For pALS who were very active professionally, socially, or within their community before their illness, there is a high chance that they will start to withdraw. This is because they can no longer remain involved in the same way as before. However, it is perfectly possible to stay active and participate in outside the home activities. You will just have to approach it differently, both to what you do and when you do it. Think about your strengths and consider which tasks you would prefer to be involved in. You will naturally notice that performing these tasks will take a bit more time, especially once ALS progresses. Here are a few considerations you can make. Can you possibly be involved in meetings online? In what way does your computer need to be adjusted? Is it perhaps easier for you to communicate via phone, email, or SMS instead of always being physically present? When does your health allow you to do something, taking into account your care and rest moments?
A good example is Sandra Lesher Stuban (1956-2012). She was working as a nurse in the army when she was diagnosed with ALS at the age of 38. Although she was completely paralyzed and used a ventilator, she always led an active as the person in charge of her nursing unit. She wrote and sent the monthly e-newsletter to the 600 members, sent welcome emails to new members, and sent reminder emails for unpaid bills. She did all this work from home on her computer. Communications with colleagues and management was done via email.
Another example is Stephen Hawking (1942-2018). Hawking was diagnosed with ALS in 1963, aged just 21, and his doctors gave him only 2 years to live. Nevertheless, he continued studying at the Cambridge University and became a brilliant researcher and Professor. He is even considered one of the most brilliant scientists since Einstein. He has earned a dozen honorary doctorates during his career. Stephen Hawking has also written several scientific books, which are very accessible to the general public, such as “A Brief History of Time”.
Volunteering is a slightly more informal form of staying active. For example, you can go and help one or a few day(s), a week at an organisation that you care about. Volunteering can be done in many areas and in many ways. Do you have administrative or communication skills and would you like to support an organisation in this way? Do you prefer to work with animals? Would you like to become a buddy of an elderly or vulnerable person? See what is desirable and feasible for you and look for suitable volunteer work (e.g. via https://www.vlaanderen.be/werken/werk-zoeken/vrijwilligerswerk).
Staying sportily active
pALS, who used to be very active in sports, are experiencing more and more significant and annoying mobility problems over time. And when summer arrives, you really realize that the many things you always loved to do will now become very difficult, sometimes even almost impossible. You then realize that relaxation and leisure will no longer mean the same as before. Just going somewhere now requires a lot more effort and then you may wonder if this is it all worth to you. The question then arises whether you can now deal with your relaxation and leisure time in a different way, with more meaning, joy and fun expectations.
This problem is certainly one of the most important settings you will have to change as an athletic ALS patient. Because it is certainly possible and also necessary for your morale to accept your new life with ALS and learn to enjoy it in a different way. Perhaps you used to play golf in your spare time, train for a marathon, play tennis… Mentally, you must now slowly make the switch from the active sports participant to the involved sports participant who is mentally committed to his favourite sport. From now on, you will have to shift your sports interest from the physical to the mental. You certainly shouldn’t be frustrated and think that you are losing talent and ability this way. You must now look ahead positively and try things out. Think about how best to approach this and consider it as a new challenge.
People who were active in sports before their diagnosis may encounter more difficulties in continuing these activities throughout the evolution of ALS.
Below are some ideas to get you started:
- Invite friends over to your house to watch your favourite sports team and favourite sports games on TV together. Being with friends together brings so much more atmosphere.
- Ask your friends if they can take you to sports games and sporting events. All major sports stadiums of sports such as basketball, soccer, hockey, tennis are very accessible to wheelchair users.
- Improvise with your favourite sport and create your own team. Within various sports, these kinds of games exist online (fantasy leagues). For example, one can participate in the fantasy pro league, fantasy premier league, F1 fantasy, Cycling Manager Classics and the tour, etc. The prediction game consists of putting together your own team with your favourite players and giving your team a unique name. To participate, you do have to pay a small fee. All participants play for the most points according to their own team’s players who achieve the best results in the official matches. Sometimes there are even nice prizes to be won.
- Look forward to major sporting events that are coming up, such as the Olympic Games. Build a somewhat festive moment around this and invite others to watch with you, or ask others to take you to watch those events somewhere on a big screen.