Just a question to ask how anyone deals with the “off periods” when next dose of medication is due and before it kicks in. I am experiencing down time and wonder how fellow sufferers deal with it. Do you try to keep going with whatever you are doing and struggle on or stop and rest until the medication kicks in.
I am unsure of which is the best policy and would welcome anyone else’s advice.
I find it very frustrating to be sailing along and then hit a brick wall asking myself why can I not get over it, I was fine 5 minutes ago?
June
Hi June, the OFF periods are pretty insufferable and for me it’s due to me being under medicated. However, I’m unwilling just yet to increase my Sinemet dosage so I’ve had to learn to live with the physical discomfort and the mental fogginess when I’m OFF. I usually try to avoid physical activities and just taking a rest - the next dose kicks in faster if you are in a relaxed state. I find that I can still do Wordle, and I love to sit with and pet my dogs while watching TV during my down times. Merry Christmas to you and yours!
Hi justjune,
I am not on any medication as yet, I am trying to avoid medication as long as possible, as the body does build a tolerance over time, and you find you have to increase the dosage from time to time.
I have suffered from seizures for about 20 years now and find that every 2 years or so I need to increase the dosage.
I have been on my present medication for about 8 years now, as this particular one works for me with no side effects, but do know that in about a year or two I will not be able to increase the dosage of this particular one.
You do reach a time where the dosage cannot be increased and you have to switch to a new medication for a year, and then are able to go to “almost the beginning” with the dosage of the medication that works best for you.
As you know PD affects different people in different ways and the effects of medication can differ substantially.
Sorry for the long intro, but basically I too have “on and off periods” without any medication for PD, so it is not speciofically the medication that causes that.
It’s a problem isn’t it? It happened to me yesterday - I
Was shopping and one minute I was fine and the next I couldn’t walk. I just had to hold on to my husband and slowly make my way to the car with the aid of a shopping trolleyI
I don’t try and struggle on any more - I just end up getting hot and bothered and out of breath.
I have got Apomorphine injections for emergencies - they kick in in about 15 mins.
That’s about all I can offer.
Jane
Hi
I usually like to sit or lay somewhere quiet when im in a off period, if I try and carry on its hard work, I hate people fussing over me and want to help when you cant move. I find things kick in quicker when relaxed.
Hi
Ive had parky for 9 years now same medication, just.increased over the years, I was told you get 5 good years, I hd 7 so a bonus, the last 2 years Ive seen the difference and as the off periods are more then the on, I have to consider dbs
Hi what time do you take medication best bet is a 4hr window 8am-12pm-4pm 8pm. Go to bed 10pm so your able to move round get comfortable. You can always have a chat parkinsons nurse as there are loads of add on drugs ie Entacapone this will keep you ON longer .Also slow release drugs help through night time, there are alot of medication out there still.Stay positive.