One Question For Everyone


#1

 

Are there many people here who have been diagnosed over 2 years and are still living the exact same life (with or without medication)?

I wonder if there are legions of PD'ers who don't come near the forums as they're just getting on with things? 

Thanks! :) 


#2

Hi Hughes,

I was diagnosed over 16 years ago , did not start until two years later on any drugs. This is quite common, especially for the Young Parkies. Among these there are  many that do not have any serious problems initially, and do not want to dwell too much on this disease. You can spend a lot of time on several interesting fora, but you could be enjoying what is still possible instead of sitting at the computer. And then there are lots of people , who are active in the beginning, but find that the same questions are asked again and again on the forum and the answers are already there in the archives. You could probably stretch your question to the first 5 years for a lot of people.

In the later stages of the disease I find the unpleasant Parkinson's symptoms are already given so much attention during the day (and doctor's and hospital visits) that you crave distraction from the subject. 


#3

Hi Hughes,

Two interesting questions.

I perceive that I've gradually got slightly worse over the five years since diagnosis but not that much, until the Distonia started that has had some effect on me but I'm still doing most of things I like doing and keep active.

My sister has had PD for 16 years and has had little change in symptoms except she has gradually worse with Akynesia (freezing) but she's getting on with things and has never been on the forum.

I'm sure that most people that go on the  Forum are just "getting on with things" as well. Do I detect a slight query as to why people need to use it? 

As a new user of the forum, I'm sure there will be a time when I no longer want to or need to use it. Currently I find it useful. I don't want to spend time however trawling thro the archives as Kate put it.

good luck.

Jules77

 


#4

 

I suspect i had Parkinsons for a long time, things changed or my ability changed i just absorbed them into daily life without drawing them together, until that point where i became self aware something actually was wrong,

i'd became ill, i learnt what it is and now i have a label for it, I'm learning Parkinsons is many things much more than just a tremor, the initial or public perception of it, inside and outside it effects much, it was there all those years ago, they might not have been serious or even remarkable back then.

Circumstance currently prevents me in doing 'whats possible' a log jam cr*p i need to climb over, I would much rather be where i was, who i was & with but, that's life. i'll get on when time allows.


#5

As a member of this forum for many years there is always something new to learn from others and also, sometimes, something that I can contribute, through living with Parkinson, as a carer for my OH, who was diagnosed aged 47, some 18 years on.

Yes, there are probably many who do not wish to access this forum because it is rather  doom and gloom at times, (the good news section would be a good addition, take note Admin.). I can't see a time when I will ever not need to use the forum as the exchange of experiences is of real importance to me and I think to many other members.

Hughes, 18 years on, of course we are not living the same life, I wish!!!

I am the membership secretary of our local branch and I receive, every month, a membership list of those who subscribe to PUK for our area. Over half of those members do not attend our meetings.It took me a long  time to get my OH to attend our meetings  because he did not want to see what the future held but we have just been to one of monthly meetings today and it was indeed a great afternoon. The buzz was enormous and only quietened when our guest speaker rose to speak to us.


#6

Post disappeared...grrrh!!!

 


After getting a bit worked up when end of the so-callled five year honeymon period was looming, , tweaking of the meds. sees me six and a half years after diagnosis at the age of 69,  back to feeling normal  95% of the time with occasional mild dyskinesia..  The only thing was that I thought I would not be doing any long-haul holidays but even that has proved to be untrue as I have the chance to go to China with my Tai Chi group.

I come on the forum in case I can help others as I have been helped  by the forum
 given that PD UK's recent  survey confirmed that 60% of people are given no information whatsoever at the point of diagnosis

 

 


#7

 

60% that's surprising but then my neuro had a dusty ruck sack beside him, from it he pulled out a little blue card from a pile of hundreds, "you'll find out all you need to know here" with the website on the card. perhaps he didn't think in the 7 months previous too him saying '' i think you have parkinsons'' i might actually look.

 it does seem the option is the way we'll know if is others tell us or we can read from others, or the page's of it ~ needing too know as it comes up in our lives.


#8

Dear All,

Thanks for taking the time to reply. I'm 39 and about to be diagnosed. Symptoms have been hovering for about 4 years and I put the pieces together myself though my Neuro isn't convinced yet (I'm right, she's wrong :). The latest symptom instalment (balance problems) is now swaying her into giving me the DAT scan I asked for a year and a half ago. 

I think it's great that the forum is here. Sometimes it cheers me up, other times it scares me- but it's great to interact with those who understand. A live chat room would be awesome. 

I'm about to become a Dad and my career is now taking off, so to be honest, it's a very bleak time. I can't focus on anything, there is no future, I have no interest in my impending fatherhood and I'm just trying to think of ways to end it. This isn't a 'cry for help'!!! I'm very practical and I've watched an immediate family member slowly drift away with PD, I just don't want that for myself or my family (again). At the moment I'm lucky as no one realises what's going on, except for a few at work who've noticed the limp and imbalance. 

It's so unfair. There are so many low life morons who offer nothing to humanity and they live to a ripe old age in full health. 

Anyway, enough moaning. I'm sure you've all empathised with the above at one point or another. It'll pass. 

Thanks again. 

H.N.


#9

Hi HughesNewbie,


I'm really sorry to hear that you are feeling so low at the moment. Have you spoken to anyone about your feelings? This forum is a fantastic place to get support, and you can also speak to people about what you are going through on the phone.



I would urge you to contact the Samaritans for free on 116 123, who are available at any time. 


Our helpline is also available on 0808 800 0303 from Monday-Friday: 9am-7pm, Saturday: 10am-2pm. There are specialist nurses you can advise you with any questions you might have, or you can simply have a chat with someone.


Best wishes to you,


Min

Moderation Team



#10

HN,

I'm 10 years post diagnosis and I'm happier than I've ever been. If I focus on what I can't do, things are dire, but many of these things don't need to be done or can easily be adapted. If I focus on what I can do, life is good.

I found the year from diagnosis the hardest. All my expectations were shattered. But gradually you realize that the symptoms are getting worse only slowly, and new plans develop. If your general health stays good, you probably have 20 years of good quality life ahead of you. Make the most of them.

John


#11

Hello Hughes

at the moment things seem bleak

at the point of discovering that you have Parkinsons  all your future hopes and dreams are shattered and you are left scared and with an uncertain future I think we all have had those feelingsI lost my sister 10 years ago and I was with her for the last weeks

she had cancer and was 58 I feel lucky that I am alive and I have grandchildren but she didn't live to see her 3 grandchildren

 So at my bad times I think I am lucky because at least I am here

My sister has been my inspiration for coping

take care

Meg


#12

 

I  lost my sister at 31 to cancer meg & i lost my Girlfriend just a month a go, i'm still ticking as hard as it is, i lost but i also in a way have gained, a son in a way, he is not mine by blood, but we are as close as a father and son could be, i'm damm proud of him and the man he has turned out to be. in the darkest times there is much too live for.