Support for my family


#1

Hi 

i have recently been diagnosed with Parkinsonism and have been taking a Parkinson's disease drug called ropinerole (10 mg ) which seems to be working well my movement has sped up and I feel 100% better in my self the only problem is that my twitch and or the ant in my pants movement has enhance 10 fold.

i understand that this would happen and when I get diagnosed with Parkinson's disease they can give me medication to combat these movement problems but my family ( my wife ) is extremely worried about me and what role she will have to take on in the further and I feel that she needs some one she can talk to other than me or my dr is there any such service ?


#2

Hi Bobby

You've found the forum - welcome! We have lots of advice and support for you and your wife. The best place to start would be our Helpline at 0808 800 0303. They can talk to you both about specific concerns and signpost to the support that's right for you. 

If you want to find out about all the support we offer, take a look on this website at http://www.parkinsons.org.uk/support for the different types we offer to you both. 

There's also a page for carers and family members at http://www.parkinsons.org.uk/carers

I hope that's a start. I know others will be along shortly to welcome you.

Ezinda


#3

Hi, Bobby

I have been trying to reply but posts have been earen by machine. I think your wife is obviously very caring and is just getting to this point has often been a struggle. I am in similar position as having a working diagnosis that is yet to be confirmed. You still feel insecure and a little in no man's land. There is a lot of supportive positive people on the forum, that enjoy life and their optimism is infectious, so you and your wife can ask questions and read past posts that can help. 

I don't know if you have a PK group in your area, they can be very supportive and have a lot of experience to share. There is also the helpline on this site. 

Everyone seems to have a different experience with pd, so you can end up worrying about issues that might not happen for you, so although you need to be informed try not to panic. Your wife can be assessed for carers needs. In our area our local adult social services have a web page where you can self refer, if that is something she needs, or something to keep in mind for the future.

At least you are in the right hands and getting help. Hope both you and your wife get the help and reassurance you need. As you say I think you will feel more supported when the diagnosis is confirmed.

Porthos