New to site


#1

Been wanting to say Hello for a while now, finally picked up the courage to do it!

I was diagnosed with PD last August.  I started medication straight away and it was decided Sinemet was the best route for me to take.  Could not believe how much I improved, thankfully.  As time went by I had to change to Sinemet plus.

Earlier this year my Movement Disorder Specialist wanted to try reducing my Sinement which was 4 daily to 3 daily replacing the 4th with Ropinirole 12 mg.  His thoughts being because I'm only 45 it would be best to try and cope without Sinement if I can.

Now I can't see any vast improvement but only recently gone up to 12mg of the Ropinirole.. 

Think the honeymoon period is over as I'm feeling very scared of what my future my be like living with PD.

45 years old and Mum to a beautiful little 3 year old who keeps me on my toes.

Wondering if there's anyone out there with similar experience, advise they could share.

Thank you.


#2

Hi Kazlar,

I very rarely come on the site as I don't have a lot of confidence.  I do know that there are a number of people on the site who are well informed and are willing to share their story and give advice that I know is a lifeline to people, it certainly has been for me.

I have had pd probably 12 years now, dx 7 years, my symptoms started when I was about 43 years old.  I was started on rasagiline, then added pramipexole and now take a low dose of madopar.  I see a neurologist about twice a year, my GP less.

I do work hard at the physical side of my therapy.  I have a fantastic physical therapist who I see weekly.  I use a Galileo machine daily and I exercise most days (not a lot, just 15 - 20 mins).  

I know my body and what it needs and I listen to it.  What I find the hardest to live with is the anxiety.  I am waiting to see if I am successful with a trial for people with pd and mindfulness.  I feel this will help me to live in the moment, not be fearful too much of the future.

PD symptoms vary for everyone, but what I know helps me is that I have taken control of me and that to date I have lived well and adapted were needed to live with PD. 

Your little one will keep you active, but don't be afraid to ask for help when you need it.  

jujux

 

 

 


#3

 

Hi Kazlar, welcome to the forum. the only thing i can say to you, is that you learn to stay focused. You will have good days and bad with your meds, you may also find already that it takes a little while for you to accept that you have PD, after six years I am just coming to terms with it! You learn to know what your body needs so accept any help you are offered with thanks so don't shy away, and with a young toddler to care for you will be glad of it!

I  wish you well, take care - Sheila

 


#4

Hi JuJu,

was interested to hear you say that you are waiting to see if you can get on a trial for people with Parkinson's using mindfulness. Would love to hear if you do get accepted and how you go on if you do. I find myself getting wound up about things I never would have done prior to my DX last year at aged 60. Have wondered if something like mindfulness would help.

su.


#5

Hi su.

I have suffered with anxiety most of my life and its been much worse with the PD.  Its harder to deal with than the physical effects.  I hope I get the opportunity to go on the trial because I would rather learn how to cope without having to take yet another medication.  I am convinced it will help, will let you know what happens. They may be looking for more participants, it doesn't involve travelling.  If you want the details, message me.

juju x


#6

Hello ladies,

Just wanted to say thank you for your messages.  I am also interested with your trail Juju, so if you remember, please let us now how you get on.

Thanks again.

 

 


#7

welcome to the mindboggling world of PD

 

Husband got PD and has suffered Depression all of is his life. His anxiety levels are rather on the high side and depends on medication and how well they work some days are better then others.

Done Mindfulness free via local health department and he does NOT like group sessions so went and bought book from Oxford Professor with CD to do exercises and they have helped him get grounded. Can fully recommend Mindfulness to anyone with or without PD


#8

Hello kazlar I also am new to this site had pd 3 years but diognosed 1 year doc put me on 8mg rotigone 24 hour patches but I was still freezing so they added sine met  as well I don't freeze so much but my walking gets pretty bad if I go towards something as I reach it my steps get smaller it's like a stutter in my legs not nice but it's good to hear it works for you iam due to see doc next week so here's hopeing your child will keep you going alright , it's nice to hear from other people that have had pd a lot longer than we have and what I've heard it's not the worst thing ever take care all the best Ian xx


#9

Hello there,  hope you don't mind me asking what medication your husband on for anxiety?  I'm becoming more and more anxious unfortunately. 


#10

Hi Kazlar

Going back to your initial forum entry you say you are also on 12mg of  Ropinirole a day which sounds quite a large dose to me, I am currently on 8mg with Levodopa 150mg I must say that I am having some nasty side effects because of the Ropinirole including Anxiety attacks to mention just one from many I would suggest you google for info on that drug it may  be a bit of an eye opener for you :-((

I certainly have it on my list to talk to my Neurologist to look for an alternative drug. I was actually going to ask about Senemet, do you have any side effects from this?

But as it is highlighted many times us sufferers are all different and what is good for one is not necessarily good for someone else.

Good luck

Graham


#11

 

Hi Graham - I take 16mg of Ropinirole a day, with little or no side effects. I know a lot are effected by the side effects but I'm one of the lucky ones. Been on the same meds since being DX six years ago, started on 2mg to present day of 16mg. No other meds added just Ropinirole XL slow release.

All the best - Sheila


#12

Hello Graham,

Thank you for this. 

Sinemet seems to be fine for me.  As for Ropinirole I have noticed that I've become more anxious which then makes make symptoms worse.

Going to talk with my PD nurse.


#13

Hi Shefinn

Thanks for your reply I guess with any type of drug affecting different people in different ways it may be that I am the unlucky one that cannot take this drug, although I have also read various forum entries where the problem seems to be the slow acting version of Ropinirol (which is what I am taking at the moment), I may have to go down the route of taking tablets during the day & not all in a oner certainly worth a try :-))

Regards

Graham

 


#14

 

Just found something out about different brand versions of Ropinirole. Have been taking the Ralnea brand of this medication for the last six years with hardly any problems, due to NHS cost cutting my Ralnea brand was changed to a cheaper brand called Eppinix Ropinirole. The extent of the change to my wellbeing was  unbelievable, I went downhill in a matter of days, my walking turned to a shuffle etc., I'm all for costcutting but not to the vast change in my health. I am now back on my original brand

Take care - Sheila

 


#15

Hi Kazlar

hubby is on amitriptylin for his depression and anxiety, He was on different meds prior to diagnosis, but consultant said amitry... is much better for him. So we changed and not looked back really.

Talk to consultant, parkinsons nurse and GP but there is something out there that will help. Breathing and mindfulness also calms the nerves for a while