Abnormal


#1

Hi this is my first post on this site so bare with me please.

I am 41 years old and i have been diagnosed with pd for about 1 year now. I am still suffering quite a lot with this as i seem to have a different pd to the normal people. I have been tried on a number of different meds incl requip, sinemet and now stalevo all without great success.But my new meds do make me feel nausea all day, I have a tremor im very slow in getting around im unsteady and probably look like im drunk (if only that was the case). I dribble and my speech is not great. I have just finished an LSVT course which was good but hasnt improved my speech as much as i would of liked. I am married with three daughters under the age of 5. I dont work at the moment but luckily my wife does. Im told i should get some rest during the day which to be honest is impossible what with looking after the kids.

I also have cervical dystonia which basically means my head tilts to one side because my neck muscles go into spasm and it gets worse when im stressed or feel tense which is quite alot. I have had this for 3 1/2 years. These last couple of weeks ive had to stop driving because instead of looking out the front window my head seems to want to look out the left or if i was an owl even further around. This is usually improved by botox injections into the neck but for some reason its worn off earlier than normal. As you can imagine i am feeling pretty low at the moment and have just had enough of feeling like this. I know im not dying but i just want something to get better.


#2

Hi and welcome .....firstly you are certainly not abnormal.....and you have come to the right place to chat about how you feel as we all understand and are a friendly bunch who are there for each other. The support on this forum has been brilliant for me and you will find the same. I can understand that you feel so frustrated with the meds not helping...what does your PD nurse say? I can only speak from my own experience but when i have felt poorly through the Parky or meds i ring my nurse and if she isnt there then she rings back and gives me advice and it is so good just to chat to her. If you click on the pic of my cat Jess you can read  my intro to Mr Parky!!!idea I am sure you will hear from others on this forum who may be able to help you better than myself....but i will say...keep posting, it helps, and once they get you meds sorted you will feel much better than you do now....really.

Keep smilingbig grinand i wish you well

Dolly


#3

Hi Dolly thankyou so much for your reply.

Yes it is very frustrating with the meds, I have spoken to my pd nurse she is really lovely and has sugested to take paracetamol for pain on top of the tramadol.. So i'll have to hope this works. I guess i came on here just to sound off and get stuff off my chest, My Pd is an agressive one as it has changed and got worse in a very short time. I do try to keep smiling but i'm getting so fed up with these ailments and i cant see any light at the end of the tunnel i'm in constent pain and have three quite demanding kids who need me to be fit and healthy.

I do know that my neck will get better at some time and then i wont be so miserable.

 


#4

hi and welcome

 


#5

Hi and welcome,

I am no expert on pd I have only been diagnosed three months myself. My daughter got me to join the forum and it has helped me no end, just reading other peoples posts helps. Have you got a local parkinsons group near you, my wife and I go once a month and both benefit from it. If you have got one near by I suggest you give it a try. All the best and stay on the forum.       rams57


#6

Hi,

I am so sorry that you seem to be getting such  a raw deal, but I am sure you will feel much better as soon as they find out what medication suits you best.

Certainly you should follow Rams 57 ' s advice about contacting your local Parkinson's group, which may be able to give you some practical help.

It must be hard coping with 3 little girls under the age of 5 when you are feeling the way you do. Are there any friends or relatives who could come and give you a break during the day, so that you could try to rest?

I really do hope that they will sort out your medication, so that you can regain a semblance of normality. It will be good when at least your neck problem gets better.

Do take care and best wishes. Do keep in touch.


#7

Hello

      I  was diagosed with PD  in 99,and in he years, which seem like  seconds, since , then  my condition has worsened and I have of  tried every possible combination so my saviour was the Duodopa system, using a external pump to infuse dopamine directly to my small intestine, and it works very well its not a cure but it certainly helps, the benefits of this are many, when the pump is installed in the morning I am quickly into super charged mode and tend to try and get any important things carried out during that period , as the afternoon  arrives I am slowing up and need  to use the boost button which gets me through to bedtime, hopefully I will contiue to retain the benefits of this device until a cure is found ,if there is not  I will be up the creek.

                                                     Regards  Fedcoolits very sunny here in North Northumberland,,nice


#8

HI AND WELCOME IM 42 HAD PD FOR 8YRS ALSO MY PD WAS  AGGRESSIVE HAVE HAD DBS WHICH AS HELPED ALOT I WOULD SPEEK TO YOUR GP ABOUT THE PAIN,THERE ARE ALOT OF PAIN & NERVE PAIN MEDS OUT THERE GOOD LUCK