I don't like this disease


#1

Hi I'm new to blogging and also new to Parkinsons

  I have been dx about a month now. I am a 49 year old male. My wife took me to the GP saying I was becoming slow and a little unsteady. GP said looks like early onset Parkinsons (BOOM P BOMB) left surgery with an appointment for neurologist.  Don't need to wait I have BUPA through work, within a week appointment to see neurologist comes through. Evening appointment I can see her watching me walk to the room she can see my right arm not swinging and my leg not striding things that I have but down like so many people on here to a trapped nerve or bad back but deep down you know it's something else. Especially when you have seen the chiropractor  half a dozen times and it's still not right. 

Anyway 20 minutes later she says I think your GP is right (BOOM P BOMB) I'll make an appointment for a Datt scan and a MRI scan just to be sure but she thought I should start medication straight away.  

See local GP and begin build up of Ropinerol

Datt scan confirmed Parkinsons (BOOM P BOMB) 

Now a month has gone by and I am on 4mg of Spiroco xl per day. I would say that my arm and leg are moving a bit better but here's the catch. I sleep really badly jerking shouting swearing. I have terrible bouts of sweating and nausea. I can hardly stay awake some days. 

I have a very physical and stressful demanding job (who doesn't ) and am finding it hard to cope both physically and mentally. Does anyone out there now how long it takes for the meds to settle down. 

Yesterday I was virtually on the point of giving up the meds I can cope with a gammy arm and leg but I am really struggling with all the side effects. 

As I posted I don't like this disease but I know it's not going to go away but how long is it before things settle down any info would be gratefully received.  

MBG. 


#2

 

Hi

the sleep disturbance sounds like rem/vivid dreaming it can be a common feature(and fatigue) i suffer from it as well as do others on the forum but im afraid im not qualified to tell you what to do other than contact your consultant/ pd nurse/gp or the helpline has qualified people at hand, it can take time to sort out and settle down your meds so they are just right for you personally , timeing of is just as important as the dose.


#3

Hi MBG,

Your experience of Ropinirole is not uncommon.......it doesn't suit everybody. I had bad side effects from this drug and gradually came off it. However you are still on a very low dose (4mg). I was on 12mg. and others I know reach 22mg. per day. Also I found that SpirocoXL did not work as well for me as RequipXL. I regularly was wide awake at. 4.30am. and would get up and potter about. I am retired, so it didn't bother me so much, but you have a physical and stressful job, so need a good night's sleep.

My advice would be to go back to your neurologist or PD nurse and explain your side effects and either increase your meds..........but insist on RequipXL, or ask for a different drug altogether. I am now taking Madopar, which is a Levadopa drug and I must say the difference is incredible. I sleep well, my back, leg, and shoulder pain has gone and I feel almost 'normal' again!

It's all a matter of trial and error with this condition and I hope you find a drug that suits you soon. Don't suffer in silence.......insist that something be done. Good luck.

Twinks.

PS. Another important fact is that you need to take meds, at least half an hour before food, or an hour after food, for them to work properly. We're not always told this!


#4

Thanks for the replies Sea Angler and Twinks

is there anyone out there who is employed in a physically demanding job (farming, building,etc) I would be interested to know how you cope with the workload. 


#5

Hi

My hubby was diagnosed at 43, he is now 45. He is employed in a manual job which is physically demanding. I think that every individual with parkinsons copes differently with physical demands depending on their particular symptoms. My OH suffers with extreme sweating and fatigue, and he struggles with fine motor skills and cramp, particularly in the morning. He has been helped no end by the drug regime that his nuero and nurse have prescribed but to be honest he is really struggling with work demands and has been off sick for a couple of months, his occupational health nurse has suggested that his employer consider reposting him, they have suggested that if he us unfit to do his job then he has twelve weeks to apply for another post or they may dismiss him on ill health grounds! I thought that that they might have offered retraining and worked with him to offer an alternative post as I honestly think he would not stand much chance in competitive interviews for an administrative post ! Anyway we are working on that one. It is very worrying when you have a good many years of working life ahead but to be honest we think that we need to take one day at a time and not become too stressed as this is proven to make the symptoms worse.

klou

 

 


#6

hi klou

               i was 36 when i got dx my job was a plumber by trade ,then a building foreman my pd was ok controlled for a couple yrs then i started to get worse very quickly ,so decided to change job to hotel maintenance man my pd was very aggressive so i went and had dbs to try and keep working ,the dbs worked really well ,but every time i went to work i would make myself ill tremors sickness stress weak so i would go back to hospital get re tuned go back to work the same would happen  ! tried 8 times then they said it was time i finished work it came very hard depressed no one to talk too wife at work then i snapped out of it for my dogs sake not getting walked ,then i went to fitness centre sauna steam room bob in water meet lots of new friends i am now 45yrs think this is the best ive ever felt ,stress is the biggest problem with pd & stay fit.The hardest part was getting money out of dwp but my pdsw helped fill all forms in & told me what benefits i could claim.


#7

Hi Gus

 I couldn't agree more, it's like a trial for my hubby to get up and go to work. First thing in the morning it is murder and I really feel for him, by Lunch he's much better and if he hasn't got pressures that accompany work he can be quite well, when he doesn't work he can exercise and this helps but if he has done a day at work he is completely exhausted and can't exercise which again compounds the illness. The stress of even going in to appointments at work sends his tremor off the scale and makes his symptoms worse. I think he is accepting the inevitable although sometimes I feel annoyed because people comment that there doesn't look much wrong with him but they don't see him at 6am in the morning while he is waiting for meds to kick in. Thanks for your advice we will ask the Parkinsons nurse for details of the support worker. 


#8

Hi Gus 

I was thinking of what happens in the future a few days ago. I had a real bad day but then thought if things improve I can cope with this. I suppose it will take a lot of trial and error to get the meds right. 

Everyone says stress is a real contributing factor to PD symptoms so what do you do when you have recently been dx with PD which must stress you out. 

I have a meeting with my neurologist in a months time hopefully things will be better by then. 


#9

hi mbgg

                  this not going to sound good but i hit the bottle,working away alot of the time when i was dx ,so i just sort of treated like a common cold.one of the worst things i done.wish i came on this forum first took many yrs. 


#10

hi klou

                       if you go to top of page where it says support for you click on that & go on support worker enter postcode and it will give you details of pd worker.all the best


#11
Klou is right our symptoms differ widely due to our own unique dna what one person can manage with PD will not necessarily be the same for another. You have to monitor yourself and manage as best as you can my advice as a pwp is do not over do it it will cause you stress and that's the worst thing for us. I for one am now unfit for work and yet there's times when you look at me and would say there nothing wrong but my Meds are at the moment working the best they can. The Entacapone on top of the Madopar is for me brill but my need has gone up up and up so what the future holds I am not sure. Hopefully the DBS will do what i need it to. BB. xx

#12

 

having PD is a bit like a weather forecast, It changes, the mornin might be frosty with rain  setting in  there might be a chance of some sun after lunch later on a front will come in an overnight they'll be Gales.