New to forum


#1
Hi I'm new to the forum so wanted to introduce myself. I'm a 38 year old 'girl' with a lovely Dad with Parkinson's. He was diagnosed 5 years ago just months before he was due to retire. In the 5 years he has had this condition I have watched my fabulously strong, upright and fit Dad reduced to a shadow of his former self. My mum is his main carer and she struggles daily with the memories of how he used to be.

We get on with life but its hard as there are so many other problems that come along with this condition he's particularly suffering with his legs at the moment they are horribly swollen and nothing really seems to be getting done about it. Does anyone else suffer with this? He also cut his leg 2 years ago and that has opened up again and the GP thinks he might have an ulcer.

He told my mom yesterday that he wants to die! I think he was having a particularly bad day but even so, this is a heartbreaking disease and its reduced me to being a little girl again not wanting to watch my poor Dad go through this hell and not being able to make it better for him.

So I'm sorry for going on a bit and I'm not sure if that was an introduction really. Just feeling very sad about it all x

#2
Welcome to the forum MrsT.
I'm sorry to hear about the problems affecting your family. I was diagnosed 8 years ago aged 39. I understand from my own experience and others in this forum just how Parkinson's affects the whole family and not just the person diagnosed.

I have not experienced the swelling that you describe but I know that other people here have described the same thing. Do you know which drugs your dad is taking?

I hope you find the forum as supportive and informative as I have done.

Elegant Fowl

#3
Thank you for the welcome and reply. My dad is on Ropinerole and Sinemet. I wonder if his lack of mobility is causing the swollen legs?

#4
Hello Mrs T

I take Ropinirole and get some mild swelling sometimes in my ankles, usually after walking too far and getting over tired. If your dad has bad swelling and has it often, make sure the neuro knows, it may be there is another drug that would be better for him.

#5
Welcome, MrsT. Do ask your father's doctor about the Sinemet; my husband had very swollen ankles for years while taking Sinemet, and the swelling disappeared within a few days when he stopped it. Best wishes.

#6
Hi MrsT (not to be confused with Mrs.T. or Mrs T)

If nothing appears to have been done to advise or help you with your fathers swollen legs then you need to ask your GP again what the problem is and how he is treating it, if his answer is unsatisfactory then seek a second opinion and ultimately a new GP

#7
Hi MrsT

Welcome, I'm new to this forum too and hope there will be lots of advice sharing and also somewhere for me to talk honestly about my feelings to all of this as my parents don't talk about it.

My Dad also has swollen legs all the time, we try to get him to exercise but he doesn't always have the energy, I also encourage him to elevate his legs at times but it would be good if we could find something that helped better.

I too find this experience heart breaking as my Dad has told me on several occasions that he has had enough of all this and wants out, I just wish that I could have my Dad back as he too was due to retire not long after being diagnosed so feel liked he has been robbed :cry:

#8
My husband has had very swollen legs feet and ankles and tummy he is on Sinemet . .They are reduced since lowering the dose and coming off one of his BP tablets. Keep his legs raised often and make sure he keeps his ankle and feet moving by wriggling them .

#9
Hi Mrs T,
You sound like I feel!
It seems so very cruel that this disease has stolen our Dads` retirements doesn`t it?
You too sound worried about your Mum.My Mum tries so hard ,but I can see how it is wearing her down. She escapes once a week to line dancing,which does her good,but other than that it`s constant isn`t it?
I am hopeful getting my feelings out will make me feel better able to cope and offer my Dad help. Hope it helps you too.:grin:

#10
Hi Mrs T, I had swelling down the right side causing a lot of pain. My GP prescribed 20mg Furosemide to reduce fluid in my swollen bits. I still have pain but it worked for me....so far.

Good luck with your Dad