What's your #Parkinsonsin1?


#1

It's Parkinson's Awareness Week! During the week, let's join together to get the UK talking about Parkinson's. During 18-24 April, we'll show how just a small thing can make a big difference to someone with Parkinson's.

Across the forum and social media we're highlighting the things that make a difference to life with the condition using the hashtag: #Parkinsonsin1. Get involved by sharing your stories with us here. Tell us about one thing that's made a difference to your life with Parkinson's. If you'd like to share a photo, email it to us with your story to social@parkinsons.org.uk. You can also share, join in the discussion and read others' stories on Facebook, Twitter or Instagram
 

Be sure to look out for news coverage across the week. You can also find events happening near you at www.parkinsons.org.uk/pawevents


#2
hello all the dx at 47 was devastating but the main thing that has helped me is my relationship with this charity. Aside from support it is the friendships I have formed since. I count some of the staff here as my personal friends.Also I recommend learning about your condition this can only really help after all knowledge is power. BB.

#3

Thank you Betty Blue for sharing, it's really good to hear that Parkinson's UK has helped since your diagnosis.

Thank you too to Twinks, who has shared her story by email:

"I was very distraught when I learned I had PD, back in the summer of 2012 and it took me a year to come to terms with my situation.


My next door neighbour had been also diagnosed two years earlier, so she was my first port of call when I received the news. She has been my 'rock'. She introduced me to another friend of hers with Parkinson's and the three of us now meet regularly for outings, walks, coffee, swimming, chats etc. We particularly enjoy rummaging round Charity shops!


Without these two friends, I would feel alone and frightened. We talk freely about our condition and support each other's needs. They have truly made a huge difference to my life and help make the condition bearable."

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#4

Just dx 2 days before last Christmas, not a good time but was not surprised.Living alone (apart from a vocal black and white cat ) makes me fear for the future at times especially as my family live some distance away.

But hey I've reached 71 before getting a dx so will try to make most of  the time I have now.


#5

Thank you to everyone who has shared their story and told us what has made a difference to their life with Parkinson's.

If you'd like to share a photo with your story please do email it across to us at social@parkinsons.org.uk and I'll add it to this thread. 

Sky Sports presenter Dave Clark, who is living with Parkinson's, shared his story about how cufflinks represent Parkinson's to him.

"I can still remember the occasion so vividly. Two years after my diagnosis I'd still told no one at work and had successfully covered up my symptoms. But on this particular night I'd got changed backstage at a World Title Boxing match in Glasgow and was trying to do these cufflinks up knowing I was due to present live on TV in just a few minutes time.

"As the clock kept ticking my fumbling got worse and I just couldn't get the links done up. It was in that moment, hiding in a cupboard, desperately fighting those flapping cuffs that I realised I just couldn't do that any more. The next day I went to see my boss who was absolutely brilliant about it.

"But to this day I never see a pair of cuff links without remembering the desperation and what it was like trying to hide the fact I was living with Parkinson's.

"My one regret is that I wasn't more open earlier and I'd certainly say to others,don't hide your fears. When you share them with others, you'll be surprised what a relief it is."

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#6

 

Before diagnosis, before i knew what was wrong with me I felt like I didn't know myself, like i was two different people, it took a year to get diagnosed i'm now 2 yr's on from it, at diagnosis i was simply given a little blue card with directions too the Parkinsons page & forum.

Although, it was scary & daunting, it was also a massive relief to know what i'm fighting, what effect's me every day and ways round it by the experiences of other sufferers, Life has been personally tuff  recently with a loss of loved one & living with Parkinson's  it effects every aspect Our lives, but with Support of family, friends, other's with Parkinsons, & the professional side of things support worker and Parkinsons nurse, our back bone of care I may just come out stronger on the other side.

I also take part in a Local group for younger working age sufferers Just like me when i can, keeping my personal aspirations and Goals in focus.
 


#7

What a lovely photo BB x


#8

I think Dave Clark's cufflinks story strikes a chord with a few of us. I have a pair of trousers with button fly instead of a zip. I don't wear them any more since the time I was trapped in them with off state fingers.

While I'm here I agree wholeheartedly with Betty Blue's observation about Parkinson's UK. I have been really impressed by the whole organisation. Parkinson's UK and this forum in particular have been a great support to me while I was coming to terms with diagnosis.

Thanks!

EF


#9

My first reaction to the news that i had the old "Parky" was at last i have the reason for feeling like *^%* for so long!! Many years in fact i had visited the doctor telling him that i was certain i had Diabetes, i was so shaky and weak but eating did not help the symptoms very much. Looking back i did have every classic symptom of Parkinsons including the loss of sense of smell, in fact i returned 3 bottles of perfume to various manufacturers implying that they must have changed the ingredients! I had been hit by a taxi abroad in 1990 crossing the street and had endured fractures (nobody told me that they drive on the other side of the road)!!! anyway i became  used to quite a lot of pain over the years but the PD most definitely homes in on my weak spots.

My Husband was shocked and very upset when i was diagnosed, we left the hospital and got home and had a good weep together......then i said "C'mon we were going dancing this afternoon" and we did, it was the best thing for us to do. We didn't tell anyone other than our family for ages...and the reason was clear....because as soon as we did then i started to be treated differently by some...not all. In hushed tones my Hubby would be asked how i was? i became so fed up with this that i finally said " I might have PD but i am not flippin deaf! nor daft! i am still the same person." It became so upsetting that we left our dance class and never returned. Our true friends are just that ...true friends and also the support, laughs and encouragement that i have experienced since joining the Parky forum has been wonderful. Although we have never met, i feel i have made friends for life.

Luv Dolly x

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#10

#Parkinsonsin1 I wrote this poem to describe how much being a part of a forum has helped me through. Thank you. -eshelleyk

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#11

Thank you all for sharing your stories. In my 6 years at Parkinson's UK, I've had the pleasure of meeting some of you. Others, I hope to meet you soon. 

I'm usually the person that pops on when there are problems though we've had some great conversations over the years. This forum has been very important to me and to many of you.  I've been pleased to be a part of it's history.

My #Parkinsonsin1 is a phone.

This is where my journey with Parkinson's started. I started at Parkinson's UK as an advisor on the Helpline and a forum moderator. It was really new to me as I'd previously only given advice and support to refugees who were facing the hardest time in their lives.

Though the situation is different, I learned quickly that empathy and a listening ear goes a long way whether you can never return home or whether you can never return to your old self.

Years on, we've come a long way on this forum and I now lead a team that looks after social media as well. We're teaching a new generation to spread the word, to put themselves in the place of the person they're talking to, that's empathy I guess. A bit different but still the same.

Lots of people think that digital is about social media and apps and such. But for me, it's getting to share our stories and make sure that we're the hub of a community that we're all a part of.

And I'm still listening.


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#12

It was a long time before i was officially diagnosed with PD, but knew that i had something serious so persevered wiith the medics, you know your own body and what it should be feeling like. I wont bore you but i have 3 conditions all of which i knew i had got before being diagnosed. The strange and quite bizarre common denominator with these conditions is that i have seen a poster on a wall everytime and thought, i bet i have that!  and i did.  Ooh i bet i have that! and i did!. So i don't look anymore!  I went to visit someone in the Maternity wing the other week, you can imagine what posters i saw on their walls!  lol now that filled me with terror hahaha.

I told my friends, family and employer very soon after diagnosis, i wasn't worried how they treated me afterwards because i am a strong independent person who has always taken control (BOSSY) some would say. So if i appeared to be coping then there  was no problem!  It can be hard for those around you to watch, my mum is 84 and fit as a flea thank goodness,  she is a size 6/8 so very small. We took a load of rubbish to the local tip one summers day so before i could stop the car my mother was out and boot up, she was trying to dispose of everything so i didnt have to exert myself. I had to laugh at the sheer determination that she was going to do it all. I said ' look mum i am fine let me help'  'No No No you can't manage this' said she dragging a bag larger than herself.  I had to get bossy by then or hold her ankles to stop her falling into  the skip. The looks we got from onlookers, what an awful way to treat your elderly mother! let her do all the work.  We had quite a laugh on the way home .. So remember..... don't look at posters and always have someone twice your age to do the heavy lifting! LOL 


#13

Dx aged 49 in 2014 - had already slowed down but wasn't, and never will be, ready to stop.

"Realign your fitness ambitions" - that was the quote from the Neurologist when I talked about some of the physical challenges I still had to cross off my bucket list. Not likely.

OK, so I regularly break down to the point I can't walk when I go out for a run (and I use the term run loosely compared to the past), and Mrs Drewster, an absolute diamond I might add, responds to my distress call by coming out to pick me up and drive me home, but that will never stop me. Ever. They'll have to strap me to a wheelchair if they want me to stop trying. Until the day I physically can't, I will, and that goes for everything. Pain is temporary.

As per my quote of the day, Parkinson's is a life sentence, not a death sentence. Remember to live.


#14

To True keep it up mate we all have fight in us to kick this c*** into touch we just do it differently.

 

BB xx


#15

 I enjoyed seeing this photo of friends all out having a good afternoon tea, (what a great selection of cakes there too) Yummy! How nice it must be to have found good friends like these that all understand & support & help each other. I know that's what I lack very much. 

I joined a group that wasn't just for people with Parkinson's but other long term health issues too, unfortunately when it finished no one seemed to want to stay in touch or even really was that talkative during the group which is sad. I was so hoping that something might come from it.

The nearest Parkinson meeting place from me is approx 15miles I guess, but because I suffer with other problems like bad panic attacks & another problem which I won't go into as it just upsets me as well as embarrasses me too. This Parkinson meeting place that is a fair distance from me, would be too difficult for me to attend as it starts at 10am & my health problems are always bad morning times. I would love to have friends like you have that I could go out with & more importantly know they are supportive & understanding. Most people around me, don't believe in talking about it, they tell me to just forget it, its not life threatening & I should just get on with my life. Talking or thinking about it will just make me more aware of the problems. Uuumm I don't know about that one! It must be just nice to know your with someone who supports you understands your bad days & helps you manage. Its great you are all enjoying having each other around & just being there for each other. 

Carry on having fun & I hope you all continue to do well. (I can picture you all now sorting through all the charity shops then enjoying afternoon tea & them cakes!!!! Lol. Take care. xxx

 

 


#16

Hello Suzi, 

I know how you feel Suzi, I was dx Christmas Eve 2014. I think that was one of the worst days of my life! And certainly the worst Christmas I have ever had, and believe me i've has some bad ones!!

I couldn't even return home after my hospital appointment, I just got on a bus (good for me as I have panic attacks and don't find that easy) I ended up sitting in the Mall, with a new lipstick, and a cheese and tomatoe sandwich and just crying with this poor man sitting next to me. He must have wondered what on earth was wrong with me! I don't even remember buying the sandwich or the lipstick! Just as well I did get the sandwich though as that turned out to be my Christmas lunch the following day, (that's another story though!) 

Like you Suzi, my family all live along way except I do have a sister about 30mins or so away, but she has a busy life. I know what you mean about fearing for the future. I do too, but keep strong and its not always easy I know but try to think positive. I know when I was first dx, and told to contact this site by the nurse who was with me when the Consultant told me Xmas Eve, it has helped me no end. Especially Betty Blue did, she was the first person I met on here, & she really encouraged me and made me feel that January that support is on here. 

I hope your feeling good now, take care. Autumn leaves.


#17

Hello Barnowl1,

Just read your story, it did cheer me up and make me laugh. You sound like you are dealing with it all very well. I guess we have to just keep positive and enjoy good days and put up with the not so good ones.

Its been a tough time for me lately, I am not feeling good. I sa

w my Neuro Consultant 2weeks ago and he has said he thinks I have Non Motor Symptons Parkinson's!!? I hadn't heard of it until he mentioned it.

I hope your still well and your Mum is too bless her, she sounds like she could run rings around us all! I'm sure she would me right now. LOL. Keep well. 


#18

Hello Just wondering if anyone else has been told they have Non Motor Systems Parkinson? That is what my Neuro told me 2weeks ago when I went to see him. I hadn't heard of it up until then. 

He seemed pleased how i'm exercising & told me he doesn't think his dx me wrong!! but its possible he may have!! But because the Pd medication has made my balance & walking alot better he is pretty sure that I do have Pd, but he really now thinks its the Non Motor Systems Parkinson. He has left me on my medication & seeing me in 6months, (that said I saw him last April, & was meant to see him in 6months, but I received a letter in October saying due to unforeseen circumstances they have to cancel so my next appointment ended up being a year, as I saw him April the 13th just gone. 

I am noticing I get very breathless lately, & tire quickly. I set myself list for jobs to do each day, & use to fly through them all then do something else, now I don't often get through half of them. Another thing I notice which really makes me feel dreadful, & i'm wondering if anyone else has this, or is it connected with this Non motor symptom parkinson's? I find after eating I become really weak & feel so nausea & just unwell & unsteady. Its almost like i'm drifting into a coma like sleep, I often have to go to bed & lie down. My heart races, my colour goes out of my face, its a horrid scary feeling. Is this to do with the Parkinson's I don't know?? I wonder if I should take my medication about half an hour before eating. I also know I need to be more careful about eating regular. 

Today has been one of those days, I started off with high hopes of doing this & that around the house then having lunch then going into town to do some food shop, but I did a little housework, then sainsbury's deliverd my shopping so I packed all that away. Then rang my poor brother who this Christmas has been dx with Pulmaney Fibrosis, (think i've spelt that wrong so apologies) He is desparately ill, so I call him every day to try to keep him positive. I then put the shopping away, had my lunch, & then it came over me again. My heart was racing, I was breathless, I felt I was going to vomit & just felt the life was going out of me. So I sat down, then layed down. It passed as it oftne does after an hour or so. I didn't go to town as just didn't feel like it. I just don't know what to make of it. My Neuro Con. Has suggested due to my breathlessness & heart racing, & especially after I told him about my brother that I get my GP to xray my chest & lungs & have an ecg done. I have been having these spells though before I was even dx, I guess i've had them for about 5years now. They seem to think it was the start of the pd?? I just don't know what to make of i


#19

Autumn Leaves


It sounds like you're in a bit of a state! there are professionals on here who would answer some of your questions and steer you in the right direction for help. Having PD is bad enough with the correct diagnosis and meds but you seem to have half a diagnosis and no benefit from treatment, which shouldn't be happening. If it were me i would either insist to see my consultant again or go through your GP. There could be a simple explanation to why you,re feeling so poorly

I hope you get sorted (be pushy)

Barnowl1.


#20

Hi Barnowl1.

 I think I will make a Drs appointment this week. When I saw my Consultant 2weeks ago, he seemed happy with the way I was & I must admit my balance is def. better since taking the PD medication. Its just I feel so weak & just unwell after eating, & my sleep is bad. I did tell him this & that's what made him say he thinks i've got Non Motor Symptoms PD.  He said that would account for all these other health problems i'm  going through, & its just part of having PD! He said he is leaving my medication alone as he feels its right for now until he see me again in October, he went on to say his sure his diagnosis is correct about me having PD as my balance has improved since starting the medication. I am lucky in as much as I can exercise quite well, but its just this nausea, & weakness & other issues that aren't obviouse to anyone just looking at me.My mouth is so dry, my lips get sore, I feel so tired & get really bad pains in my head. I will see the gp & see what they say.

To look at me PD is hard to see, but I know my body isn't how it use to be or my head.Its not helping that I suffer with panic attacks & find getting out to places hard, I am quite low at the moment too if honest so that's definately not helping the situation. It was a good day when he saw me, & I was upbeat too mentally, its not like that now though, I try to keep positive, as I think & have learnt in the time i've been dx that really helps. Its not always easy though.  

I keep thinking of my lovely dear Mum's moto she alwasy's use to say, there is alway's someone going through a harder time or worse off so always be thankful & count your blessing.

Thank you for your reply & advice Barnowl1. I appreciate it. Rita.