showing it’s self. At the time all I had was a slight tremor. So my advice to you is don’t worry too much take each day as it comes, some are good some bad, but get out there when you can and enjoy life as best you can. I have two sons 2 excellent daughter in laws and 3 grandsons (we can’t make little girls) what I am trying to say is get your son’s involved, there are lots of things for them to do, eg wing walking go to base camp cycling running walking ect, all ativities done though Parkinson’s UK. It might help you to join in Steve thats if you are able, What can you do? not sure what your job was/is but start something new, when my grandson said to me “” what games did you play and where did you live grandma when you was a little girl" so I deciced to write a book about my life not yet got very far if fact just getting married, and my gramdson was only 7/8 years when he asked me the question he is now 23, What I am trying to say is don’t let PD rule your life I know it’s hard but you can always tell us on this forum what ever you like, we don’t judge we advise from own expeirence if we can, so chin up look PD in the face just do your best.