Moggie40minor


#1

I was hit by the bomb shell that I had PD on 19 dec 2013 .

if I am honest I knew for several months before having done research after gp muttered PD under her breath and referred me to neuro.

my husband seems not to understand I have a huge amount of pain in my legs and hips his comment to everything is buck up and get on with it,has anyone else had this problem?

i have Been given madopar 12.5 mg/50mg  twice a day increasing to three times a day after three weeks, could it be these that are making me feel so wiped out?

 


#2

 

Hello moggie40minor

I get stiffness, cramps, slowness and pain in my hips from time to time, luckily I have a very supportive husband and at times you do need support. Because at times you feel depressed and you need someone there. I am on 4mg Ropinirol XL slow release which I started taking August 2013, made a big difference but with PD you still have good days and bad days.

 

Good luck with your progress!

 

Regards Sheila

 


#3

Hello Moggie40minor

 

Did your husband go with you to see the neuro? If not, I think you have to get him involved a bit so that his understanding increases. I'm sorry I'm expressing this badly, it may be that he is scared witless, but you need better support than you are getting. It's very early days for both of you, is there a PD nurse in your area? Have you made contact with a local support group?

best wishes to you both and keep posting


#4

Thanks Mosie,

yes he was with me when I went to neuro,I think your right he is scared but  I am as welll.

He almost dosent want to even mention the dreaed words PD.

I have no idea about a PD nurse in my area and no idea how i would find one.

This is all so new and all I was given was two or three leaflets and a pot of pills.

thanks for support


#5

Hi Moggie40minor, I was diagnosed on the 4th December 2013 and have found this site very helpful so far, though scares me with the stories of the possible side effects of the medications. To find out about your PD nurse etc, go to the Support For You Section on the main page (http://www.parkinsons.org.uk/content/support-you) there is a box on that screen for Find local support and you can enter your postcode there.

Hope that helps and good luck.

Cheers


#6

Hi Moggie40minor, what a great handle. I had a Traveller about 20 years ago till I rolled it down a hill. My rescuers had to prise me away from it sobbing. (Truth to tell I wasn't very good at looking after it, so I deserved to be parted from it.)

Being the OH of a PwP can't be much fun. Yes, i know it's not much fun being a PwP either,  but at least we don't get to choose. It seems a natural reaction for people to say things like "oh we all get aching joints at our age," and this does feel to me like a diminishing of the situation. But in truth it's probably the only way they can slay their own dragons. It takes time to get to grips with a dx - for both of you. You'll both be scared, both for each other and for yourselves - that's scared squared!

Be kind to yourselves, take it easy, and if I'm anything to go by it'll get easier to cope not only with the PD but with each other.

And keep posting!

Best to both of you

Semele


#7

Hi Semele,

I love Morris minors the sound they make is very distinctive.

oi spoke to gp today who wants me to have X-ray to check there is nothing else going on with my legs and hips.

the day I got my dx 3weeks ago I said to my hubby that he had a choice to make and he could walk away at that point if he wanted to,he said no way.

PD is not going to rule my life however at the moment it's all new so I am thinking a lot about it.