Really sorry to hear you news auumnleaves. I never know the right thing to say at these times, but am feeling for you.
Am a Sussex girl too.
Porthos
Gee whiz Autumn
i really feel for you on this one life can be so cruel ,you just do your best to get by this chapter of your life because you must look after your self . We are all here for you anytime you want to unload , sometimes it's all you need to make you feel a wee bit better good luck to you hope all goes okay at Cornwall .speak soon deepest sympathies
Ian xx
Sorry to hear of your loss Autumnleaves,
Talking is the best medicine for a grief so talk and write as much as you need.
Take care. Cc
Oh thank you so much Porthos, It is kind of you & I appreciate your message. I will have to private message you or you me we may live near eac
h other! That's if I remember how to private message!! I am pretty hopeless with the forum. I often can't follow things.
You take care & have a good week. After my brothers funeral I will be on again. x
Hello again Ian,
Thank you so much for your kind words, I appreciate it very much. Its such a hard time right now, & your right to know I have friends on here that are around for me to talk with is so helpful. It has affected my pd which has also worried me, but I keep as positive as possible & hope things will calm down as time goes on. Thank you again Ian, its so kind of you to offer to be someone to listen to my, or should say read my post. It does help to talk.
You take care also, I will be in touch again soon. I hope your week ahead is good. Autumn leaves,
Hello Cheshire Cat,
Lovely for you to reply to me, & thank you. You are right it does help to share & talk. I do worry I can go on sometimes with long post, but it helps!
I hope your well, & you have a good week ahead. Take care.
Hi Autumnleaves,
So sorry to hear the sad news about your brother. I lost my lovely Dad in April, so have some idea as to how you are feeling. You're right, the stress of it all makes PD symptoms much worse and the depression doesn't help. I think we just have to cry when we feel like crying, talk when we feel like talking, shout when we feel like shouting and hopefully, gradually we can learn to cope with what has happened. I don't believe in 'time being a great healer'. Time just numbs the deep feelings of loss a little. Take care while you go through the grieving process and remember all the happy times you had with your brother.
Twinks.
Hello Twinks,
Thank you for your kind words I appreciate it very much. You are right time just seems to numb these painful feelings. I moved to Sussex to be near my family after a very difficult time that I had gone through. Shortly after I moved here my parents also moved back to Sussex to be with me & the rest of family. But its been hard since the move! I've lost my lovely Mum & Dad & my eldest brother (he was just 63) my lovely little dog who was such a friend & support to me i'd had him almost 18years. Its feels like its been loss after loss! My health hasn't been good for many years, i've battled with a couple of health issues which I find hard to talk about even today. Then 3years ago I thought things were looking brighter, as the 2 health problems that had really been a battle to rid myself of finally seemed to be lifting from me. And then I started to feel unwell, as I hadn't ever before, & Christmas Eve I got told I had PD. It felt like a real smack in the face! The past year i've tried to keep positive & found people on here & the PD staff so supportive & helpful, but when you get a shock everything seems so much harder to cope with, and you feel your right back down rock bottom again. I'm a bit of a mess right now, I avoid people as much as possible because they have no idea what i'm feeling & if they start to chat to me at the bus stop or shop I end up tearful & in a state. Its embarrassing for them & me. So being able to chat away on here is really helping me.
I appreciate the kindness shown, I am sure things may be easier as the summer days come. I hope my PD symptoms do at least calm down & I feel more strenght, even if my sadness & depression doesn't.
Its a nice sunny day today here, I hope it is for you where ever you are. Enjoy your day Twinks & thanks again your post has been helpful.
You keep well & take care.x Autumn leaves.
Hi Autumnleaves,
I'm so sorry to hear your sad news. As others have said, please do post here if it helps, and write as much as you need - that's what the forum is for. And please remember that we're here if you want to talk on 0808 800 0303, our advisers can also put you in touch with other organisations who can offer support at this difficult time.
Take care,
Joanne
Hello Joanne M,
Thank you for your post & helpful advice. I got back very late last night from what was a long trip to Cornwall & an emotional day. It was my dear brothers funeral, I hope he is free from from his suffering & resting now. It was a nice service (well I say nice, as nice as a service for a loved one can be) It was a very small village church & then afternoon tea in the village hall.
I shouldn't be thinking of myself today, but I do feel so tired, I can't understand why since having pd I find travleling long distance really wears me out so much. Its 12.50 & i'm ashamed to say i'm not even dressed yet & haven't done a thing apart from make some breakfast. Is it me or does anyone else find traveling long journeys seems to make them so weary the day after?? Or perhaps its just been all the stress that has built up the past few months taking its toll!! I don't help myself I guess as i'm inclined not to eat well when traveling, or if I have to attend an event such as yesterday. Apart from a breakfast at my sons yesterday morning I think I only ate 3 small sandwiches & drank water all day. Stupidly when about an hour from home we stopped at a service station & I thought I would risk a slice of lemon sponge & cup of tea! Big mistake that was, especially as it was late! Goodness did it give me tummy cramps, & feel nausea for the rest of the trip! I don't think i've ever seen such large cups of tea as what Starbucks serve them in! I could hardly lift their cups it was so heavy let alone drink it all. I must have had a 1/4 of it & that was enough for me.
I have noticed since being dx with pd I have gone off tea alot. I never use to touch coffee loved the smell of it, but just didn't drink it I found it upset my tum. Since pd I seem to like a cup a day. I'm finding pd is changing so many things I like, do etc. All in small ways, but lots of little changes keep creeping in. I don't know if its just how it is for me or if anyone else finds the same.
Well I really would love to just go back to bed now & sleep, or at least lay on the sofa & do so, but feel guilty to. so I should go get sorted & start the afternoon off! Morning has been a right off!!!
Also noticed I have left my magnifying mirror down in Cornwall so I will be having to go out & buy another, that's another thing that has become worse since the pd, my eye sight! I wonder if its because of the type of pd my Nuero Consultant thinks I have. I really didn't realise there were types, I knew everyone can have different symptoms,etc, but I didn't know there was another type!
Well thank you again Joanne for letting me know its ok to post away or call if I need more support. Its been a draining time lately. & I stupidly still expect my phone to ring & it to be my brother. When your use to chatting twice or more a day you miss it so much! But I must get back into eating more regular & thinking positive again. For me to not eat regular is a slippery slope to go down!
Thank you & other friends on here you have been so kind & helped me the last few days cope with things. I only wish i'd come on & posted more the last couple of months whilst trying to cope with things. I know you all have your own issues & situations to deal with though, so I worry to burden with reading my post! & I always start off thinking "keep this short now, don't bore the pants off them all! But do I, NO! So sorry for that too"
Hoping your all well today & your week is going good, & you have some nice sunshine too. Its cloudy here in Sussex, I imagine its warm & humid out though. Yesterday was a lovely sunny day in Cornwall. Take care Joanne M & everyone. xx
Sorry for your loss.
Depending on what medication you are on, you need to make sure you eat the right stuff at the right time.
Parkie has a habit of making you very tired or as hubby calles it blooming exhausting. He is known to have 3 naps per day. No point of pushing it, just go with the flow or how your body demands it.
You take care and keep posting updates!
Hi Autumn Leaves, if you want to talk ring me, I lost my very much beloved Mum at age 49 so i cant say into know what your going through but I do have incite into you loss.
I have changed phones and no longer have your number.
BB xx
Hi, retired nanna
Hope your coping ok. Am counting down days for my app. for results now. The time just seems to have flown. It won't be long for your turn to count down the days too. Hope it all goes well for you
Porthos
Hi Autumnleaves
Feel free to message when you feel ready.
Porthos
Yes I am still around and soon it will be countdown to my appointment :) ...5 weeks!!
Autumn leaves sorry for your loss, grieving is a v natural emotion and therapeutic too, take care xx
Porthos and Autumnleaves I too live in Sussex, Hastings so maybe we all live nr each other? message me sometime
Hi Ian yes I am still v busy with gym, red wine, a CAP befriender( Christians Against Poverty) and volunteer work with our local Hospice and through excercise my ridigity in my left ankle is much better !!
POG have you started any meds yet?
Must go as a pile of ironing to tackle........have had it hidden away too long!!!!
Lynne xxx
Aye good for you nana
thats the way to do it mind and tell the doc you just have a small glass ,5 weeks will soon pass good luck with that . Well get the housework done instead of computers ha ha !! All the best na na
Ian xx
Hello everyone, I haven' t been on for a while again but thank you all for the support & post you have replied to me. I was unwell all last week & in bed most of the time. To be honest I wasn't sure what was going on I just felt ill top to toe!! I woke in the middle of the night with the most dreadful pressure like headache, & when I tried to sit up the bed felt like it was spinning around, even the picture on the wall seemed to be moving. I was burning up, felt nauseous & my heart was racing. I needed to spend a 1p & to be honest was scared to get up on my feet in case I lost balance & fell. It felt just like what happened to me last March when I ended up in hospital for 6days. It did seem to ease but next day I was bad. The gp came home & said I had a urine infection & put me on antis. They have made things much better, but whilst that was getting better a large back tooth which has been a right pain, decided that would join in!! Its a worry as its attached to a bridge too! I mustered up courage & went to the Dentist Tues, they examined & took X-rays & I've 3 more appointments to sit through! My teeth have really given me problems & ears & sinuses since having PD! I googled this Non Motor Symptoms, which I'd not heard of, & haven't heard anyone on here mention either but it's a form of PD apparently that my Nuero Con thinks!! at the moment anyway! that's the type of PD I have? As said googling it, it does say it can affect your teeth? I told my gp last week I can't remember the last time I felt so physically & emotionally down. Obviously the loss of my brother has affected me far more than I thought.
I hope time will be a big healer! I need to feel better, the last thing I want is to be indoors to long & my bad panic attacks close in on me! Thankfully the dentist is only about 10 houses up from me. Apart from that I've been pretty much indoors since my brothers funeral June 7th.
Well I'm sorry to go on so long & bore the pants off you all that's been kind enough to still be hanging in here reading it. I'm hoping all is well with you all. And friends that were waiting for appointments have had them now & they went well. I also hope everyone is feeling ok & coping, we all have our difficult days & good ones, I hope you have all had many good ones! Our weather isn't helping, we had awful storms here last night, other friends here in Sussex probably had it to. My bedroom was like a disco last night it was that lit up with lightening! Not that id have been up to any dancing though! lol. Just as well too, as I can't dance!
Well your wondering I'm sure when is this woman going to end, & I am now. So all keep as well as you can & many thanks to you who have listened & helped me the past few weeks. It's meant a lot & not made me feel so a lone. I will be in touch with you BB if you're reading this, & Lynn (nana) if you're reading it I'd love to pm you but I've forgotten how I do it, so any advice on that I'd be grateful. It's been a hard but more so lonely time lately. Take lots of care.
Best wishes to you all & PD. Com. Thank you! Autumn xxxxx
Hey autumn leaves
ive had plenty of tooth trouble ive lost 5 since ive been diagnosed and several fillings while i'm dreaming away at night i'm grinding teeth i guess, and dry mouth through stress/anxiety not too good either, and then there's collision as my jaw/tongue doesnt seem to know where it wants to be sometimes.
I have been given a stronger tooth paste to help protect my teeth, a couple of things have been suggested for the dreaming but i wasnt too keen on clonazepam, so maybe a gum shield ill suggest when i next see my dentist who'll be making me some dentures.
Hi there sea angler,
Yes I think teeth & eye sight can all be more symptoms connected with pd. I have noticed i've had problems with my teeth for about the last 5years, but just thought it was due to a badly fitted bridge I had made some 30years ago. I had noticed that a gap I had down the bottom right was slowly closing up so guessed that why I kept getting pain! Thought it must be the bridge & for some reason my gums or teeth must be shifting, as said this gap is much smaller, & some of my teeth that were alittle crowded seemed to be almost straightening themselves out! Its only now being dx with pd Christmas eve 2014 & then April being told that they think i've got this Non Motor Symtoms form of pd that i've googled it & I see teeth are mentioned. I have noticed for sure my worst symtoms are pain in my head, sinusus & ears teeth etc. which all affect my balance & make me so nausea & just unwell feeling. I try to exercise & go out but when your feeling so giddy & unsettle in the head its not easy. Also I notice I don't handle any stress anymore like I use to be able to.
We have to keep positive though & plod on don't we. Its good we all have each other on here to talk with, it helps hearing how others are dealing with things & gives you ideas of what to do to help your symptoms. I get very dry mouth too, my dentist prescribed a saliva spray which has been really useful.
Take care sea angler, I must go eat now, because I thought I had dentist today I hardly ate yesterday, then we had bad storms so I was up half the night then emptying buckets of water at 7am where my porch leaks. My strength is so weak in my right arm I dropped one of the buckets didn't I!!! So mopping up from 7.30am. All in all I think I had about 3hrs max sleep last night & very little to eat alday yesterday, so today my teeth, back & general body feel urghhhhhhhh! I need very much to work & get ideas or help about diet, that is something I know i'm bad with & i'm sure it will help my health if I eat better. I wouldn't mind but I got a call from Dentist at 9.15 canceling my appointment! Arrrrrh!!! I could have eaten better yesterday!.
Take care of yourself & thank you for your reply, I appreciated it & having a chat.
ps if you know any roof repairs in the Sussex area let me know. LOL. they forcast heavy rain & thunder again tonight! Bye for now. Autumn.
Good morning everyone,
I hope you are all feeling well & having a good day. I have had another sleepless night. I have felt so Woozy, & that's lying down! I get afraid to get up in case i'l lose balance! It seems ok for now i'm pleased to say.
Thank goodness it is too, as I have Dentist at 1.30pm for fillings, a clean, then a tooth prepared for a crow to be made. Needless to say I'm quite scared & totally dreading going alone! I found it interesting to read sea angler had had a lot of problems with teeth also. I'v certainly noticed it more since my dx. It's so hard to take in the different things & changes that this pd makes to your body & mind
Well wishing you all a better day then I fear mine is going to be. It's also 4 weeks today since my dear brothers funeral, how quickly the time goes! I am better then past weeks, just every now & then I will crumble again for no real reason. And if I try to talk about it to anyone that's really a bad idea as I definitely lose it. I'm sure each day & week that passe's it will hopfully ease. I haven't forgotten to pm but still trying to remember how to do it.
All have a good day & week & take care. From Autumn xx