After fighting PD for years


#1

It infuriates me how the media always has PD as a fatal disease and also how they choose people who have severe signs like Ali and Micheal J Fox which i believe paints a false picture.I have had PD for 15yrs minimum and having found the right tablet mix  have worked on successfully for the whole time. Which makes me belive i am slowly becoming one of the majority of sufferers and that we should be painting a better picture for the newbees.How we do that is up for debate,but life can still be enjoyed with slight twists to peoples routines.Yes its more complex than i explain but its worth a debate.We can all help each other.


#2

I was diagnosed in October this year and what I have read it's such a complex disease that no 2 people are the same and maybe that is the problem. Glad you are still doing well after all this time as this gives me hope.


#3

 

All i knew 5 yr's ago was 'ali and m j fox'

A friend told me a little more when he was fed up off seeing my tremor that he'd seen for 15 yr's or more, he didn't paint a good outcome of what he knew in experience, work had noticed, customers noticed and some other friends, i just shook it off as a shake, i'm young (then) thats something old people get, or mj fox or ali.

I've come too the point i can't work i've burnt out physically and mentally, I am optimistic about the future, I dont want too be a burden, but, Sorry mr cameron, at the same time my body, and mind is telling me this is the reality, If i'd gone too a doctor 20yr's ago, would life be different??.

But then i'd never heard off 'ali and m.j fox' and a doctor would prob say 'thats something old people get'.

Do we need more 'ali's and m j foxs'?? yes i think so, no one's bothered about joe bloggs or jane doe on the t.v or radio or print, memories faid as mine does these days.

 


#4

Hi I'm 57 diagnosed in sept 

it's helpful to talk to others similar age, still working . The disease affects us all differently but we all have similar issues . 


#5

Lugmeister, I have never  seen PD described in the media as a fatal disease, but they do stress the (visible)movement symptoms, whereas there is a whole plethora of other  problems that in the course of the disease can be as devastating or more as  "just  movement problems". I think you are not in a majority, you are extremely lucky  in having a form of the disease that is slow in progressing. Neurologists(PD specialist e.a.) would tell you that the majority of patients might have a number of good, drug controlled years, generally 10-15 years, but then the symptoms become harder to control for the majority of people. Some will do perfectly well for several more years, others have already become severely disabled  and no-one can tell in which group you fall, but over time most of us can expect deterioration. Ali is certainly not an ordinary ideopathic PD patient, neither is Michael J., who was very young when diagnosed. The majority of patients are over 60, if not 70, when diagnosed and their disease pattern is  quite a bit different from the juvenile form. A lot of people on the forum are fairly recently diagnosed, seeking information and homing in on anything positive. You have to, hope keeps you going, but over the course of years you slowly realize you have to scale down your expectations and hope to catch the tail end of some significant breakthrough in treatment. I was diagnosed over 15 years ago, but now the disease starts to bite.


#6

Thankyou for your post lugmeister . I am 45 recently diagnosed newbie and yes someone who is ' homing ' in on anything positive as its helping me to cope . I am aware that the illness progresses at different rates for different people and who knows what category I will fall into . I have not seen the illness ( refuse to call it a disease but I'm not in denial ) portrayed as a fatal / terminal but sadly some people react like this when you tell them . I think there needs to be much more public awareness and education . Most people I have spoken to think pwp have tremor and are unaware of the many symptoms and how they impact on daily life . Hopefully as time advances they will come up with better treatment of the illness maybe not a cure but something new or something using drugs we already are using for other illnesses . It could be a drug that's used for diabetese or another illness that has already been very thoroughly researched and might not be years and years away . We live in hope , and in the meantime try and keep positive and enjoy life as well as we can . Life can still be good and sometimes it is the tiniest things that make us realise this . 


#7

Well said lugmeister regarding the media portrayal of Parkinsons.

Kate.

Far too often I have  read in the press that, such and such a well know name has died from  Parkinsons.I have even contacted PUK head office regarding this matter.

I have also taken to task some journalists on their irresponsible reporting on this matter; Ephraim Hardcastle beng one who I e mailed and I did not even have the courtesy of a reply.

However, it's a catch 22 situation in some respects. We need celebrities to raise the profile of Parkinsons and, at some time in the future any one with P may have severe signs, such as those exhibited by Ali and Michael J. It is NOT a false picture, it's the unfortunate truth of this insidious disease.

I do agree that long time members of the forum should try to post postively, as much as possible; it's a bleak place otherwise for the newbies if it's all negativity and there is a great deal of those types of posts.

So, to get the positivce ball rolling; my OH was diagnosed aged 47 almost 17 years ago. It has not been all plain sailing in the last few years with many hiccups, a major operation due to a complete bowel blockage (P muscles affect internal muscles as well), having to have carers in earlier this year when he dislocated his shoulder BUT, 17 years later we both hope to still have  quite a few more years where we can do what we want and travel, as we have done for many years. Some days he cannot get out of a chair but today he walked to town, albeit only 10 minutes away.

Our local P branch Kate has an average onset age of far less than 60, let alone 70!!


#8

 

I quite agree with you Maddison in what you say. I was diagnosed when I was 59 but had symptoms when I was 58. Up to now it has been slow in progress and hope it stays that way for a while longer. We all live in hope and make the most of how PD effects us in so many different ways. I stay positive and live life to the full as much as I can, we should all stay focused.

 

Sheffy xx

 


#9

All I can say is this:  in the almost five years since I was diagnosed, three friends of my age or under have died of cancer.  I’m just glad I took the decision to stay positive and carry on enjoying my life as you never know what lies around the corner.

Still here, and still wearing the stilettos ….


#10

 

Still wish I could wear stillettos Lily!!

 

Sheffy x


#11

I'll be wearing them in years to come, Sheffy - with a colour-coordinated walking frame!


#12

 

LOL!!


#13

Good for you lugmeister. Its people like you that really help. positive feedback is what we all need. Starting on levadopa tomorrow after 2 years on just azilect. Trying to be positive and your comment is just what I needed. Best wishes. Libby