March 16, 2020 at 8:23 pm #14853
Social distancing? For many who live with ALS, the COVID19 guidelines to “stay home” and “work from home” are what we already do; e-v-e-r-y-d-a-y! I always look forward getting out and about; going to several group meetings, trips to the grocery store and dining out at a restaurant on the weekend. Now, even those options have disappeared!
So, what to do to fill in the time and avoid going bonkers? Here are some of my personal tips for staying sane and productive, while “sheltering in place.”
- Read: Netflix and Hulu are great, but nothing gets your mind going like a good book! Check your local library’s website for their selection of online books. I enjoy reading biographies and memoirs. What do you enjoy reading? Do you have any recommendations for our members?
- Call Friends and Family (or catch up on emails): We often use the excuse of “being too busy” to keep in touch with people. (oops, I’m guilty of this too). Now, we have the newfound time to invest in our relationships. Due to my voice issues, I don’t spend much time on the phone…but I always have emails to answer! Skype, Facetime and Zoom are also great ways to connect with others online.
- Get Outside When Possible: I realize this isn’t an option for everyone, but try to spend time outside if you can. If you can’t spend time in the backyard, even just a few minutes by an open window or door can be refreshing. Here are a few more ideas.
- Watch Good Movies or Tour a Museum (virtually): I enjoy watching detective series on Netflix and have some recommendations, if you are interested. And here’s a link to a listing of world-wide museums that offer online/virtual tours. I’m looking forward to “touring” the Van Gogh Museum in Amsterdam.
- Listen to Music and Podcasts: This is another simple and stimulating activity. Educational, entertaining or storytelling – – there are so many choices on Spotify or YouTube (don’t forget TED Talks!) I also have recommendations if you need ideas.
- One more… (you know me!) Take several exercise breaks! To help you get started, here are several of my chair exercise videos: “Move Along with Me.”
It’s an uneasy time, but we’ll get through it together! What additional tips do you have to help get through social distancing and self-isolation?
March 17, 2020 at 5:02 pm #14868NinaParticipant
I am trying to keep up with my journaling since this is a historic moment and worth recording. I am also finally getting around to updating my list of passwords. I will get rid of all the scratch outs and updates. And of course I’m playing Words With Friends. There are so many great computer games these days. Try Two Dots!
March 17, 2020 at 7:42 pm #14872
Updating passwords! What a great suggestion Nina!
March 26, 2020 at 5:30 pm #14969Diana BellandParticipant
What great tips, Dagmar!
Thanks for the link to the listing of museums offering virtual tours. I’ve started “touring” the Van Gogh Museum. It’s excellent. You can “stand” in the gallery and enjoy each painting in detail, free from the ubiquitous “selfie” takers!
As for reading, I love science and biography. Recently, I finished The Disordered Mind by Eric Kandel, a neuroscientist at Columbia University. It’s a fascinating read, covering what we know about the biological origins/causes of various types of mental disorders as well as new treatments which are being developed. There’s a chapter on Parkinson’s and Huntington’s, and Kandel even touches briefly on ALS, explaining how the misfolding of proteins causes the death of motor neurons.
In case anyone might be thinking, “the world doesn’t need another book on dinosaurs,” I’m here to say you’re wrong! One of my daughters recently gave me The Rise and Fall of the Dinosaurs: a New History of a Lost World. Written in the first person by a paleontologist, it reads like a “who-dun-it” detective story, a real page turner that’s hard to put down.
For art lovers, I recommend Walter Isaacson’s brilliant and highly engaging Leonardo da Vinci. Filled with glossy photographs of Leonardo’s paintings, drawings and invention sketches, the book illuminates da Vinci’s huge accomplishments as well as his failures.
Today, I followed your advice to get outside—for the first time in nearly three weeks! I took my new Air Hawk electric wheel chair out for a spin on my driveway. My husband and I decided to “walk” down the driveway to the mailbox. Then, as he was getting the mail, I felt a sudden urge to “pull out the throttle,” so to speak, and see what she could do! I turned and put the chair in high gear and raced back up the driveway. It felt so good to have such freedom of movement after months of enduring the slow weakening of my legs. (I used to be a runner.) I suppose everyone who “drives” a power chair or a scooter has found it hard to resist that urge to go all out. All of the parks and nature centers in my area are closed now, but I am so looking forward to being able to do some paved trails on my Air Hawk when restrictions have been lifted, and it’s safe to do so.
March 27, 2020 at 3:01 pm #14975
I have this wonderful image of you in high gear and racing back up the driveway! Did you hair blow in the wind??!! I don’t have a “driving machine” yet, but now I can definitely see an advantage. So far, our parks, walking paths, etc. are still open but everyone has to honor the 6′ rule. We actually live on 18 acres so we have our own park more or less.
Stay safe during this time of uncertainty.
March 27, 2020 at 4:19 pm #14978
HaHa…yes, Susan – – I had a fun mental image too of Diana “racing” down her driveway!
I can relate! Every time I go shopping with my husband (pre-COVID), at say a big store like Walmart and see an empty aisle ahead – – I have the urge to dial my mobility scooter up to “Rabbit” and let ‘er rip! (sometimes I do! – – and wonder if the folks watching the security cameras are laughing!).
Fresh air and sunshine is so rejuvenating. Good wishes to you both for continued creative adapting & laughing freely.
March 28, 2020 at 7:12 pm #14984
Today my husband and I went to a friend’s house and met up with some Pickleball friends that we have missed seeing in person. Janis has a huge parking pad outside her garage. We all brought out own chairs, wine, snacks etc. and sat dispersed at least 6 feet apart. It was so good to visit and see our friends in person. We plan to do it again regularly. It was wonderful!
March 28, 2020 at 7:41 pm #14985Diana BellandParticipant
How wonderful that you live on eighteen acres and can get out safely on these lovely spring days. I’m glad you and your husband were able to visit your friends—it sounds like you had a great time! Connecting with dear friends and enjoying a bit of humor together seems so vital now.
March 29, 2020 at 12:21 pm #14986John LopynskiParticipant
I was diagnosed with ALS in September of last year. Like many PALS I immediately started a structured diet and detox regimen. I did this so that I could then spend most of my time focusing on mind-body healing. I am a firm believer that the mind can heal the body and that meditation is the tool that will allow this to happen. I believe as many preach that if you believe that you are already healed that the mind will send signals to the body. This is a difficult practice and takes time. Much of this is getting your mind to focus on what you will feel like when healed. There are many meditations on this. I use the Space meditation from Joe Dispenza. I also have the Calm app.
I then determined this was not enough for me. I am Catholic and feel I needed a meditation that connected me more to God. I bought the app Hallow and use it every day. I tell my kids that I “cry with God every day”. For those that are Christian I suggest Hallow. There is a section on Saints and their prayers that will speak to you. The Intro itself is powerful.
I hope that this might help some of you especially during these difficult times and am interested in your experience.
March 29, 2020 at 6:02 pm #14990
John, thank you for suggesting meditation!
Learning how to, and practicing, calming the mind is so important during this challenging time. I also enjoy using the app “Calm,” also do the meditations from Jon Kabat-Zinn PhD. , founder of Mindfulness Meditation. (Google his name).
It’d be interested in finding out how many of our members besides John and me, use meditation to help them calm their mind & body. 🙂
March 29, 2020 at 10:13 pm #14998
I also use meditation, specifically the “Calm” app. I will investigate Mindfulness Meditation and also the Hallow app that John recommended. Thanks so much for these recommendations!
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