My thoughts


#1

As Parkinson's awareness week approaches it draws me into thinking of my own experience...which I rarely do.  I've seen lots of videos shown on fb of people with Parkinson's giving a view to the 'un familiar with Parkinson's' general public.  I have found some shocking, some scary and some very sad.  I was diagnosed in June 2011, I initially refused any meds and ended up almost crawling to my neuro appt after 18 months (not recommended).  When I did enter the world of sinemet plus and azilect, I made sure I was aware of what I was putting into my body.  I researched and listened to other people's advice and experience.  After almost five years, luckily, I feel in control.  I know that I could not function without my sinemet plus.....it tells me so if I dare to be late.  But life so far is ok, to any newly DX, please don't be too scared....there is life after Parkinson's.


#2

Hi Ali p

Great post. Couldn't agree more. I was diagnosed a year ago but had long suspected my "benign tremor" of the previous two years (diagnosed by a stand in doctor), along with various other symptoms was more like PD. Eventually my husband insisted I see a doctor again about my "funny" left hand. My regular great doctor diagnosed PD and put me on sinemet straight away, saying there was no point waiting. Neurologist later confirmed this. This lovely knowledgeable doctor has now retired and there is no other doctor in the surgery with a knowledge of PD unfortunately.

I had quite a rough time accepting it, especially as Mohammed Ali died a short while later and every where I looked there were pictures of him at his worst and far too many gloom stories. 

What newly diagnosed people need is to hear is that it isn't the end. Granted ,life  is not the same as before, PD is not great but it is most definitely  not the end. And contrary to a lot of popular opinion we are not all in wheelchairs yet. A lot of us are still walking the dog etc


#3

Thank you for your nice comments Daffy.  I agree, it's tough to accept, and I'm also aware that we have a battle ahead...but intend giving it my all to win.  Again, thank you x


#4

Liking the positive thread. Some days you don't feel like it. So if you get up every day and achieve at least one thing however small it can make a difference to your day. Of course some days are better than others. 

For me it was a mind shift. Life is different not over! 


#5

Despite having a moaning festival at times even though now had to give up work, I can see the positives ..

1. Get to have a lie in every morning.

2. Shopping in the week when not as busy.

3.  Can now tell people I am retired rather than unemployed, as this stops people suggesting new careers like trapeze artist, children's entertainer, secretary and parcel delivery services?

4. Get to sit out in the garden when the sun shines.

5. Book days out in the week, much cheaper.

6. Over the negative scrap heap thoughts, I am now a lady of leisure.

Yep!  it's good to be positive but ok to relapse and have a pity party once in a while.

Ali p , you look so happy, must be the medicine in that glass.


#6

HI Everyone,

PD diagnosis is certainly a "mind shift". I didn't want be here but now I am I feel I've no option but to make the best of it.

I found the most difficult bit recognising my "new" limitations. Can't multi task any more, no sense of smell - mind you, on the plus side I can genuinely say I wasn't aware a grandchild's nappy needed changing!

I fumble with change, keys, bottle tops and putting small items on the washing line, tired, achy etc.someetimes. But I'm still trying to learn to accept it and not fight too hard if I'm having a bad day

BUT I'm still here,there's a lot I can still do and new things to try. In fact since diagnosis I have become bolder at trying out new things. I mean - why not while I can.

It's great being in  touch with others in the same boat, reassuring if you know what I mean.


#7

The only person that gives me a hard time about PD is myself the only person to rush me , do too much , get upset , get in the way ect ect is yes ME . Now I am at the stage where I have this idiot under control  ( myself ) and we seem to all be the same we beat ourselves up nobody else does we are our own biggest enemy  in short DENIAL  we deny ourselves thinking we can do anything but when you get your head around it and accept it it's actually easy to live with . Just learning ourselves is the trick , happy boy  Ian but it's took me a long time to settle down to it all . So good luck everyone with yourselves enjoy  yourselves   

ian 

 


#8

Hi Ian, 

Great post. I still haven't quite got this idiot under control. Try pushing too hard and wonder why I can't function the next day. But, although I'll control the idiot soon, I will still try new things and put myself out there. Enjoy yourselves is a great thought for the day. Thx


#9

Ian, more wise words!

I am my own worst enemy, haven't quite reconciled myself to what I am now and my limitations. Constantly try to do too much and pay the price over the next few days.

But keep reminding us, please, and we too may get there!

S


#10

I  totally agree with all the above. Truly  there are worse things. i tend to be part of the "keep going" brigade. And exercise when you can, and as much as possible. I even tend to walk round my house swinging my arms, and getting on and off one of the teeny chairs bought for grandchildren! No holding on!

Love to all.

Frances


#11

Hi,

I definitely agree wholeheartedly with all of the above. They all ring true, nice to know others feel the same.

Daffy


#12

Aye aye daffy 

hope cherry is doing okay not heard much of your puppy stories curious ? Buddy's growing into a spoilt dog but that's what we get them for  take care

tooraloo Ian , 


#13

Hi Idj

Cherry's doing fine thanks. House training's coming along well. She and Merlin have some lovely games together now he's finally remembered how to play. I'm afraid she's going to be bigger than him and with a fuller coat. So much for my idea of a smaller shorter haired dog next! Still it's temperament that matters most isn't it and I know the breeder breeds purely  for health and temperament. The idea of another dog now is - do it while I can.Training I mean as I'm the dog trainer. My husband likes having a dog but isn't so keen on doing the basic training.

I'll bet buddy has the best of all worlds up in Scotland with you and your wife.

I haven't posted on here a while as I'm never quite sure where to post. So many seem to know each other well, with "in " jokes and comments so that i feel I'll be intruding. And unfortunately I'm one of life's plodders who always thinks of a brilliant, succinct comment 10 days or more late, long after the conversation has moved on several subjects! That's one thing I can't blame on PD as I've always been the same.

Bye for now Ruth


#14

Aye aye daffy

if you go to social page find the thread everything except PD I will post you there , it's a good site for chat  


#15

Hi all,
This is the first day I except that i have PD, which I was diagnosed at 39 yrs and has change my life an those important people in my life… In some ways good and others Bad.

I’m a mum of 3 grown up boys(should i say men) to which I’m very proud of as they have grown up to be respectful young men…(not sure how) hehe… I’m also a very proud Nana to 9 grandchildren 8 of which I gained when I married my husband an 6 month baby girl from my middle son. I love them all but find frustrating thing now having PD effects me being able to do what I once could physically an I struggle to have the younger ones of my grandchildren if on my own. The positive is that what pushes me to now try new treatments that I was reluctant to try cos that would mean excepting I had PD. Hopefully soon I can fill my house with them play with them bake and have some fun which was always one of goals i look forward to when i was younger.
I am also a wife to which bring a whole host of problems to our marriage along with the general pressures of everyday life and our personalities…Even though I think of the effect PD has on my husband and my sons life is hard for them and I feel guilty that I or ( should say PD ) takes over. Its like you have brains one saying be normal carry on as before being strong positive and look after them which I got pleasure from but the other brain with all the negative symptoms of PD keep taking over an its best to take the nice pleasures from your life.

So now i have excepted that I have got PD and all that goes with it Today is the first day after my taking new treatment being the Apo pump which i didn’t want to try, I’m going to bit by bit beat all the symptoms that have controlled my life and start living my new life with PD… Which is still lying in bed till i take next dose of drugs which is great cos i’m chilling typing this, then going to get a shower put my friend on(the pump) go downstairs to be meet with my beautiful spinger Holly…Get lots of cuddles an play with her…AND turn the radio on and dance round my kitchen(well not like strictly come dancing but not far off) haha…
That’s enough of my crazy waffle I’ll u know how my first day went later on…


#16

Hi ollyboo22,
Loved your post. Im 2 years diagnosed and have 3 teenage sons. I get where you’re coming from guilt wise. I feel so bad for bringing pd into their lives. I’ve been on the positive track up till now but like you I think it’s just dawned in me that im not the same person anymore. Slow comprehension! I can’t do the things i used to and seeing my family watch me slow down irritates the hell out of me.
Congratulations on going through that procedure and coming out the other side with positivity. I always try to look on the bright side and its helped me through so far. Acceptance is a good goal for me to reach! Keep dancing!


#17

Hi Divine1
I used to really get frustrated with all the down sides to having PD and in 2014 had to give up work which was just one of the hardest things I’ve had to except. I struggled to have a purpose and every day was the same, and felt useless cos more often than not I was the one needing help instead of me helping others.
Well my first day was ok apart from the fact my medication wearing off after 2 1/2 hours .and muscles are tight but hope to get to appointment with my physio were I get trigger point therapy. Its feels great for 2-3 weeks. My new way of thinking is for every problem or negative there’s a solution even if not exactly how we want it… In theory anyway…Haha …Had some leaflets recently about mindfulness found some it interesting.
2nd day been ok rather than try to do too much and get frustrated if couldn’t complete I now think that anything I do is better than not, and music and singing helps the job more fun…Hope you have had a good day…