Anybody there


#1

Hi since October I have thought that I was into the forum and felt miffed that I had not had any acknowledgements but hey ho lets hope that this works.  I may have an eureka moment and I have always wanted to have one of those. So if you dont know I am 68 years of age, married and have found life again now that I have got my head around Mr P.  I was diagnosed the 28th May 2014 which was a great shock to me because I had been told by the gp that I did not have Parkinsons although I thought I had.  I worked as a district nurse for over ten ;years and unfortunately only saw people in the later stages of the disease and my experience and pictures I held in my mind were not good. I started to get flash backs of those days. You know what they say a little knowledge can be a dangerous thing. But since then I have gained a greater understanding of the disease and the treatment available and life is better to the extent that I agree with Michel J Fox in that it has almost been a gift because I enjoy and live each day to the full and do .not dwell on the negativity. I think it is the only way to love the life we are given cos in the end we dont have a choice and we are not alone.  


#2

Hi, yes we are here and listiening. Are you from the future, as you say you were diagnosed on the 28th May 2014 :) I certainly do not see PD as a gift tho I am still very new to this disease and find it hard to truly accept my condition. Welcome to the forums there is a wealth of information and advice available, enjoy.

Cheers


#3

welcome a/n/f ,happy your here


#4

hi Ninja61

from the future mmm. I like that.  I didnot say or think it is easy to get your head around things. Its just what choice do we have so I just make it easy for my self and my loved ones. I dont think they have any idea of the mental and physical pains we go through. Its only us the ones who have it who do. My sons reply when I told him of my diagnosis was to say 'well I will help you I will tell you jokes and make you laugh. So I suppose there is a place for that too but his biggest asset is his ability to listen and thats great. But is it easy NO IT AINT. But delighted that you are around too and look forward to your musingss too


#5

Thank you. Love your dog and you must be ok too.


#6

hi astoriasis new flower......i have just left you a message on a different forum....welcome to you, I wish you all good wishes and look forward to hearing from you...keep smilingrazz it is on the still struggling forum!


#7

Hi, astoriasis --

Another welcome to the forum!  I also am a woman of 68 (or will be in three days), but I was diagnosed in 2002 and know I had symptoms at least four years prior to that.  So I've been living with PD for 16 years or more.  You are so right about keeping a positive outlook, and your son is right about laughter.  I am sure that exercise and optimism have helped me fight this disease.  My symptoms are still quite subtle and have not yet altered my way of living.  I take classes in Tai Chi, hike with friends, play the piano, and so forth just as I always have.

The worst turn of events for me came in 2012, when my husband and intended caregiver for my old age died of cancer.  So I am running a household alone now and doing well.  I don't know how many years I will continue to be self-sufficient, but I am following the same course you are:  living each day as fully as I can and trying to do everything I might be unable to do at a more advanced age.  Travel is high on my list for the next two years at least

Best wishes!

 


#8

Hi J I am a J too another something we have in common as well as age.  Good to hear from you and very sorry to hear about your loss.  It must have been devastating for you.  I dont know how I would have felt if it had been me.  My husband has not only endured and loved me for 45 years but had also been my best friend through thick and thin. I too have a variety of hobbies which include walking, patchwork, table tennis and painting and drawing and like you love travelling.  But my ambition is to write a book and feel that I must attempt that soon because Mr P is affectiing my hand movement but I think when I have really good days and can get stuck into it, I feel my art has improved and have actually submitted with my tongue in my cheek to the Mervyn Peake award.  Ah well, why not, its no good complaining if you are not in it. And you never know. And as for the book I am tossing up whether or not to write about my first seventeen years of life or of my nursing experiences.  Lots to think about.

Best wishes to you too


#9

astoriasis new flower --

Now I learn we have even more in common!  I have been writing poetry for years, have published some in poetry journals, and am now assembling my first book.  Of course, all retired English teachers write; I thought I'd try fiction first -- garbage. My fiction writing is best described as a cycle of write, reread, shred, write, reread, shred.  I have written some good essays on literary and other subjects, but nothing worth publishing.  If I'm granted a vote, I'd say choose the nursing experiences for your book; they would have a great general appeal.  However, I know nothing about your first 17 years, so I'm voting in ignorance.

I used to enjoy table tennis very much, but now I haven't played it in years.  I do not share your artistic talent and undertakings, though.  If I want a painting, I have to buy one.  There is no chance in the world that I could draw or paint anything worth hanging -- much less selling.

I hope you'll continue to contribute to the forum.  Best regards,    J 


#10

Hi J

Wrote to you last night but unfortunately at times I seem to have gremlins in my computer because just as I was coming to the end it disappeared into I know not where and switched itself off.  And then to add to the frustration when I managed to get back on it would not let me log in at the Parkinsons Home Page.  It is quite an old computer and am contemplating getting another one but am doing a bit of research on what to get. Thank you for your post, I enjoyed it.  You sound as if Mr P is progressing slowly for you which can only be good news.  I have been quite surprised by the level of services available in the area I reside.  I received an appointment initially quite quickly and have had supportive physio sessions and information re other services available should I require them. And I have been impressed by the level of help and support you can get from the society. I too love travelling and am interested on going on a cruise but as yet have not seen one that has taken my fancy. Last year we went to Norway and thoroughly enjoyed it. Very pretty and the Norwegians are lovely people. I tried Tai Chi once but the invisible ball had me tangled up and confused.  I was younger then and moved quickly. Perhaps I should try and find the ball or stick to the ping pong or whiff whaff as it is now called. Hoping you will stay around 

 

 

  


#11

There may indeed be some gremlins involved.  I had trouble getting to your post, kept getting a blank page.  But, then, last night I had no internet access at all, thanks to my cable company  Trying to make a simple adjustment to my TV service, they managed to knock out my phones and internet service!  I was on my cell phone an hour and 45 minutes this morning getting things back to normal.

Yes, in progression of this delightful disease, I have been extremely lucky.  Even my PD doctor marvels at my stability.  People tell me they either see no symptoms at all or see a slight tremor in my right hand.  After 16 -17 years, it really is amazing.  Mirapex is the drug that reversed my initial symptoms, but I think Azilect (rasagiline) must also be acting to slow them down, too.

Our winter weather is finally softening a bit.  I'm not sorry to be free of snow again.

J


#12

Hope your gremlins have gone altogether. Not admitting to having previously owning them and like sharing. confused

 

Am sure it has had a lot to do with the weather or perhaps it is this site. Sorry to hear about your problems with the experts and glad that you finally got sorted out.  Its a pain.  I too at the moment just have a shaky left hand and sometimes have cramp in fingers and feet but it is not bad just strange when it happens.  Sometimes my fingers go in a strange positions and on  one occasion it looked like a Spock Vulcan salute. but all in all I am not doing bad and it must be going on for two years since I first noticed the slight tremor. Mentally I find my recall is not as good but that may not related to Mr P.

Yes, I felt today that the weather was on the change and was out in the garden planting out lily bulbs so hopefully I will have a lovely array of colours.  I dont know about you but my plans never quite reach my expectations in the garden.  I usually end up with the stragglers or diseased ones which need TLC and then I get fond of them and wont get rid of them.  My only saving grace is the use of Chicken Poo which I get by the bucket full from the local suppliers.We have only once had a short downfall of snow which did not last long and quickly dried up.

Hope your daffs are in bloom. Our spring sunshine. 

astoriasis

 


#13

bring that  ray of sunshine quick had enough of this wet stuff ! i agree the garden never looks like i want it,my dad had green fingers mind you he spent a bomb of money every year.ive got a finger thats out of control at mo,find that my arthritis gloves work,ebay tenner .good luck with the bulbs


#14

Hi Astoriasis......Have left you a message on "Still Struggling"  We also love the spring bulbs and it has been such a lovely day today i really think the worst of the weather has gone!!! i do hope so.

Do you or Gus find that when the weather is warm and dry then the aches and pains are a little easier? as we are more relaxed maybe? Isn't it weird when suddenly the finger or fingers start to do there own thing? Glad the gloves help Gus...a good tenners worth by the sounds of it.lol

Keep smiling

 


#15

yes dollymaz. the sunshine does help,sorry to say the weathers bad again for us tomorrow dorset !


#16

Hi sent you a posting a few days ago and upon logging found out that it had not been sent, so my apologies for not getting back sooner. I did press the save key and it appeared to have winged its way to you. Your posting cheered me up considerably.  It was lovely to hear that your progression of Mr P is so slow.  Does it mean that you have got rid of the black dog or does it still lurk in the background.  I think this site is great for giving you a cross section of how things are and for letting you know that you are not alone. And no talk of floods in the media so thats great. Did you ever look into alternative medicine available for Mr P.  The nearest I got to getting much was from a Chinese doctor who said that they have a cure in China but you need a lion or a leopard.  I cant say I have seen many here in the UK and didnt know that they had lions in China or leopards. It just made me have a giggle to myself but who knows  perhaps we are missing a golden opportunity. MMMconfused  


#17

Hi Gus with the beautiful dog.  Just to tell you that I am a foster dog carer for my son of a Schitsu, Not sure of the spelling.  Who I have every four days. Hes three and a typical teenager, fun, demanding, affectionate and exceedingly loval. He is called Dexter, yes after the serial killer but dont worry her doesnt exhibit any of those tendencies except to say that he is the bravest dog or the most stupid, cos he doesnt know his size and is willing to take anyone on.  What a case. But I enjoy him and enjoy when I can have my time too


#18

J of Grey Cottage

this is the third posting I have sent you.  Goodness knows what happened to the other two. Gremlins again, I think but now I have invested in a new computer so I am keeping my fingers crossed for better luck.  Dont know how you get the bigger print perhaps you could let me into the secret.  I sometimes think that   computers are designed to test your patience or to drive you mad  . Its a Sunday today and I have spent the morning drawing the aurora borealis in my way and somehow I ended up with gremlins in it - they must be playing on my mind.  And to think I thought I was drawing bushes and grass. Ah well it is better that a bedroom or a swimming pool. Eat your hearts out David and Tracy.wink

hope all is well with you

          

 

 

 


#19

Hi J Bigger print for the forum postings you wanted? depends on your browser, but View > Zoom or something like it increases size.

best wishes

Semele


#20

try  ctrl +