Where Emma shares some tips.
Hello, lovelies. Thank you for all your emails quite literally 100’s, I will get back to you, promise. There are a few things that have come to my attention that I want to share with you:
In this episode of the ‘2 Parkies In A Pod’ podcast about sleep…you can hear my thoughts around the 11-minute mark.
The amazing David Sangster has begun a fabulous project called Humans Of Parkinson’s
And many of you have been incredibly generous 💕 and tipped me recently. I have been made aware that the donate button isn’t easy to find…so
(None of the following is medical advice! Please consult your health professional.)
My inbox is filled with emails asking how I manage my Parkinson’s. As many of you are aware I’m currently not taking any medication. I was advised to get on the medication bandwagon as soon as I was diagnosed but I wanted to do some research and thinking beforehand. Nearly 5 years on and this do-I-don’t-I battle is still happening.
I have to remind myself, professionals and other folks that Parkinson’s is utterly idiosyncratic and we ALL experience a different range of symptoms and progression. Given there are approx 40 acknowledged symptoms (I mean does it even classify as the same disease!) it’s a bit pix ‘n’ mix! Then you have the scenario where one person can experience a rapid progression and some stay pretty much at the same level for years…phew. So, essentially this thing we have has no bloody idea what it is doing!
The following is what works (mostly) for me. It might work for you it might not, it might work after you have danced under the Jellicle moon…who knows! I hope you can find some food for thought. And please, please leave comments and share your tricks, tips and thoughts, I genuinely believe the more we share amongst ourselves the easier it all becomes.
I don’t have to worry about protein and medication timing which gives me a bit more flexibility.
I pretty much follow a Mediterranean diet with a dash of Thai and Indian. I find spicy food really helps my symptoms. In particular ginger, chilli, cardamon and turmeric. I don’t have to tell you that many of these have health benefits and there is a ton of info online.
My partner is diabetic and we started the Michael Mosley blood sugar diet and fasting regime. This proved fantastic in controlling his blood sugars and I preferred cutting out carbs. The fasting set-up is really great, and it’s all very easy to manage. I recommend you check out the books and tweak them to what works for you. I do have to watch my weight as in I can lose weight at a terrifying speed which seems common with Parkinson’s. (https://thefast800.com/books/)
We are on a limited budget and have two hungry teens to feed so I can’t always afford the organic or top-quality food I’d like but I do cook everything from scratch so that way I know what’s in it!
I take a good general multivitamin and extra vit D. Magnesium and vitamin B’s all help with stress and anxiety. Again there are lots of ideas about what does and doesn’t help. So much is trial and error, so what works for me might be crap for you!
This is the hardest for me to achieve. I have machines in my house to use, I have access to green spaces in the city and I even own a dog. BUT the fatigue and motivational parky demons play havoc with my intentions. The sad thing is I have been active all my life and love activity and yet…
When it does happen I have the cross trainer positioned next to a bed and wall so when I fall off (and yes, that does happen all too frequently) at least injury is minimal. Someone (thank you, lovely soul!) recently sent me the PD warrior stuff and apart from falling a few times, it is really good for balance. I used to do yoga and I know that I would absolutely benefit…so long as there is someone to help me up off the floor 😬
I think creativity is the key to most people’s happiness. But as a writer and artist, I would say that!
The frustrating thing is that Parkinson’s has a habit of stealing some of our creative abilities away. I can’t physically write very well now, drawing is variable and painting can be wild. Although I still persist!
I know my voice is not so strong and I have never been a singer but this must be the time. Even if it is wildly tone-deaf, my ability to continue being verbally understood is at stake and there is a chance I’ll have some fun. I have even started recording these letters for access and practice. (Although I’ll draw the line at singing them to you haha)
I read and try to keep educating myself, podcasts and the like really help. But I think even if your creativity and intellectualism amount to potting a plant, doodling or doing the crossword. Let’s keep those synapses firing.
It’s hard to determine whether we feel like shite because of a dopamine shortage or because we have an incurable disease. The swing from shit to shitter is exhausting.
My mental health benefits from being in nature and rituals. I always light candles and have flowers, add some incense and do deep breathing and I feel more able to face the day. It only takes a moment but it makes a huge difference. On the days I can physically sit at my desk I pop on classical music, light a candle and put myself in the zone for work.
I find on my really shit days/weeks I rely on my family. They never fail to make me laugh and the needs of a neurotic rescue border collie help pull me out of the fug.
Possibly one of the major reasons I need to consider taking medication is for my working life. There are increasingly more days where I struggle to sit at my desk. Thankfully I have had the luxury of adapting my life and can work from bed and even when I can’t type, I shout at my computer. It types along with getting 90% of what I said wrong. (it’s the Scottish accent I think) But it does allow me to continue working.
I have had to allow myself a lot more time to get dressed, shower and poke my eye out with mascara. Our rented flat has a bath with a shower over and that makes for a potential death trap daily…but as with all things Parkinson’s taking my time means I don’t break myself.
Time is so much the key when doing anything. I want to rush through tasks because I know I will be very tired or unable to carry on past a certain point BUT rushing leads to certain death. Or at the very least injury, deeper exhaustion and frustration because our bodies usually start to cease up and resist. When I’m pressured I have a tendency to freeze which is fun when crossing roads. I used to be a horrible jaywalker but now I am a-wait-for-the-lights gal. It’s funny even when someone with me nips over the road before the lights I find my body starts getting stuck. Crazy stuff is parky.
The other area I have totally revised is clothing. I now wear very soft, seam-free fabrics. (It’s an excuse to raid eBay for secondhand cheap cashmere 😅) I try to avoid buttons, zips and other fiddly bits, not because I can’t manage but because it takes such a huge amount of energy to do them up, I have decided to bypass them completely!
I have transitioned my beautiful glasses to tumblers and even to plastic due to so many breakages. It is the Parkinson’s…not the wine consumption…ahem.
I am restricted as to the changes I can make in my rented home but we did declutter so I can move around more freely. The tendency to bash and bounce off walls now just leads to a few bruises rather than stuff falling and breaking. The mental health benefits of living in a less cluttered environment have also helped.
I have a stool in the kitchen so I can sit when I cook and a small step stool thing so I can reach higher items. Despite my endless nagging the kids, there is still debris left about the counters. It does make doing anything difficult. They don’t understand that even that extra effort to move stuff means I achieve less of the main task. The mental effort of sorting out dishes and then creating a meal is monumental. I’m a very creative cook so having to implement more planning has been tough.
Cleaning is always the area where I hurt myself. I have lost count over the years of the broken fingers, cuts and falls I have sustained through cleaning. It’s evil.
I use a stick occasionally, I would love an ultra-light-weight one with a small seat. But I can’t find anything that isn’t quite heavy or cumbersome. It is useful in the city and when I wear my lanyard I can gain a little bit of space. Because I look young(ish) and fit I don’t think people understand why I can turn quickly or move over with ease these both help the perception.
I recently started using the kinesiology tape for my dystonia and it has made a huge difference. Providing me with some respite, especially at night. Annoyingly it has spread into my left arm as well as my right but I am able to get some relief. In terms of exercise and walking it helps keep my foot and leg straight causing less strain on my hips and knees.
I am a fan of using Reiki and other modalities to support. I am a trained massage practitioner and use some of the techniques on myself to ease discomfort.
I wonder if I could put together a visual booklet and share it with folk…(let me know!)
Do whatever it takes to find the support you need. I might just be following great folk on social media.
It might be a class or support group.
It might be looking forward to a glass of red at the end of the day.
It might be friends, family, pets or your hairdresser.
Do whatever you can to suss out ‘your’ people because whilst most of the time we manage, there are always those moments when we need a hug, a shoulder to cry on or someone to help us up off the floor at 3 am.
P.S. I missed out on heat or cold. Heat works for me. This hot summer has meant less pain and a ton more motivation. Just goes to show I need that vineyard in Italy…