On and Off


#1

Hi

I have reading the post on the forum and I am amazed by all the different medications and symptoms that people have.

I realise from reading the post that I know very little about PD even though I have it, one thing I want to ask is what do you mean when you say On and Off, that is mentioned a lot and I have no clue what you mean.

I do want to learn more about PD but then I think, is it best not to know and just take each day as it comes, so it is a catch 22 situation.

 

Beatrice x

 

 

 


#2

 

On: That time span when the dose your on is effective and a feeling of normality

Off: when you feel Rubbish as the effective time of the dose has expired


#3

Hi Sea Angler

Hope this message finds you well.

Thank you for the info, I kept reading about on and offs and thought, I need to know what this means.

 

Thanks again, take care

Beatrice

 

 


#4

Hello Beatrice,

On; med's are fully functioning you will feel as close to normal as is possible

 

Off ; normals no where to be found symptoms taking hold of you painful stiff joints tremor kicking in movements problems swallowing and saliva problems bowel and bladder problems in fact every symptom you have getting hold off you. 

 

For me this means crippled in a wheelchair with distonia attack from hell twisting and contorting my body out of shape hurts like hell makes me angry and vulnerable all at once. I hate it hate it hate it.

Mine is aggressive but it will not win I will I have to.

 

BB


#5

Hi BB

Thank you taking the time to respond to my post and also for the information.

I have early onset Parkinson's, the tremors can be challenging at times, however, after reading your post and the pain you suffer, I realise that for now I am quite lucky (if that is the right word).

You do seem a very strong person from what I have read and you are obviously a fighter.

I really wish you all the very best.

Please keep posting as I would really like to know how you get on with the DBS.

PD is a battle that you did not chose to fight, but I am sure that with your strength and determination it will be one you win.

 

Bye for now

Kind Regards

Beatrice

 

 


#6

HI beatrice,

good to hear from you if you have any further questions feel free to post to me or private message me,

how i cope with this uninvited heap of c**** is by helping others helps me to then help me.

My post off state is where i will be sharing my DBS journey I hope that it can help others whom do not have the attitude and confidence i have when i ask the Dr's the difficult questions.

My best to you.

Kind Regards BB xx


#7
Off state post updated re DBS XX

#8

Aye aye Beatrice 

                  Thanks for your post , been reading some of your posts and like all of us you are curious about PD but when you hear read and see all about PD I sometimes think you are better just to deal with it as best you can with your p nurse and your p advisor as and when you need them as we have similar problems but yet we are all different, and do your best to live a happy life don't let it rule you sure you won't ever be perfect but make the best of your life enjoy yourself, 

ian xx


#9
Hi Beatrice. My DBS has been done now I am home in Lincoln with hubby and fur baby my cat MrDude I am over the moon with the results. Yes early days but things can only get brighter now. BB xxx

#10

 

Hi Beatrice, 

This Parkinson beast knows all the tricks and targets each individual in different ways. Geting medication right can be a pain in the bum. Switch-offs can mean within five minutes you can go from ok (relatively speaking) to being immobilised.

 

Hi BB,

You are an example to us all. What a fighter!

Hope things post DBS have meant an improvement, Your last report sounds optimistic. What a brave battler you are. 

Jules77


#11
Hello Jules77. I have been given my life back I feel PMA makes a difference. I urge those of us whom are prepared to go down this root do it sooner rather than later. It seems to be that much more effective if you are younger as that probley gives you more fight younger generally means stronger. And thank you for your best wishes. Don't forget anyone can ask to have this done you don't have to wait for your Drs to suggest it. Already 2 friends of mine are now planning on getting it done and one of them I only met today. My best to you all. BB xx

#12

Hi BB,

Thanks for your greetings

Due to my age (a few days off 79) and other medical issues, I'm told that DBS is not an option. My Distonia attacks, although painful are not as crippling as yours were, my biggest problem is significant switch-offs that sometimes immobilise me.

Am signing off for a few days. Had a fall during the night needed stitches.

Good to hear from you

Jules77


#13
Hello mate have you been offered entacapone or stalevo they lengthen to life of l-dopa on a good day I would get 6hrs out of mine which is 2 x 62.5mg with 1× entacapone 200mg. Pre DBS and post DBS. worth a look maybe. BB xx

#14

Hallo all. I did  wonder if I would be ineligible for DBS because of my age . I`m a relatively fit 72 year old. I don`t know when the cut off would be. I still manage to do quite a lot and do as much walking as I can.

All the best,

Frances


#15
You can always ask Frances I think it may be 70 or 75 but might depend on hospital you get referred to. BB xx