Hi how are you today?

Hi dolly and all

not been on lately, had a good caravan week. You would love the sun! Caravan got too hot for me! Met sister in law, also friends from Norwich who had a caravan previously on our site

mum had a good sunny week, sat out in the sun. 

Hope mr dolly is soon sorted with neurologist etc. worrying re balance. Hubby peter has memory problems, dyslexic, no help when at school.

physio is still good and this week 2 swim walks with cousin carol. Very humid and sticky here . Being assessed soon for pip benefit , they cancelled appt this week, have to ring mon for new appt.

i have told the nurse I will try parkinsons patches in sept after the summer.

another fall oh dear! Back from caravan , stiff from 2 hour journey. Hubby Peter said stand by csr. Of course I tried to turn, fell against the wall. Have bruised my back this time, learnt my lesson! 

Cricket match sounds fun. I don't know the rules either!

yes Cromer is famous for crabs, not as many boats now.

enjoy the sunshine . I like the winter ha ha !

grandchildren coming sat, daddy brian doing a. Job for our neighbour . Always fun to play. School hols now, Isobel coming tues, Zach at a sports morning. Mummy get a bit of p and q ! 

love Brenda x 

Dear Brenda and All

So sorry to hear about your fall.  It just happens so quickly and before you know it Buuuuump.  My poor grandson got so upset when I fell - I just felt I had to look for something to prevent again - if possible.  The one thing that each fall had was that it occurred when I was in the process of turning.  I spoke to our physio in the area who went through with me the complex process of turning.  She made me look at my feet and do it slowly and made me realise and try to stop  forgetting to take a breather and just give a bit of thought of what I wanted my legs to do.  Does this help.  I hope so.

Pleased to hear that otherwise you were out in the glorious sun and enjoying the best summer I can remember in my life time.  It makes you feel good between falls.

Hope you are feeling better 

Warm regards

Astoriasis


HI Brenda and everyone..........I am so sorry to hear that you have hurt yourself...you really must stick to just the one glass !!!!eye rollseriously i hope you are soon on the mend, does shake you up though doesn't it? A friend of ours is working in Cromer she is an entertainer  and dancer and more used to being with the older generation, hence how we met on holidays. She now also entertains kiddies with Balloon making and sandcastles and then evenings spent calling Bingo and dancing. She likes the area very much although only there until Sept before moving on to Majorca. Oh to be young and fit again!!!! Pleased to hear your Mum enjoyed herself Brenda and haven't we had the best weather? i know a lot of people are not keen on the heat but i really love it, it makes me feel more energised if that makes sense? Today i have spent gardening and managed to get a small dead tree down and dug out the roots, also potted up 20 strawberry babies from original ones that we have been growing for 28 years! Mr D has been doing what he can bless him but every bit helps.....we have swopped roles recently since he became poorly, i find i am having to do more, i just hope the meds carry on working as well as they have been as they give me so much energy, but i have to stop cos of the aches and pains though the brain seems to want me to keep going (weird)!.He has been to the memory clinic, had more tests and should be getting his scan soon as our GP has requested an earlier appointment. Also now he has found he has Prostate problems....with not being able sometimes to hold his water. The doc took a blood test on the Tuesday of last week, we had the results on Saturday, Mr D had an examination on Monday which showed the Prostate is enlarged and blood results showed a high PSA so he referred him straight away to see a urologist, Tuesday we got a call from the Hospital and this friday he is seeing the Consultant......amazing service. I am hoping that it is not anything nasty as we both have enough going on at the moment.....but whatever it is we will cope.....not much choice really, though we do tend to see the funny side of things and think here we go again....bring it on.

I have an appointment to return to the Gastroenterologist next month though the tum has settled pretty well....until i had a delicious curry last night that was!!!!!! 

The eye specialist is trying to get the funding for me to have an op......won't hold my breath on that one but you never know.

So as you have gathered its like flippin Casualty in this house..............How are the wedding arrangements coming on Astoriasis? did you get your outfit sorted in the end and are you going for the black nails? be great if we could see the pics wouldn't it? I hope you all have a terrific day and look forward to hearing all about it.

well i'm off to bed.....hoping to go line dancing tomorrow.......and i will be very careful with the turns!!!!

Take care both of you....with my warmest wishes .Dolly xx

Hi astoriasis , dolly and all.

yes when I fall I am trying to turn, will ask the physio tomorrow, thanks. Not rush when turning.,! 

All healed up now, does Shake you up .

i hate the heat and humidity, so happy now it's cooler! I can't sweat enough so boil like a kettle ! 

had a few days at our caravan, go again early sept.

have osteoporosis drip in sept too. All medical appts! 

Going to try  parkinsons patches in sept too.

dolly, hope your hubby is soon sorted too. 

I am ok except when I have a crampy night, bad next day. Still get a few laughs too! 

Love brenda x x 

 

Hi folks. It's been a while since posting on the forum though I have been visiting on and off and have enjoyed reading about the antics of fellow champions.

I'm still trying to combat PD symptoms without meds and continue to find the 'spaced out' feeling really challenging. Anyway, enough of the moaning!

I'm interested to hear from PD folk out there who completed the London Marathon this year. I'd love to challenge myself to do it in 2015.

Love to hear from you.

Faith

Hi Faith and all

Things seem to have been a bit quiet of late.  I hope that everyone is doing alright and its just the time of the year when people are on holiday etc.  

Why did you come off the meds Faith.  I must have missed that.  Or is it another Spaced Out feeling for me too.

Competing in the London Marathon we from someone who started to late in life to become interested in sports, I can only wish and hope that I havent missed out too much. I think you must be on of the Yoooooung Ones.

Am meeting up with a couple of ladies that I met at the physiotherapy department who ran a course telling us of the services available locally and excercises to  keep ourselves in good shape.  They are very nice ladies and it is good to know that you are not the only person on this journey which has been given to us. Ha Ha how nice.

Thinking of you our future champion runner, ataa girl

Regards

Astoriasis

 

 

 

 

 

 

 

 

 

Hi astoriasis , faith, dolly and all.

I also had 10 weeks of physio, very good . Met nice people too.

faith , I am not on medication but am trying patches soon. Good luck with running ! I can't run , in fact now have a scooter to help, still walk.  And swim walk .

had to cancel osteo drip. Had a virus with catarrh, felt really sick. 

Had a few more days at caravan , scooter great on front and pier ! Soon be end of season. 

Weather is still warm here . I don't enjoy the summer but won't moan ha ha ! 

Enjoy reading all the posts .

brends xbig grin

Hi All...........lovely to read all your posts, sorry ive not been on here for a while but  things took a turn for the worst for my Hubby. As we had waited so very long for an appointment to see a Neurologist and his balance, walking and bladder incontinence and memory were getting worse, i was at my wits end , I seem to have been chasing the various departments non stop and far short of putting a tag around mr Ds neck saying please help me and leaving him at the hospital i didnt know what else to do.Finally the only answer left was to pay Privately to see a Neurologist even then i was told 2 weeks, i said it was not acceptable and i was offered the following morning!!!! 8am. Following that an MRI scan soon followed and that has shown an Acoustic Neuroma Brain Tumour, plus Hydrocephallus caused by the Tumour and now also Prostate Cancer. My strong, actiive fit man now can barely put one foot in front of the other without falling over. Yesterday we saw a marvellous man a Neuro surgeon who is top in his field and has done this op many times......he said that the Tumour has been there for approx 13 years and the first sign was when Mr D suddenly lost his hearing but we thought it had happpend due to him having an awful cold and we were on a flight home and he got a lot of pain when we were landing. It just shows you that we have no idea what is going on in our bodies. Anyway the upshot is they have also found a large cyst under the tumour and he will be having surgery asap....the Surgeon said that he would rearrange his schedule to fit my man in early next week on the NHS. We are so relieved though we know that it is major surgery and have been told the implications but without it  he was told he would not survive. He is hoping that once the growth has been removed that the fluid on the Brain will drain by itself if it doesn't then a further op will be performed by putting in a Shunt. I am so grateful to all the wonderful friends around us who are willing to ferry me back and forth if necessary. I may get a B & B near to the Hospital so i can be near to him. I realise that it is not all going to happen in 5 minutes but i hope that i will have my lovely man back and his main wish is to dance again ....bless him.

Take care of yourselves, sorry ive gone on a bit but it helps to chat .......i'll keep in touch

love Dolly xxx

ps Love the avatar Astoriasis xx

 

Hi Dolly

Just read your latest post not been on this thread before.  I do hope that all goes well with Mr D. 

Best wishes

wye

x

 

 

Hi everyone, Ezinda I have tried to upload my avitar but it tells me the picture is too big ie. 1.4MB and it will only accept up to 800 bytes, I am not computer literate can you advise me please how to make my picture smaller. I took it from my Iphone.

Hi Seanjoe

I don't have an iPhone so I don't know if that has a feature that lets you edit your photo. I think the easiest thing to do would be to send it to us at [email protected] and we can add it for you.

Let em know if you have any problems with this. 

Thanks,

Ezinda

Hi Wye...thank you for your message.....yes it has been a hectic time and finally last Friday we had a call to get Mr D into hospital straight away. it is 20 or so miles from us a Neurological Hospital in haywoods heath. He was booked for his op last Monday but it was cancelled at the last minute because an emergency came in, then tuesday it was cancelled again, finally it went ahead yesterday (Thursday). It took 7 hours and the large Tumour and adjoining Cyst have been removed. He is now in the High dependency unit and i saw him today, i doubt if he will remember as he was drifting in and out of consciousness. It was so good to see him and although we were told that he could possibly endure some facial paralysis and problems swallowing everything seemed to be ok. The consultant was happy with the way it had gone and i am so very grateful to him for his skill because without him i would have lost my man. It was that urgent. 

I hope all is well with you matey and i hope to get more time soon to get back on the forum and chat.

best wishes Dolly xxx

Hi Dolly

I am glad that at last things have actually been done for him, it sounds like a really scary time for you both and my thoughts are with you always.

best wishes

Wye xx

 

 

Dolly, I just returned from a trip to eastern Canada and read your posts.  I'm SO GLAD to hear that the operation was successful!  How fortunate that you took matters into your own hands and didn't wait for the NHS to act!  You saved your husband's life with that decision.

We'll all be thinking of you two and hoping everything is proceeding well.

J

Hi dolly

so pleased your hubby got his op, thanks to you.

pray all goes well for him and for you too. What a scary time!

i see pd nurse this week for assessment , maybe patches , though not keen.

laugh to cheer you up, today I was on my scooter, chasing grandchildren on their bikes , great fun , they loved it ! 

best wishes to all brenda xx

br

Hi Dolly

Have not been on the Foum for sometime.  How is your husband doing, last time i communicated with you he had just  had major surgery and was in high deopendency ward.  I hope all has gone well for him.

I had my eye op on the 23 Oct and all seems to be OK.

Best wishes to you and Mr Dolly

Luv Wye

x

 

 

 

 

 

 

 

hi dolly and all .

i haven't been on the forum for a while , I was thinking about your hubby.

i have had more falls , not serious , am waiting for osteoporosis injection.

due to stiffness , have had to give in, go on rotigine patches, very low dose for month, no side effects, no miracles yet , only few days ! Made me extra hungry , good thing as I need to put on weight !

physio again soon . Walking quite badly but do try. 

Love brenda  x 

A BIG HELLO TO YOU BRENDA AND WYE AND ALL......YES IT HAS BEEN A LONG TIME SINCE WE LAST CHATTED AND SO MUCH HAS HAPPENED. fIRSTLY THOUGH HOW ARE YOU BOTH? I HOPE YOUR EYE OP WAS A SUCCESS WYE,I KNOW YOU WERE DREADING IT AND YOU ARE A BRAVE LADY, NOT A GREAT EXPERIENCE AY?BUT WORTH IT I AM SURE. I WISH YOU ALL THE BEST IN YOUR RECOVERY. OH BRENDA YOU POOR LOVE, I HAVE WATCHED MR DOLLY FALL SO MANY TIMES THIS YEAR AND IT REALLY SHAKES YOU UP DOESN'T IT? I HOPE THE PHYSIO WILL HELP, YOU TRY SO HARD MATEY BUT YOU KEEP YOUR HUMOUR WHICH IS SO IMPORTANT. I BOUGHT MY MAN A ROLLATOR, REC BY THE NEURO PHYSIO AS HIS BALANCE HAS BEEN SO POOR AND KEPT FALLING BACKWARDS. IT HAS 4 WHEELS AND A SEAT, HE CAME HOME FROM HOSPITAL YESTERDAY AFTER YET ANOTHER BRAIN OP!! AND WE HAD A STROLL TODAY AND HE ENJOYED IT. 

YEP SINCE MY LAST POST SADLY HE GOT PROGRESSIVELY WORSE....IT SEEMED THE FIRST OP TO REMOVE THE TUMOUR WAS A SUCCESS BUT AS THE WEEKS WENT BY HE FELL MORE, BECAME VERY CONFUSED AND FORGETFUL, WEAK WITH BLADDER INCONTINENCE. FINALLY ONE EVE I FOUND HIM ON THE FLOOR HE HAD NO IDEA HOW HE GOT THERE AND I PRESSED HIS CARE ALARM BUTTON AND VERY SOON HE WAS BACK IN HOSPITAL. THE FLUID HAD BUILT UP IN THE BRAIN AGAIN AND HE HAD HYDROCEPHALUS QUITE BADLY, SO A SHUNT HAS NOW BEEN FITTED INTO THE BRAIN, DOWN THROUGH HIS NECK AND CHEST INTO HIS TUMMY WHERE THE FLUID IS DRAINED INTO THE BODY. hE HAS BEEN BACK IN HOSPITAL FOR 3 WEEKS AND IT IS SUCH AN AWKWARD PLACE TO REACH IF YOU DON'T HAVE A CAR. FRIENDS HAVE BEEN ANGELS AND WORKED OUT ROTAS TO TAKE IT IN TURNS TO GET ME UP THERE EVERY DAY, WHEN THE CHIPS ARE DOWN IT REALLY SHOWS YOU WHO ARE TRUE MATES...I WILL BE FOREVER GRATEFUL TO THEM ALL AND HAVE DECIDED ONCE MR D IS STRONGER WE WILL HAVE A PARTY FOR THEM AND THE THEME WILL BE MEDICAL (OF COURSE). iN FACT AS MR D HAS HAD 2 PRETTY LARGE INCISISIONS ON HIS HEAD  BOTH TIMES COVERED WITH WHAT LOOKED LIKE SANITARY TOWELS.....WE THOUGHT WHY NOT COME TO THE PARTY WEARING A PANTY LINER ON YOUR HEAD MAYBE PLAIN OR GLITTERED BUT YOU WONT GET IN WITHOUT ONE!!!!!!!! THEY ALL RECKON ITS AN ORIGINAL IDEA AND WILL DOIT FOR A LAUGH.

wHEN MR D WAS IN HOSPITAL HE GOT VERY LOW AND ONE NIGHT TRIED TO ESCAPE AND GET HOME TO ME 20 MILES AWAY, IN THE COLD, IN THE DARK AND IN HIS PYJAMAS. HE WAS WEARING A GREEN BAND WHICH INDICATED THAT HE WAS AT RISK OF FALLING AND SHOULD NEVER HAVE BEEN ALLOWED TO LEAVE THE WARD WITHOUT ASSISTENCE EVEN TO THE BATHROOM, BUT THE NURSE THOUGHT THAT WAS WHERE HE WAS HEADING AND SAID SHE WAS HAPPY FOR HIM TO GO UNAIDED!!!  IT WAS 20 MINS BEFORE THEY REALISED THAT HE HAD NOT RETURNED TO HIS BED!! BLESS HIM, SOMEHOW HE FOUND A SIDE DOOR UNLOCKED, NO CAMERAS AND HE MADE HIS WAY OUT OF THE HOSPITAL AND WAS FOUND EVENTUALLY BY AN OFF DUTY NURSE COLLAPSED BY THE MAIN ROAD AFTER HITTING HIS HEAD! IT IS THE STUFF NIGHTMARES ARE MADE OF, WHEN I GOT THE CALL I WAS FURIOUS AND HAD MANY QUESTIONS THAT NEEDED TO BE ANSWERED. THANKFULLY A CT SCAN SHOWED NO INTERNAL DAMAGE BUT WHAT COULD HAVE HAPPENED IF HE HAD NOT BEEN FOUND IS FRIGHTENING. HE SAID THAT HE JUST WANTED TO GET HOME TO ME. I HAVE A FULL INVESTIGATION GOING ON AT THE MOMENT AND HAVE GOT SEVERAL STATEMENTS,WHY WASNT HE CAUGHT ON CAMERA? WHY WAS HE ALLOWED TO LEAVE THE WARD UNATTENDED? THERE WAS A FULL STAFF ON YET NOBODY STOPPED HIM, WHY WAS THE SIDE DOOR NOT LOCKED AND NO CAMERA WORKING? IT COULD HAVE ENDED FAR WORSE THAN IT DID AND I DON'T WANT ANYONE TO GO THROUGH THIS, SO THAT IS WHY I WILL TAKE IT FURTHER.

hE IS HOME NOW THANK GOODNESS, HIS BALANCE HAS IMPROVED, HIS MEMORY AND CONFUSION HAVE IMPROVED CONSIDERABLY SINCE THE 2ND SURGERY AND THE INCONTINENCE UNDER CONTROL, I HAVE MY WONDERFUL MAN BACK, I AL SO PLEASED THAT HE HAS VERY LITTLE RECOLLECTION OF THE PAST FEW WEEKS.

nEXT STEP IS GETTING THE PROSTATE CANCER SORTED....WATCH THIS SPACE!!!

THEN TO CAP IT ALL MY VERY VERY OLD PUSS CAT DIED LAST NIGHT..............!!!!!!!!!!

MUST KEEEEEEEEEEEEEEEP SMILING GIRLS AY?????????????

I LOOK FORWARD TO HEARING HOW YOU ARE.........LOVE DOLLY XXXXX

Hells bells Dolly things have been rough. I don't know about smiling I'd be swearing and cursing. I have to agree after a recent incident...........you don't realise just how good your friends are till the chips are down.

Please pass on regards to Mr D.

Morph

Thanks Morph for your reply, and Mr D says many thanks he appreciates that. I took him for another walk today with his Rollator, he did very well though he fell asleep as soon as we returned home bless him. The nurse has been to change the dressing on his tum and he is looking forward to getting a shower again.....especially as i HELP him!!! nothings changed there then haha!! they say that is the last thing to die .....on a man. I missed my vocation, obviously i was meant to blanket bathwink.

How are you matey? i am sorry i have not been able to chat recently and really miss you all.

Hoping that you are keeping as well as you can.....will be in touch soon

love (Nurse) Dolly xx kiss