Just joined the 'club'


#1

Hello everyone,

I was Diagnosed in June this year - a couple of days after my 49th birthday. After six months complaining to my GP about various problems and being told I was a hypochondriac (which I admit, I am!) I was given an appointment with neurologist who made the diagnosis straight away.

Didn't start meds straight away but have been on 1mg of Azilect for four weeks - which doesn't seem to have had much impact. Main physical issues are stiffness in left arm and wrist and dragging left foot plus some left-sided tremor.

Of course emotionally the whole thing has been a real kick in the nuts but I think I'm slowly coming to terms with it all (largely with the aid of our local off licence's excellent three-for-two Merlot offer!). 

Best wishes to all

Lloyd


#2

Welcome I was diagnosed sept . Started on requip xl slowly increasing by 2mg every 1-2weeks . Upto 10 mg .have L sided tremor with L leg limp /drag  and stiffness. Not noticed much difference so far , maybe slight , can get up from chair now but that's it. 

 

Think all treatment takes ages to kick in ,learning to be patient .im 56 and prob had it 4-6 years


#3

Thanks KIttens. It's all very frustrating isn't it? I'm sure it'll be helpful to learn from others' experiences so I'll keep an eye on this forum.

Best regards

 

Lloyd


#4

Welcome, Lloyd -- to a club you'd rather not belong to!

The beginning of your case of PD is similar to mine.  But when I was first diagnosed, Azilect was not yet on the market.  As soon as it was available, my doctor started me on it.  Like you, I saw no results in regard to symptoms.  But don't give it up unless side effects force you to, because its long-term purpose of slowing the progress of the disease is its major value (according to my doctors).  There is no way to tell if it is actually working for me or if I'm just phenomenally lucky, but I can tell you that I have now had PD at least 17 years and am still in the first stage.

I do have symptoms that I'm aware of every day, yet they are subtle enough that most people do not even notice them.  They are minimized by Mirapex (pramipexole), which worked for me within two weeks.  I have heard of cases in which results came even faster.  But, as you know, every case is different with this bizarre illness, so predictions are useless.  You and your doctor or PD nurse have to find the right combination for you.

If you exercise regularly, keep a positive attitude, and find effective medication, you're doing about everything you can.  Best wishes,

J


#5

Hi Lloyd and welcome to you.....as J says it is not a club that you would particualry want to belong to but we are a helpful lot and i have found so much support since joining. Like you and many others my symptoms were stiffness, shaking, lack of sense of smell, restless legs, shoulder pain etc etc. Finally after 4 years the diagnosis, and what a relief to finally give it a name. I take 10 mgs of requip XL at night (slow release) and 100/25 Madopar (co-Beneldopa) 3x a day. I have lots of energy, less stiffness and discomfort, restless legs dissappeared .....hurray!!  I am more than happy on my meds and as J says attitiude is also very important......keeping as active as possible, and def enjoy all you can and keep a positive outlook. Having good support from friends and family and certainly keep posting on this forum, we are all there for each other, never foorget that,.... we all understand. My Husband has just had a Brain tumour removed bless him and has Prostate cancer so i feel pretty lucky with my health to be honest. Keep posting, keep moving, and keeeeeeeeeeeeeep smiling yeah????????

love Dolly xx


#6

Thank you Dolly and J for your kind comments - much appreciated.

Dolly - I'm sorry to hear about your husband's problems and wish you both well.

Thanks again

Lloyd


#7

Welcome to the forum Lloyd

I was diagnosed last August at 47 yrs old  i had been going back and forth to my gp with various problems for about 4 or 5 yrs , a tremor in  my left hand which was put down to anaemia then stiffness and aching when getting out of bed and up from a chair that was put down to my thyroid problem and last year i went back with a more pronounced tremor and stiff and painful left shoulder and a feeling like i was shaking inside my body i was sent to a neurologist who  diagnosed Parkinsons straight away ,  3 weeks later my mum was diagnosed with parkinsons also . i was started on Azilect straight away but found they did not do much for me  but i do believe they can take about 6 weeks or so to feel the full benefit but i now take Levodopa (Madopar ) which i find keeps my symptoms more or less well controlled

Three for two on Merlot  i am more of a Malibu person myself blush


#8

Thanks for the feedback Shelly. I'll try Malibu as part of my self medication process too as it sounds like its working for you!

 

Kindest regards

LLoyd


#9

Always works for me , not that i drink much , just the occassional tipple blush


#10

Hi Lloyd

Never under estimate azilect i have watched utube presentations on its effects I dont know how to post links on here for you to see it but I think Shelly does as I sent her the link its quite mind opening when you see how good it is I was diagnosed in November 13 at aged 49 and I started off on azilect but now have madopar as well and anything that can slow down pd has got to be a good thing take care...................Paul

 


#11

Hi all new on hear I was diagnosed last month after a year of tests not there fault they weren't sure if  was pd or essential tremor finally had a dat scan only took two weeks for the answer and was told I had pd started meds straight away I'm on pramapexal hope I said that right  been on them three weeks and there really helping. I'm still getting used to having pd and find myself getting scared but I'm trying not to let it beat me thanks for listening to me. Xx


#12

Welcome to the forum livergirl

I was diagnosed last year with pd i had a bit of a hard time coming to terms with it and accepting things but i got there in the end , i resaerched as much has i could about pd and ordered some very informative literature from parkinsons uk which i found helped me  and also helped explain to my children about the diagnosis


#13

Hi shelly thanks for the welcome it's nice to hear from someone who also found it hard to come to terms with it but it's nice to see you got there in the end help for me then.  Thanks for letting me know about the literature don't know much about pd so that will be a great help  x


#14

The livergirl --

Hi and welcome!  I think all of us find it hard to accept the PD diagnosis at first.  It's devastating to be told that you have a progressive and at present incurable disease!  But it sounds to me as if you have the right attitude already.  Keep moving (as in lots of exercise) and keep moving forward (think positive thoughts).  You're already taking a good medication for controlling symptoms, so I think you'll do well:  exercise, attitude, and medication that works.

I have had PD at least 17 years now, and I'm still in the first stage.  Pramipexole was the drug I started on.  When Azilect (rasagiline) came on the market, my doctor added it in order to slow the development of the disease.  Good luck with your case.  I hope it moves as slowly as mine has!

Best wishes,   J


#15

Hi  j thanks for your welcome and kind words I'm trying to be strong I keep saying to myself that I will not let it beat me  easier said than done sometimes. I'm glad you said my meds were good as I don't know the first thing about any meds so just put my trust  in my consultant but almost straight away my tremors stopped and my body felt still been a few years since I felt like this.it was really great to hear that after 17 years your still in the first stage im glad your doing well and it's moving slowly hope mine does to  good luck to you to it was nice to hear from you x