'Designer Disease' - and other things I don't get..

I don't think I get lots of things about PD and all the things that are associated with it including that statement 'designer disease'. My idea of designer is something that is special and unique in a good way. Designer means quality, extra care taken. Whatever the context it doesn't deserve such a word.

Here's a few more...

It affects us all differently - Well naturally we are all after all individual, I could say the same about a cold. I believe however that there are more things in common than not.. it forces us to change, when we may not want to. It takes things away that we'd rather not loose. It tests our resolve our patience and our relationships.

I am a person not a patient - Actually I think we are both, and I think that is sensible. Not one more so than the other, but nonetheless when being a patient needs to come first, it should.

I have hope - For me hope is too passive. Again I point out this is my personal belief. I don't want hope I want to trust. Trust that all that can be done is being done. I would shudder if I thought we relied on hope.

My illness doesn't define me - I hear this a lot, but I don't hear what does define people. So many say the words but don't necessarily know what centres their life now.

People don't understand - well actually unless they have PD they cannot. Thats a good thing. Where it truly matters I suspect we do a poor job in explaining. Example: the other day I was late for something. I apologised to the person concerned but said ... I couldn't do my dress up, my fingers didn't work. Its like being a child again and being dependant. I'm late because I got frustrated and pulled my wardrobe out finding something else. Hence the time and the skirt. I think they got that.

Anyhow Monday, great week ahead so many at the WPC. Plus I have drums to play! Must dash.

Your patience and tolerance as ever appreciated.

CHH

[gettome]

I like what you said, which I think sums it up very well. May I use it else where? By the way I'm not sure what WPC is??

[isis6361 in reply to gettome]

World Parkinson's conference

[froggatt55]

I wanted to rely to you because, on first reading I disagreed with much of what you said but on second I disagreed with less but here goes with some comments

It is called rightly or wrongly a designer disease because no one person is the same - i.e. it is almost that each of us has our on "designed" copy. Using a cold as an analogy is plan daft

We all need hope - it is what keeps us going through all the trials that the beast throws at us but it has to be positive hope. By example, I in my 70th year and in my 11th year of PD diagnosis and have always exercised which keeps me fit and active. Last week I spoke to a group of Neurologists who are excited about a potential drug combination which may slow down the disease - but it transpired that they all think this is treatment for only new patients. This took away my hope but I turned it back to a positive hope by signing up for hard and intense boxing like training and hope that this extra endurance will slow down my PD

My PD does to a certain effect define me as I am a much better person since being diagnosed, more caring of others being my favourite

People don't understand PD - well the number of people who have seen me in social

situations going from almost gregarious (I have never quite reached the heights of my pre PD life) to almost zombie like - certainly withdrawn - and have sought me out later to understand what PD is doing to me is extraordinary. it is up to us to make people aware and therefore make life easier for the PwP they come across

Finally, I am sooo jealous of you being at the WPC. I was in Glasgow last time but could not justify the expense for Montreal - have a wonderful conference

Bob

[Hidden in reply to froggatt55]

Hello Bob, thank you for your post. I wake up in Scotland today not Canada. I turned down the chance to go because of other commitments. All of us have views and opinions and no one of us is wrong, we are simply sharing. Sharing is good. This community is good. In response to your response ....

My cold analogy was not making a comparison to PD but to say 'this disease affects us all differently' doesn't hold much value to me. Life affects us all differently. We are individuals. And I find so many of us with the same impacts we all handle them in our own way.

I didn't say there was no place for hope. I said I need something stronger to back.

People's understanding can be directly equated to our ability to explain and describe. I am simply saying lets do a better job of it.

Of course PD defines part of who we are now. I personally never say ' it doesn't define me ...' I am saying to those people who do say that to think about what does. Clinging onto words is not what I feel we need.

I too was at Glasgow. Yes it was good.

Hope Tuesday finds you well.

CHH

[froggatt55 in reply to Hidden]

Hello CHH, I am just back from Yoga so am feeling very relaxed yet mobile. I have my fortnightly massage from my physio at 16.00 (almost forgot, I have my Flu jab at 13.45 - what a full life I lead!!)

I fully endorse the belief that we all have opinions and views which are neither right or wrong - just different - and we are all enriched with the sharing of these.

On the question of "stronger then hope" how about Faith? Not in the religious sense (but see below) but in one's own ability to change things - for example I have faith that my enhanced exercise regime will make a difference to my well being with PD. The science of the brain is a long way from being mature and I have talked to some neuro-scientists who believe that the current approach with drugs - whilst all we've got just now - is not taking us forward in any meaningful way and a radical approach is needed. This is where physics of the brain comes into play and some sort of reverse engineering is perhaps the way forward. My own view is that as DBS becomes more and more sophisticated therein will lie the cure - in the meantime I will continue trying to beat PD into submission!

I have a friend who is a Christian Scientist and we have had many discussions on their belief that illnesses are simply something that go wrong with the body and needs to be put right by faith and support discussions with church elders (for want of a better term). Had I not started down the medication route I might have been tempted to try their Faith - but using both is not possible because of the dilution of Faith with the dependency on the drugs. I must add that this is my conclusion of our discussions - not hers

As a Scot, I cannot say that waking up in Scotland is so bad!

Do you sleep well? I find I am waking up about 06.00 then after a fruit smoothies - blended by myself - and emails, Facebook etc, I go back to bed about 7.30 and sleep soundly for up to 3 hours> it can interfere with the day but that second sleep is so refreshing

Kind regards

Bob

[Merlofriend in reply to froggatt55]

You are right about not being able to mix CS and medical treatment - the former do not allow it. My parents were both Christian Scientists and brought me up as one. There is little to recommend it apart from the placibo effect, and believers die earlier. The fall in numbers of adherants is in proportion to the rise in medical skill and effectiveness. Please do not be tempted!

[quirkyme in reply to Merlofriend]

well said and important to say.

[PatV]

I get your point about 'designer' disease. I hadn't looked at it that way. I looked at it as it affects everyone differently, e.g., one size does NOT fit all. We do not all have tremors. It can affect one side or the other. I have visceral off, very rare. My handwriting becomes bigger, not smaller, and my voice is still loud, but I work it!