Newly diagnosed dad


#1

Hi everyone, I thought I'd introduce myself. My dad has just been diagnosed with Parkinson's, it's a disease I really know nothing about, but I've found this place, and intent to get to know very soon.

My dad is 68, he has severe Asmath with COPD, and we've always put his tremor down to his breathing. It's been getting worse over the past 6 months, with him also being very weak, and unable to walk or stand for very long at all.

The doctors have tested him to many different things, and eventually came to the conclusion it might be Parkinsons. he has seen a specialist in the past 3 weeks, who confirmed it, and today he received his MRI results in the post. I had to just scribble it as he told me over the phone, but it confirmed he has moderatley advanced cerebral vascular damage.

He has had 2 weeks on a low dose of levodopa, and upped this to full dose on Wednesday, so far no changes. I'm assuming the specialist will adjust the dose when he goes back next week.

My mum and dad live in Northumberland, and I'm down in Norwich, so it's lots of phone calls and me feeling guilty for living so far away from them. We are putting a positive spin on things with him, as hopefully the symptoms can be controlled, and it's much better to know what he has than to be fobbed off all the time by doctors, who can't find anything. At least we know, and I can try to plan and work out what we might need in the future.

So that's me, at the very start of this journey, and just looking for some support along the way.

Michele

PS, I have no idea why levodpa is below this message loads of times!

Levodopalev
Levodopa
Levodopa
Levodopa

#2

Hi Dads-daughter, I'm very sorry to hear about the three of you.

Well, I'm about five years younger than your Dad, different gender, don't have his complications, don't have a daughter. But that's not stopped me before . . .

Don't feel guilty for living in a different place from your parents - anymore than they should feel guilty for living somewhere different from you. (PS: I never take my own advice.)

Do feel you’ve made a good start by talking about “we”. I can’t tell you how, as a PwP, I am so grateful for the support and sharing i get from my OH. (PS: except when I do.)

Do take all the support you need in turn - do you know about Parkinson’s specialist nurses? Do keep asking us on the forum for help. Do niggle away till your dad gets his meds right. (PS: it’s all right not to take our advice: what do we know?)

Do keep positive (PS: actually, do follow this one.)

Best wishes

Semele


#3

Hi Michele and welcome to the forum,

There are lots of people here affected by Parkinson's either because they have the condition or are close to someone who has. As you say, it is better to know what you are dealing with so that you can arrange the best treatment. 

In addition to the forum you can get support from Parkinson's UK in lots of ways. There are Parkinson's specialist nurses in many parts of the country. If your Dad's neurologist doesn't put him in touch with one you should be able to make contact using the details on this site. You can also find the details of local support groups and information support workers who can help you find the right support.

Parkinson's UK runs a confidential helpline which is open during office hours (details at the top of the page). You can call or email them about any aspect of life with Parkinson's. 

I'm sure you will find some help for your Mum & Dad. Please keep posting on the forum too

Elegant Fowl


#4

Thanks for the welcome. Dad has his next appointment on the 19th, and is busy making a list of questions he has for the specialist. He's still coming to terms with it all, and thinks of new questions each day!

Once he's had that I will get them to get in touch with a parkinsons nurse, it sounds like a good support system, and one which we will certainly use.

I'll keep popping in here, as I'm reading my way through the main website.