If you want to go fast, go alone.
If you want to go far, go together.
African Proverb
It seems that once you think everything is under control, something happens to set you back. You are feeling so good about how you are doing, that you forget that you have limits and take on too much to do. (I admit that I am way too guilty of this). Parkinson’s lies in wait until you make that misstep and will suddenly torment you and increase the severity of your symptoms, or bring you a new set of symptoms to deal with.
On the other hand, maybe life is out of control. You have been doing too much and not taking care of yourself. You moved, your child got married, you suffered a loss. You may have felt organized at first, but at some point you realized you are in over your head. You just can’t do everything the way you used to without feeling it afterwards.
You find it hard to make plans because you just don’t know how you are going to feel any given day. One day you feel great, the next night you don’t sleep and fatigue keeps you down the next day.
Finally, You miss exercise for a couple of weeks because you are sick, on vacation or you just don’t have the time. At some point you realize that your tremor has been getting slightly worse every day, or you have become much stiffer. You feel as if you are on a downward spiral. Your meds are not working as well as they should, but you really don’t want to increase the dose. You just don’t feel good, and it is difficult to explain exactly what is troubling you.
What do you do to get out of a downward spiral?
1. Learn to say “no”. Get help where you need it. At home and/or at work. Don’t take on a new project that you know will be overwhelming. It’s ok to slow down a little. I know its hard – I am guilty of overdoing it, pretty much all the time. But remember, you are living with a chronic disease that won’t go away because you are too busy to acknowledge its presence.
2. Take a deep breath – practice breathing exercises, meditation. Parkies tend to be shallow breathers. Get some more oxygen to your brain and clear up the fuzziness between your ears.
3. Get back into your exercise routine. But don’t expect miracles immediately. It took time to get to where you are, so it is going to take some more time to get back in shape and feel the benefits of exercise on your brain again.
4. Get adequate sleep. 4 hours a night is not enough. 7-8 is ideal. However, the last time I think Mr. Twitchy and I ever slept that long was probably in college. We have forgotten how to sleep at night. I have tried sleepy time tea, meditation, yoga for sleep, no iPads, playing games on iPads in the middle of the night hoping to fall asleep, weighted blankets (which do help to some extent) various forms of CBD, etc. etc. It’s ok to take a sleeping pill for a few nights to break the pattern, or at least get a decent amount of sleep for a couple of nights so that you are not a zombie all of the time. Check with your doctor about sleep medications that may be right for you.
5. Get support from your family, friends and PD friends. Let them know how you are feeling and that you need some extra help for a little while. Don’t be a martyr.
6. Check your diet. Are you eating too much protein too close to taking your meds? Has the sugar monster has taken over your diet? If you are not sure what you should be eating, a Mediterranean diet is always a good place to start. Or check with a nutritionist. Dr. Laurie Mischley has done a lot of research on Parkinson’s and diet. Go to her website for more information
And if none of these things help, know that you are not alone. There are always Parkies on-line somewhere who are not sleeping either and are happy to chat in the middle of the night and commiserate with you.
I finally met Parky friends who I had met online, and it reinforced the fact that our common bond of Parkinson’s brings us together – and that we provide unconditional support for each other.
Twitchy Woman was featured today on Parkinson’s Life, a website for Parkies in Europe and beyond. Check out my WPC Diary here.
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