Bewildered


#1

I'm a 65 year old female andI went to see a neurologist because of a slight hand tremor and some difficulties with hand writing.   He sent me for a scan which revealed 50% loss of brain ganglion activity but said I didn't have parkinsons ("not yet" I'm thinking).   He prescribed 1 Madopar (125 Levodopum + Benserazidum) each day for a month then I  go back to see him.    What do other members think of such early treatment?    Do they wish they had/think such early treatment is a good thing?


#2

Hi newtoyou

When I was diagnosed in 2011 I put off taking meds till 2012, they were the worst 12 months I had ever had. Once I was started on meds the change in my way of life was phenominal, really wished I had taken them earlier! I had started to really slow down, and I mean really, but with meds I have been a lot better. So yes they  did help in my case.

 

Regards Sheffy


#3

Hi and welcome  i was diagnosed in September and put on meds straight away for me it was the best thing it has stopped my tremors and I feel a lot better in myself so for me it worked .      Regards thelivergirl                                                  


#4

I was diagnosed at age 65 in early 2011 and chose to take the agonist mirapex (mirapexin) and amantadine right away.  No side effects, except that they almost immediately stopped my tremor.  I still suffered a loss of smell, speech difficulties and illegible handwriting but all the other symptoms disappeard (tremors, excessive saliva, swallowing problems, etc).  Recently my neuro added L-dopa to the cocktail and, voila, my speech returned; people could hear me again and, joy of joys, my handwriting reappeared.  I could now communicate without using a computer.

My sense of smell has not made a reappearnce but I consider that a benefit.   I no longer wish I had a hazmat suit when my daughter changes her baby's diapers. 

Take the meds and lead an almost normal life.


#5

Hi and welcome 

I was dx in June this year and given requip xl in July and the results were amazing am now back to work full time and living pretty much a normal life even riding a motorbike again witch I never thought I'd do

taking the meds was the best thing I could have done 

Live well Cc


#6

That's great to hear Cheshire Cat . Really pleased for you . 


#7

hello newtoyou. Gimmie the drugs! There's no piont in waiting for jam tomorrow when you can have it today, and probably tomorrow as well. If I hadn't gone on meds I'd be a write-off by now. Instead I'm an active productive ecoomic unit (well, I work anyway).

Best wishes, take care, enjoy

Semele


#8

Interested to hear what people think about starting on sinemet early ... Neuro said they don't like to give to young onset , but another neuro had opposite opinion ..... 


#9

cool

  Good Morning Newtoyou,

                     Would you mind if I called you Newt,a dear friend of mine passed away   3wks since, he was a heavy smoker and had left his really lovely wife, for a younger Lady, they had only been together about a month I am sorry Newt, I do go walkabout occasionally when I am poting or posting even,but just to clear up any confusion, my buddys new Lady is a really beautiful person also, and her name is NEWTON, or Newt as we have named her,, she was crushed when JACK,, not his real name , died and the most amazing situation has come about, Jacks wife,(they were'nt planning to divorce) responded to Newts devastation, especially when she found out that  Newt is having Jacks Baby,in fact she treats Newt like a daughter and Newt calls her MUM, Newt has moved into the magnificent NORTUMBERLAND FARMHOUSE and they are so happy, if I say to you all my friends, ANNE, not her real name! Jacks Lady,lost her onlychild to cancer 11yrs since she was the most incredibly beautiful talented child, and I still weep occasionally when i think of her and Newt is about the age Rose, not her real name,, would be if she was still with us, now isnt that a truly lovely warm compassionate,account of  devastating loss bringing two lovely people together, thats what I CALL A HAPPY CHRISTMAS,,         I have been trying to find a way to express my joy that these two broken hearts, have found each other ANNE  told me only yesterday, she loves Newt and cant wait for the new arival, due mid may, so a spring baby,  I am sorry for rambling on,Newtoyou, and apple orgies,(I used to raid,LOCAL ORCHARDS  with JACK ANDY AND CALEB I   mean apologies for hi'jacking your alias, but to answer your enquiry, your GP was correct in  starting you  on  ANTI  PARKY DRUGS, the sooner the Better, it can only be to your advantage to steal a jump on BLACKHEART (my description of the beast eroding myBrain cells) if the losses continue  at the rate they are now  there  wont be much lefthen the Neurosurgeons Neurologists and   Apprentice Brain Surgeons mates, start slicing and dicing old FEDEXs supercomputer ( BRAIN,?? I HAVE DONATED IT TO THE NATIONAL BRAINBANK )

                                OH I AM OF THE LARGE JOY ANDBOX OF HAPPY AT YOUR INCLUSION

                                       IN  THIS EXCELLENTIVE SUPERLATIVE FORUM not including when my posts go walkies                         KINDEST rEGARDSRrrrr, sorry that groling or if you prefer growling, is my little LENOVO I have been on line since about 6.30 and she's tired out so I will wander down to see MOBI as it was  very cold in NORTHUMBERLAD last night and his battery might need topping uup or up,,BYE NEWT

 

 

 

 

 

 

 

 and


#10

Hi I have found reading the above comments really encouraging. I was diagnosed with PD on Xmas eve, so i'm really new to it all. I haven't been well on/off for 3or so years, & it was only when I stumbled in my gps surgery earlier this year I was referred to see a Neuro Consultant. I am waiting to have a scan done still, (should be in the next few weeks) But mean while my Consultant seemed pretty sure I have PD. He has started me straight away on Madapar 50mg for the first week, then 2 50mg tablets for the 2nd week. (Which i'm in the middle of now) Next week 3 50mg tablets. Is this one of the common tablets, as I don't seem to hear many others say their on it??

My symptons are not so bad I have just noticed weakness on my right side. As I had 5 tears in my shoulder repaired 3yrs ago, then a nasty mole removed the following year on the same side, I was putting the weakness down to that. But other things started to gradually happen, my hand writing, my balance when  walking was just slightly off. I was struggling when trying to pick things up & I just didn't have the energy I normally would have. All this said, I still was pretty taken back though when he said it was PD. The last 2wks have felt really unsettling for me if honest, I have felt all sorts of emotions & worries. So reading your post has helped me to feel confident that PD doesn't mean a lot of changes.

Since upping my doseage though I have noticed my swallowing is more difficult, & about an hour after taking the tablet I feel pretty rough. I'm hoping this will wear off once I have become use to them. I am hoping its a good PD form of treatment!!!

I must be a bit dittsy though, as i'm really glad to have found all your post & join in, since joining myself the other day i'm finding posting anything or talking with anyone so hard. I seem to find it ok to reply to post, but unsure how you actually make a posting of you own?? Probably me being ditsy, I will get the hang of it all, just as i'm going to have to get the hang of the PD & medication!!

 

Wishing you all good luck for 2015

Autumn leaves.


#11

 And good luck to you..Autumn leaves

                          My wife has simlar symptoms as you but her neuro put her on sinemet plus, everyone is different and the consultants try different drugs. It seems like i and other people have said on the forum,everyone is different and its a little bit trial and error. I hope everything works out for you

                           Billywhizz


#12

Hi everyone over the last couple of months I have found a great deal of useful information and support on the forum. 

I don't have Parkinsons but my husband is waiting for a diagnosis. About eighteen months ago he had a painful shoulder and was referred to our local hospital for physio. I noticed a resting and postural tremor in his right hand and I suggested that he speak to his consultant , which he did and at the time they said I was an internet freak! 

We went on holiday in October and during the break I really noticed the tremor, particularly when he was walking. My husband then became quite depressed and I went with him to the GP who said it was probably essential tremor as he was a bit young to have Parkinsons, he is 43. He agreed to refer him to neuro and we got an appointment for 4 months later! At this point my husband was really concerned and we went back in and said that we wanted to pay for a private appointment. We saw the neuro privately and he has referred us back to the Nhs for Datscan as he says that he isn't completely convinced it is Parkinsons as the tremor is irregular. I am afraid that I need to be convinced otherwise as my husband has reduced arm swing and has suffered from painful and stiff neck and shoulder for over 3 years. 

My husband is very anxious about the situation as he is a hgv driver and the implications of Parkinsons at such a relatively young age are obviously very worrying emotionally, health wise and financially. 

I wish that he would read the forum posts, I realise how frightening it must be for him but I feel that knowledge is everything and I am sure he would see that it is not the end of the world and that there are more forbodding conditions. I was terrified when I first accessed the site but the support and information that you share is priceless and has helped me change my attitude towards Parkinsons. 

We are waiting for the date for the Datscan and I will post the results but meanwhile thanks for helping us to deal with what has been a very challenging few months. You really are an inspiring group of people.

klou

 

 

 

 

 

 

 

 

 

 

 

 

 


#13

cool

           Hello Autmnleaves

                                Just sit in your favourite chair with a pen and note pad, make a list of anything at all, about your life with parky,  you can express anger and rage at this pig we must live with, or sadness at the precious things you have lost,your thoughts  for your future the predjudice,you encounter, how are your family dealing with your illness,after you  have completed your list pick out  5 items you think willboth be good  to  get off your chest, and informative to your new buddies,  thhen pick 2 of the  best and post them you will quickly lose any inhibitions , and if you enjoy humour andda good laugh, send  it as these days we certainly need a laugh, I hope you dont think I am being condescending, as its a system I use all the time otherwise I would never remember what I need  to post ,I have the memory of a goldfish  so if I dont note it I cant pote it,,yes I know it should be post it but thats something a number of good people enjoy on  our Forum. being  silly  or even very ry very silly.  So wellcome  Autumnleaves, and fill yer boots, as they say

                        Have a great year             FED

 

 

 

 


#14

 

 

Hello klou, I have just read your post, and would like to reply as your husband is in the same terrifying situation I was in in 99,but as I am losing mobility rapidly I would not give the information you deserve, so  I will pick up this post tommorow,

                     BFN                     FED


#15

Hello  fedexlike,

Thank you for your post, I very much appreciate your comments. I hope to see you on here again to chat with, or have a  moan, & laugh too I hope! Its all early days this for me, but I believe one of the important things with this PD is to be able to keep a good outlook, try to be positive, & importantly find things to smile or laugh about, as there always is somewhere!! Even on a bad day, I try to find something! 

If I don't ever appear to be replying please don't think its because I can't be bothered or i'm just not on line, as I check the site most days. But daft me for some odd reason I am having real problems finding past post i've commented on, or people's replies to me!!

I am not very technically minded, so can't say I find my way around a computer that easily at the best of times, but I normally pick things up quickly (or have done in the past!!) The last year obviously my health hasn't been great & i've noticed just mild changes, now being diagnosed with this PD I now know what has been causing the changes.

I use to along while ago work as a PA, before computers came into play, so i'm self taught on line, but this site I do seem to be having problems finding things etc. I am sure no doubt I will get the hang of it. I have a good soh, or so i'm told by my fb friends & others so it will be lovely to get to know some of you.

You take care fedexlike & hope to find or see you again on here!! I seem to have to go through endless things before I come across post though!!


#16

 

    Hello Autmnleaves

                      If you cant find a post you wish to read up on or contact the poasta,?? if  you just scroll up to the little SEARCH box and type your requirements , click search, a list of info  will appear and also your answer,do keep in touch this Forum is a good place if you have worries or anguish , its always good to feel the kindness  that lives here.

                              Kindest Regards  FED


#17

Hello Autumnleaves

When I log in I`m taken to a new page that says HATKNITTER at the top.  Down at the bottom of the page are several boxes which are the posts I`ve replied to.  I just click on the one I want to look at next.  I don`t need to scroll down to the boxes but perhaps you need to.

Best wishes

Hatknitter


#18

Hi FedEx I guess you were a trucker to? Yes it's devastating isn't it, people don't understand that to lose your hgv is devastating. My uncle was also continental long distance driver and following an accident where he broke his back he developed spondylitis and lost his hgv at 47. The only redeeming thing about my husbands situation in that he is a refuse driver for the local authority and his human resources manager has suggested they will relocate him because of the dda regulations but he us desperately upset about his situation. He's keeping a brave face, says he doesn't mind going litter picking! 

 

Klou

 


#19

       Hello klou, I dont know how you recieved my post as first it separated , half at the top and half at the bottom and when I tried to glue them back together it did its usual party piece and vapourised, so if you think it seemed unfinished thats because it wasnt, crazy , first they were vanishing, and now they cant wait to reach  their destination, so where was I, oh yes, I worked in the heavy plant world and loved my  job and was licenced to operate various machines and trucks, I resigned in 99 ,a bad year for me, I have adopted a very stubborn attitude to PD,, Its a bit like living in a permanent head on train crash, I wont give and parky wont back off  it can be a bit tiresome at times but it must be the same for parky as its part of me, sounds nuts does'nt it but thats the way I deal with it, the balance shifts constantly and I often take a beating,but I always get back up and I press the Turbo Supercharger button on Ddopa,and the beast flees in terror, it sounds a bit science fiction  it is in fact a method , one of many employed , to generate enough willpower  to get through the day, its taken me years to reach this strange level of mutual attrition,and I will probably be around for a while yet Im 64 going on 94 (at times), and every day I come up with new ways of helping  myself , making it easier to get dressed and shaved ,its almost like two entities, one takes away the person I used  to be while the other rebuilds the person I  am now, I dont  know if that makes sense,

           Im off now so may I wish you  both well this New Year, FED

 

 

 


#20

A late welcome from me, autumnleaves and klou!

Autumnleaves, one more word on finding posts:  when you log in, click on "My account" rather than "Forum" and you won't have to sort through a hundred threads, only those you've answered before.

I'm glad you both find the forum helpful.  Many of us who have had PD a long time (18 years in my case) still learn from others' experience here.  And it is always encouraging to find you are not alone in what you feel and undergo in regard to this annoying disease.  Whether you are the pwp or the caregiver, you are under stress, particularly immediately after the diagnosis, and need support in some form.  This forum is private and anonymous, yet provides personal care and group support!

My best wishes,

J