Advice please


#1
Hi all.
I am after some of your expert advice. I was diagnosed with PD 3 years ago. Been very well on meds pramipexole and azilect but recently all symptoms I had 3 years ago have come back only worse. I drag my leg it is hard to walk everything I do is an effort and my tremor has increased a lot.is this what happens after awhile is it a blip or do I need my meds changing. I keep thinking I might go back to how I was if I give it time but nothing is changing. Any advice would be appreciated

#2
Hi Wifit,

Parkinson's is a peculiar condition in that it is slightly different for everybody. At the same time it is a progressive, degenerative condition and so all the time yes, there is this interminable battle between the condition getting worse and us trying to keep as well as possible. The fact that your symptoms have returned after three years is not surprising. It could be that you need an increase in dosage of your current medication, or it might be that you need some additional or different medication. Do you see a neurologist? If not you could ask your GP for a referral. I think this is definitely the right way to go for you to have the best chance of getting the right mixture of medication to keep your symptoms under the best control for as long as possible.

I have had the condition for 19 years. I am 57 and take an awful lot of medication every day. I do have some problems with side effects and I don't like the fact that I have to take so much medication but it has meant that I was able to work until last year and even now I'm retired I keep busy and get about. Although I take a lot of drugs now they have been built up slowly over the years as I have needed extra support and symptoms have reappeared on worsened. I don't spend too much time thinking ahead but more consider how can I make sure that my quality of life now is as good as it can be.

I don't think it's worth putting up with the symptoms spoiling your life. Get your neurologist to prescribe you sufficient medication to give you control back and then you can get on with enjoying yourself.

Hope this helps. Let us know how you get on

Radar

#3
Hi radar,
Thank you for your reply it is very helpful. I see a neurologist but the one I have been under for the past 3 yrs. has moved to Australia. I have a new one now and he specialises in PD When I saw him in Nov. he was a little uncertain about my diagnosis in the first place so he wanted me to have another DAT scan to confirm the diagnosis. ( the first scan was negative ) I have had the scan and I am just waiting for the results. I have e mailed my Parkinson nurse and I am waiting for her to get back to me.
I am 58 but I had to give up my job as a nurse about 2 yrs ago as I could not manage . You have don't really well still working and taking your medication. Thanks once again I hope my results come back soon and maybe then I can move forward instead of backward at present

#4
Hi wifit

I read your post and reply from radar (sorry if I have got that wrong) with interest as I feel I am in a similar position. I have started to have a lot of stiffness in my legs, intermittent pain and light headedness....not looking good so far is it lol. I still work 18 hours a week over 3 days and even this is difficult at times I wonder if Im working 3 days and then getting over it for the next 4....silly really but when I feel good its not so bad but at the minute its just sh**. I will try and get in touch with my PD nurse tomorrow and see what he might suggest or at least try and get an appointment asap.Just feel a bit low at the minute was not well last week and think things are getting the better of me sorry to appear a bit of a winge. I do wonder if not working would resolve these problems but then when I was made redundant after 4 months I was so fed up went back to work 3 days a week because I thought that was what I needed now Im not so sure....if only I has an answer

#5
hi ya,im ali ive been dx 12 years im 43 ,im sorry your expercing these problems,but like the others have said unfortunally it part of the disease.the only thing i would do is return back to neuroigist and ask for different meds,or a dat scan if you not had one already,they may be able to tell from that.im not to sure.but good luck please keep us posted x:smile:

#6
Hi all I've been dx a year ago stage two pd.ive nearly all the non motor symptoms,dizzyness,constant cramp pains etc plus bells palsey.if I get a good day I'm still in pain.im on benealopda at the moment but I'm trying coconut oil at the moment to see if that has any effect on pd.one thing that does help is the hot tub.all the best.john

#7
Hi all
Thanks very much for your messages. I am going to see my GP tomorrow as my Consultant wants me to go on a low dose of Madopar. I am still having the symptoms I mentioned before but not quite as bad. My recent DAT scan in Dec2012 was positive to PD. I feel that I do not get enough sleep, ( at times I only might have 3 hrs. a night ) This contributed to some of my symptoms. On thing I would like to ask is has anyone heard that caffeine can improve symptoms PD. I have not had coffee since Xmas just boiled water and when I think back that's when my symptoms began to get worse. I read an article on caffeine and PD so I thought I would start and drink the odd cup of coffee a day. This is my third day of having 2 cups of coffee and I must say I feel a little better. My tremor is still bad but not as bad as it was 3 days ago. I don't no if I am clutching at straws or it really is helping. What does everyone think.

#8
HiWifit,

Some people find that coffee helps the medication kick in faster - likewise a fizzy drink. So this would affect the management of the disease, i.e. when best to take the pills in relation to the day etc. which is all important as that's all we can do with it at the moment.