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#1
Hi I am a 66year old woman been diagnosed with Parkinsons 2 years ago I am currently taking stavelo and for me it is brilliant but my family are thinking well that is you cured keep telling them no but they will not listen how do other members get their family to accept what Parkinsons is?

#2
Hello Mawmad, and welcome.

I was diagnosed at age 53/4. I am now 57.. My mother would not accept that I had no control over my shaking. My sister, whom I see very infrequently, is not minded to know or find out about pd.

To try to answer your Q, I do not think that it is possible to "get" anybody understand just how a diagnosis of pd and its symptoms affect you or to accept it. It is a very difficult disease to explain and when family members or friends see you on a good day, they do tend to assume that it is not so bad. Those who see and care for you on a day to day basis will, at least in my experience, come to some realisation of what it entails.

Would it be possible for you to have a family member with you when you next see your Consultant? I found this to be very helpful. My O/H began, atfer my Consultant explained the condition to him, to be less inclined to tell me that I could do things if I really wanted to, and more inclined to offer and give assistance if he saw that I was struggling.

I suppose that unless you walk in somebody elses shoes, it is not really possible to know how they feel or what they need. Hence the value of this forum. We understand without needing an explanation.

I wish you all the best

#3
PS Mawmad, I am pleased that Stalevo works for you.

#4
Hi Mawmad,
Frustrating isn't it? Also upsetting. The very people you think will be there for you, often disappoint.
There is a very good leaflet that you could either send for or download , entitled
' Talking to People about Parkinsons.' Just go to section 'About Parkinsons'
It may be a help.
My guess is that some people we know do not cope very well with seeing us in a changed state from how they envisage us to be. I've come to the conclusion that these people are not true friends and so I now see and communicate much less with them.
I agree tho, with family members it's a bit more difficult. I have similar problems with a sister , and she is working in the medical world!
She cannot understand my reluctance to make arrangements, very much in advance. Whereas my Parkinson's friends are so flexible and understanding when you don't feel quite up to something you may have arranged just a few days before.
They 'Listen' , and really hear!
All the best.

#5
Hi, I have a similar situation with my mum. She has alzheimers (early stage) and parkinsons (early stage) and my dad seems to refuse to accept that the aricept she is taking (for alzheimers) is not a permanent fix. It may control some of the symptoms for some years, more likely 2-3 at most with her type of alzheimers, and then she will go downhill. So he is still working, she is home on her own, and not living life to the full like she should be, she's just waiting around for him all day.

I have read all I can on alzheimers over the last few years and am quite well informed through all my reading, and he won't listen to me, nor will he read up on it and study it to know what's coming his way.

I only wish he would, then he would quit work, give mum a couple of great years before she loses the ability to enjoy her time.

Frustrating when he goes into the neuro psych and tried to tell the neuro psych about the brain and how it works (being a tradie, he is obviously an expert on all matters of the internal working of the brain compared to someone who is a trained neuro psych.)

#6
We all have an opinion
We think is very good
We're experts on the internet
Shout out that's what we should

Friends and family have a right
To spout out what they know
Their experts in that field for sure
They know why we go slow

So lock on to those ones who's knowing
Just what you're going through
They feel your pain, they live your fear
They cry as much as you.

They're stong inside, as you must be
And often you do the towing
Ignore and snigger at the certain type
When the goings tough, the tough get going

Try not to analyse spoken words
As people love to gas
Their comments mount to nowt but gossip
So shove it up their A**

:grin::sunglasses::imp::laughing::grin::stuck_out_tongue::flushed::smile::astonished::wink:

#7
hi mawmad, i suppose i am lucky my family are very understanding my husband is great i was diagnosed 9yrs ago at the age of 43, since then i have deterorated but slowly i have had some bad days and my family have seen how this disease has affected me so they understand to a certain degree, i have found that showing them dvd,s about pd has helped they have seen the varying degrees of the disease from the early stages to the more advanced maybe that is the answer for you try to get a dvd or go to youtube it may do the trick good luck. sue.

#8
I am in the early stages and my main problem is fatigue.
When people see me they all say how well I look, when I am not coping I hibenate and few people see me, so people understandably think I am not to bad. I also reply to questions about how I am with a "I'm fine". Why?? One its an automatic reply and secondly I don't want to go on about feeling ill.

I am a carer for my mum and the rest of the family think because I am not working I have lots of time to do it. Having Parkinsons is like having a full time job.

I found this link which explains how I have to choose what I do.

http://www.butyoudontlooksick.com

I sent it to my brothers and still very little help from them!!!