Yes I so agree my falling I S getting worse again
It is also rotten that you can’t do the things you used to
Like going out shopping on your own
And not being able to ger a bacardi on a weekend
This P D is just so rotten
Don’t even drink these days so cannot blames the on the G & T’s
See my consultant early next month, hoping he will be able to advise me or at least will review my medication
Must try and stay as positive as possible!
your comment about PD invading one’s life resonates very clearly. It seems to govern every waking ( and most non waking ) moment. I now pretend with my daughter that things are better than they are… I feel gulity and and embarrassed about any incursion by PD into my time wiyh her and my granddaughter. Keeping the act going is EXHAUSTING! take care - best wishse Cled
Hi thanks for your reply. I had never heard of parkison’s +. Good lugk to you and it would be interesting to know how things go for you. Take care Cled
Thanks for your reply - sorry your falls are so frequent. Sounds horrible. Take care best wishes Cled
Hi thanks for your reply. I really appreciate you taking the time. Sorry about the weekend bacardi in particular! Take care best wishes Cled
Hello again Cled, your comment reminded me of another issue - and that is why Parkinson’s is such a ‘different’ illness in that it seems somehow shameful to have it, and we all spend exhausting hours, weeks and months trying to hide it! Why?! My friend has MS (not very obvious) and I often hear her explaining that to people when she needs a bit of help - but I myself never ever begin a sentence: ‘I have Parkinson’s’ - I may say I have a ‘bad leg’ or ‘bad hands’! It is as though if I do mention it, it will quickly take over somehow. I don’t want to ‘own’ it. I have noticed this in others too - but as I say, it only seems to apply to Parkinson’s. When people eventually know what I have, there is always an appalled silence in the air. What are they thinking, I wonder?..
You have opened a very important area of interest for me. I too have stopped trying to explain anything about PD. At the same time I follow up research as much as I can - the Journal of Clinical Neuropsychiatry and Clinical Neurology makes availble some research papers that have informed the treatment and support we receive from our excellent clinicians. It is there that I first came across the term “pan - somatic” to describe Parkinson’s Diseases - it affects every part of your body and evry aspect of functioning.
And yet … the last time I mentioned Parkinson’s Disease to a neighbour the response was " oh yes that’s where your hands shake a bit isnn’t it".
No point trying to explain the huge physical impact , never mind the cognitive ipairments. Have you ever tried to engage anyone but a neurologist or parkinson’s nurse in conversation about the effects of the formation of Lewy Bodies from alpha synucleic acid (and other protiens). Just watch people’s eyes glaze over as they make their excuses and leave.
Oh and I had another fall yesterday.
As to your excellent question “what are they thinking” ? when they are made aware you have PD, I honestly think that ignorance of the often hugely disabling, life chaging condition is the point.
Parkinson’s Disease changes lives. Let’s be honest life is still good but in a very very limited way.
Take care Tamsin
Best Wishes
Cled
my consultant is so optimistic, but reading this forum is literally depressing. it makes me so apprehensive, does any one else feel there’s not much point in going on?
Yep.
Often get that “3 a.m. life is as good as over moment” during so many sleep interrupted nights. Interrupted for so many reasons, mostly realted to PD. Keep trying to be positive and do healthy things.
Keep trying. Often seems hard, even pointless I know.
What else can we do? well, apart from the obvious.
Please take care
Cled
Totally not, there is always a reason for going on. We may have PD but we still have a life, yes it might be more challenging some days but I have found very little I can’t do that I wasn’t doing before. Have made changes so I can some of which I don’t like (airport assistance being one) but they are in the end worth it so you can still enjoy yourself.
Keep strong and try to continue as before but ask for help or adjustments so you can. Yes at times the forum can be or appear to be depressing, however I usually find something to make me smile or I think I could try that.
Stay strong and try to be happy as much as you can 
1 Like
Hi @namibia, 
I see you’re a new member to the forum so welcome to the community.
This forum is a safe space for anyone affected by Parkinson’s which means there are a lot of raw and honest discussions that are not always on the bright side of things. But equally, there are a lot of threads (check out our creative corner) that are filled with good humour, encouraging testimonies (check out the PD warrior threads) and a lot of peer support which ultimately makes this a great community for people like yourself to not feel alone.
Feel free to explore the forum further and if you need additional support or information, we have a team of friendly and highly knowledgeable advisers via our helpline on 0808 800 0303.
Best wishes,
Reah
Forum Community Manager
After seeing my consultant re my falls up to at least 4 per day. It was decided to increase my sinemet. Having taking the increased medication for just 5 days, felt terrible. So decided to stop al medication. So far my falls have reduced to most days nil. Feeling a lot better about live with Parkinson’s . My consultant always asked how do I feel being on sinemet. I really didn’t know if the medication was working. Now know for the time bring I’m better not being on the sinemet
I too fell without warning. the clinical psycholigist said I might have overloaded the brain cells by being overy busy , and the cells went into shut down. possible?nn
that’s what they told me also. seemed to be when I was feeling most normalnand alive
Still managing without taking any medication., since September.Have now had a brain scan, recently
Waiting for appointment with my consultant to discuss the results. Feeling stiffer and then falls have started to increased. Hoping for something positive to come out of my next consultant appointment
Diagnosed in June, but had symptoms , falls, and lethargy before.
now finding magic cebenedolpa pills don’t work, especially since breaking elbow twice due to wipeout falls. very apprehensive about future. both foe me and my family.
Know what you mean, having falls makes me lack confidence. Have previously used the NHS after having falls. Have today had another fall and have hopefully only badly bruised my foot, hopefully nothing broken. I’m a worry to my husband & family. Not sure where it will all end, but must carry on.
What else can we do
good luck with your consultant jbmad. mine was very cursory , maybe because this was with the NHS not private as before. there seems to,be little communication between. different depts.
personally, I am losing faith in things improving at all, but hope better medication might help, if not, what?
does madopar work?
Hi Namibia,
Oh no, I’m really sorry to hear that you’ve broken your elbow - I do hope you have been seen by a medical professional. It’s completely understandable why you’re feeling apprehensive about the future, but I hope you have felt the support from the community and please remember that we are to help you in any way we can. I’ve mentioned the support of our helpline before so please feel free to give us a call if ever you need more support.
Best wishes,
Reah