Been a year now


#1
Hi all been just over a year now since diagnosis, would love to hear others experiences of first year, progression etc

#2

 

Hi

it's been about a year for me as well


How too sum it up? i feel pretty much as i did last year but  a year on i am taking more pills too stay the same, I can feel things moving progressing slowly along that's the intuition my body is telling me but at the same time although some days are worse than others i feel for now reasonably stable knowing my own limits and the expectations not set too high each day is different to the last or next.


#3

Hi

I am 62 about a year for me too- doing ok  and finding the sinamet really helps.  the odd off day but I  used to experience them anyway!

Worst problem is occasional walking difficulty - scuffing foot as i walk - so need to up my exercise levels

keep battling on!


#4

hi  sea angler

Its been just over a year for me.I have good and bad days like you..Just lately its been more bad days. mainly being head and neck pains,cant seem to get any answer if its Parkinsons or not .Have tremor on right arm and leg. My right leg is  stiffening  up,need to do more exorcises !!!! Know what you mean bout every day being different


#5

Hi  

Im 61 diagnosed 18 months ago ,just raised sinamet to 4 times daily not really sure if it is helping much . have tremor in right arm  and leg also drag right leg, yep need to exercise more 


#6

 

Hi Karp

I think sometimes our Neuros & Nurses perhaps have much expectation of high results putting pressure perhaps on us too be those results they expect,when change is slow or minor And its hard too analyse every moment of the day & record all of it in the mind too regurgitate months later.  staying the same for us or feeling good or reasonable  is a different reality of same or feeling good as times moves on but we certainly feel it on bad days. i'll settle for reasonable.


#7

hello it is almost 3 yrs dx for me on a good day i am fine but on a bad day i just want to go bed alone and wake up feeling normal but i battle past that pd or not i am the controller of my body not my b**** PD she can go to hell and stay there.

 

bb xx


#8

28/10/14 (6:35pm) for me, young onset as I was a youthful 49 at the time.

Slowing down a little, refusing to give in to it, trying to keep active (cycling, walking, running etc.) and started on medication, Sinemet Plus.

On a good day, I feel almost normal, on a bad ... well, less so. I think most of the problems are on the inside, hence "the darkness within", and as to the speed of progression/degeneration, I'd say with my happy-head on that I'm not much worse than I was when officially diagnosed. Like many of you, knowing means you can usually trace back your symptoms months if not years, at least 4 in my case.


#9

Hi, it's been 18 months for me since my dx. I have had my ups and downs sorting drugs out, but I'm still doing all the things I was before the dx. Some days I feel like sleeping all day and night. Other days I'm raring to go. I do karate twice a week for 3 hours at a time, I go to Zumba once a week, I swim and work full time. I know this sounds a lot but I'm not giving up Easily. I will admit I do have the odd bad week,  where I'm not at my best but most of the time I'm the same person I was before the dx. I have great friends and family but I do feel they don't always understand because I'm still smiling. I think sometimes I need to open up more and talk. 

Chop chop


#10

 

difficult sometimes for people around us too see the changes & how we feel underneaf when its happening slowly or gradually, perhaps if they cant see a difference then they don't notice a difference? and just think 'they're ok'.  might think i wish they'd ask.


#11

Hi 

my oh was diagnosed 10 months ago aged 43 and he says the most dramatic decline has been in his energy levels, his sleep patterns have really suffered and the pressure to work exaggerates this. Some days he can play a full round of golf and other days he feels so exhausted that he can't work and just feels so tired he goes to bed, he can't judge this at all. The frustrating thing is that he feels people look at him on a good day and say that there isn't much wrong with him.

Klou

 


#12

Oh the woes of "The Darkness Within" - categorically the biggest challenge for me has been on the inside - apathy, depression, anxiety, guilt, pain... the clumsiness and slowness is nothing by comparison.

Took me 3 months to get my head around the whole diagnosis and impact sufficiently to tell my wife - ultimately a mistake as she felt I was keeping something from her and suspected something else.

Self Hypnosis, exercise, good friends, and (too much) beer keep me almost sane.


#13

I have had PD nearly 20 years, so I know that in a way I don't belong in this discussion.  But at first I had a loving, considerate husband who understood my problems and helped me solve them without undue pity.  When he died rather suddenly in 2012, I almost felt as if I were starting all over again. 

It was difficult to face the fact that I would have to do everything around the house myself, including taking care of my own medical issues.  Grief and depressed spirits went hand in hand for a while.  But, as others have noted, the best tools for fighting back are exercise and friendship. Since my husband's death, I have made new friends in addition to my old, reliable friends.  I am also spending time on new pursuits (practicing at the piano again, publishing a book of poetry via Amazon, hiking four to five times a week).  The major difficulty now is finding the right balance between keeping busy and overloading my schedule.  Life goes on . . . .


#14

J You most certainty do belong in this conversation 20 yrs dx means you have the wisdom and the voice of experience. I have since I joined this forum held the deepest respect for your wisdom we are all effected by this PD hell that has latched onto us without invitation.

I am very straight talking and I know of no other way to be, as I'm sure you already know but my style of words do sometimes get me into troubled waters so sometimes before I give advice I go through various post to see what others are saying and as stated have respect for the way you explain things to those who come on here seeking advice. And like me you had decided a while ago now to changed your avatar to a personal picture I can remember complementing you as a very handsome woman and if I do not respect someone I would never ever complement them no matter what they looked like.

Kindest regards BB.


#15

Thank you, BB!  Your words mean a great deal to me.  As anyone could guess by looking at our photos, we are very different women, but we probably share more than most people would expect.  Our outlooks and opinions seem often to coincide.

Best wishes from J


#16

you're very welcome & i agree we are very different women but In my

world that means we are unique bb xx