Im a newbee


#1

Good morning i am new to this forum and must admit ive refused to indulge in discussing our disease and for 15yrs have worked successfully at my profession. Six months ago i became unemployed and am finding it difficult getting employment, due i believe to my profession nationally knowing i have parkinsons. So with me also seeing signs of deteriation i have come round to learn as much as possible through chit chat and info. Hope to to discuss many relevant topics with many contributers as possible , so a big HELLO to everyone.


#2

Hi Lugmeister and welcome.....like you i have only just joined this forum and i am so glad i did as i have already had support and understanding that only fellow sufferers can give. I am sorry to hear you have become unemployed and having difficulty obtaining another job. I have been a hairdresser for 45 years and now just do family and friends but it has become more difficult as the hands don't move quite as quickly as they used to but i am hoping when the new meds kick in things will improve. I was diagnosed in feb 2013 though have had the PD for approx 5 years it seems. I like to dance and am continuing to do so ( not strictly come dancing standards by any means) !!big grinbut for fun...i find the cha cha challenging now as fast movement gets the old shakes going! and today the stiffness and neck spasms were a pain so i put on some good line dance music and went for it.....fab. Now im on a high and raring to go. So keep exercising, it does help with balance and co-ordination and a feeling of well being. Keep smiling and look forward to hearing from you. Best wishes


#3

Hi Lugmeister

I can understand about not wanting to discuss the disease. But it's not an "indulgence", it's about taking control of your own condition, putting you in charge. You'll feel better for it. Go on, go on, go on, go on.

And there are laws about not discriminating in employment . . .

Very best

Semele


#4

Hi Dollymaz

I am also new, waiting for official diagnosis but GP and I have seen all the symptoms, Dad and Gran had PD.So pleased to see exercise helps, have already found this. normally I am very active. Feet get very stiff and muscles in back and arm, I swim once a week, hope to soon go twice weekly. Also go for walks, with a stick , also helps.  Will soon be walking at our caravan.Have sent for and use 'Keep moving' book from PD.My Mum does not believe exercise helps, but sitting in one place too long, we stiffen up.

Forum is great, mainly so positive, and tips from other sufferers help a lot.

Keep our sense of humour too!

Best Wishes

Brenda


#5

I think Western is right, you must remain positive and keep your sense of humour.  3 years after diagnosis, I have not changed too much.  Initially I suffered many of the symptoms you read about.  They would last a few days and then disappear, as if to give me a taste of things to come.  Now my main complaint is exhaustion, but even that is improving so I maintain a positive attitude. 

I ain't afraid of no parkinson's!

About 5 months after diagnosis,  I started to find some humour in my condition and decided to start a blog ( you can find it at www.wpgchap.blogspot.ca) in which I detailed the good and the bad.  As I re-read some of my earliest entries, up to today's,  I can see the good times outnumber the bad and although the condition is no doubt continuing to progress, I concluded long ago that it is not as bad as I thought it would be.  Of course, I got it at an age when it is most likely to occur.  I probably would not be so cavalier if I had been diagnosed with early onset. 

But remaining positive, finding humour and exercising I believe, can slow the progression for everyone.

Don't let it beat you by letting it get you down.

Best wishes


#6

HI EVERYONE..arrow.I THINK YOU ARE ALL FANTASTIC...YOUR ATTITUDES TO THIS FLIPPIN DISEASE ARE A TRUE INSPIRATION TO ALL WHO PUT UP WITH IT. THERE ARE DAYS WHEN YOU FEEL PRETTY RUBBISH BUT GENERALLY THAT IS NOT THE CASE WITH STABLE MEDS, GOOD SUPPORT FROM FAMILY AND MATES, ENJOYING HOBBIES, HAVING A GOOD GIGGLE AND MOST OF ALL "KEEP MOVING" I WAS TOLD BY MY PD NURSE TO EXERCISE BUT  MAKE TIME TO RELAX IN BETWEEN AS YOU CAN BECOME TIRED MORE QUICKLY. SITTING AROUND IS A NO NO AS YOU WILL SEIZE UP BIG TIME AND WE ALL KNOW HOW PAINFUL STIFF MUSCLES CAN BE. EVEN EXERCISES FROM THE ARMCHAIR CAN BE BENEFICIAL IF IT IS NOT ONE OF YOUR BEST DAYS. iT ALL HELPS WITH BALANCE AND CO-ORDINATION AND A GENERAL FEELING OF WELL BEING. DO WHAT YOU CAN, WHEN YOU CAN....AND KEEEEEEEEEEEEEP SMILING!! big grin


#7

Blimey, Dollymaz, that's exhausting just to read! I try, I try . . .

S


#8

eekNO WONDER I FEEL SO KNACKERED TODAY!!!!eye roll


#9

I was diagnosed by a neurosurgeon last week and will be having a datscan later this month. I don't know if I was shocked or relieved when I was told. I was retired some 18 years ago after damaging my spine at work and all my symptoms since then were put down to the accident. Now I've got "the shakes" and a frozen shoulder as well it seems that I can put one name to all the problems. I have always had a positive attitude and that will never change and its been helpful reading the articles and peoples comments in the forum on this site.


#10

Hiya Smile razzand welcome.....great name by the way! its good that you have a positive attitude, that is so important even if sometimes its not so easy. Like you i had damage to my spine and 3 fractures to the pelvis also, after being hit by a taxi 23 years ago, i and the docs have always put all symptoms down to the "accident" the pain in the last 5 years across the shoulders, sacroilliac, frozen shoulder, neck stiffness and spasms, tightness in the right arm and hand etc. I do think there obviously is a weakness in these areas anyway and arthritis has set in the neck and lumber spine but i feel that the PD has targeted those weak spots...if that makes sense? and that would explain the extra pain. I love to dance but the cha cha shakes me up a bit!!! now, so i do what i can, when i can and enjoy it, also it all helps with balance and co-ordination so my physio and nurse have said. Keep your great attitude Smile,  you will always have someone on the forum that has experienced all or some of the various symptoms and it is so good to have the support of others....they are a lovely bunch! KEEP SMILING big grinand all good wishes to you


#11

I just love reading all your posts. Reading that you have the same symptoms that I get is really reassuring as I not only have to battle this disease but also some of my family who think I am making it all up and it can't possibly be Parkinsons, even tho its been confirmed by my neurologist at the hospital. I feel a fraud if I even mention the subject and if I told them I could dance like some of you say you can, then it would definitely be a no no. It seems for them to believe I have something then I have to lay down and die to prove it.!Sadly I can no longer dance and am very slow at walking. I do get good days in between and I think this is where they think Im ok.  But I do have a very good friend and a couple of my daughters who do support me and Im hoping to move house soon to move nearer to one of them and further away from the ones who dont believe. Then maybe I can accept it myself and not have to prove it to anyone all the time.

Its nice to meet you all on here. Good luck Lugmeister xx


#12

WELCOME GRANNY66...YES THE POSTS ARE VERY HELPFUL AREN'T THEY?  AND TO KNOW THAT WE ALL UNDERSTAND SOME OR ALL OF THE SYMPTOMS THAT EACH OF US CONTEND WITH. EVEN THOUGH EVERY JOURNEY IS DIFFERENT FOR EACH OF US WE HAVE PLENTY IN COMMON. THIS IS A GREAT FORUM, FRIENDLY, HELPFUL AND REASSURING, LIKE YOU SAID NOT EVERYBODY BELIEVES YOU HAVE ANYTHING WRONG UNLESS YOU LAY DOWN AND DIE........LOOKS DON'T ALWAYS PITY US AS IVE BEEN TOLD, AND THEY SAY BUT YOU LOOK SO WELL AND HOW DO YOU DO SO AND SO? THEY DON'T SEE US PERHAPS ON A NOT SO GOOD DAY, BUT OUR NEAREST AND DEAREST DO AND LIKE YOUR DEAR DAUGHTERS ARE THERE TO GIVE YOU SUPPORT AND UNDERSTANDING. MY HUSBAND WAS DISTRAUGHT WHEN HE HEARD MY DIAGNOSIS THOUGH I HAD A PRETTY GOOD IDEA AS SO MANY OF THE SYMPTOMS FITTED IN WITH PD. WE BOTH RETURNED FROM THE HOSPITAL, CRIED TOGETHER AND WENT TO A TEA DANCE. razzHE IS GREAT AND WHEN WE GO FOR WALKS I SIT A WHILE AND HE GOES FOR A GOOD WALK AND STEPS IT OUT, I MISS THAT BUT DO WHAT I CAN. PLUS THERE ARE LOTS OF OTHER THINGS TO ENJOY AND LOOK FORWARD TO. SOMETIMES HE SAYS YOU ARE BRAVE...BLESS HIM, ITS NOT BEING BRAVE IS IT? WE HAVE BEEN DISHED THIS OUT AND THERES NOT MUCH WE CAN DO ABOUT THAT SO ACCEPT IT AND MAKE THE MOST OF EVERYTHING.....AND MY MOTTO IS ...KEEP SMILING MATEYbig grin

ALL GOOD WISHES TO YOU AND KEEP POSTING ON THE FORUM


#13

So sorry for the late reply Dollymaz.  Ive had a job to find my way around this site and couldn't find this thread.

Im glad you have someone to share it all with. I get very lonely sometimes which doesn't help me at all. I get fed up with my own company and then get into a depression. Ive had a bad day today but have just had to give in and sit it out. Just wish there was a chat box thingy like on facebook where folk can come online and chat away about anything just to have the company and share things with other folk who understand.

Sorry. Im going now as Im going to depress everyone else if I carry this on.

Hope you all have a good weekend xx


#14

another message  seem to be getting the hang of this grany66


#15

Hi Granny 66....I am glad you have found your way around the forum and found us again but sad that you are feeling so low today. I don't know anything about Facebook but you can always post on this thread and someone will be here to answer you. It is good to share your feelings good or bad and everyone that has PD understands that we all have ups and downs.......please don't shut yourself away, let it all out we are listening honestly. keep posting and we will be here for you. What hobbies do you have? are you able to get out? tell us more about yourself (only if you want to)

Keep your chin up matey lolx