Over the years, the PatientsLikeMe ALS community has shared what products help them manage their new normal with ALS. From eye-gaze devices to elevated toilet seats and alternating pressure mattresses, we compiled a list of some of the products that you, the experts, are talking about in the forum. Check it out:
When it gets difficult to turn over, members mentioned:
- Drive Medical alternating pressure mattress
- Check out Amazon for a variety of inexpensive alternating pressure mattress pads and pumps
To manage muscle weakness, Kate shared a list of helpful products:
- For writing: PenAgain – alternative style pen, eliminates the need for a firm thumb-forefinger grip to write. Available online and in office supply stores.
- Magnetic closure shirts. The shirts have buttons sewn on the front, but the closure is secured with small magnets behind the buttons, including the cuffs.
- Devices that “cinch” your shoelaces (regular or elastic) closed so you don’t have to tie your shoes each time. An example is “lock laces.”
- The “Toilevator” is a very small pedestal that goes under the entire toilet and lifts the entire thing up about 3 ½ inches, works with a bidet seat.
When transferring to and from the toilet gets tough, members mention:
What products help you? In the market for something specific? Head to the forum – the community might have a recommendation.
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- Filed Under: ALS, Openness
- Tags: ALS, ALS community, bidets, connecting patients, coping tips, eye gaze device, forum discussions, help, life with ALS, PALS, patient advice, patient tips
It’s the most wonderful time of the year. Or is it?
The holidays can be a time of merriment and joy marked by festive parties and family reunions. But they can also be quite challenging.
Despite the great cheer advertised everywhere you look, some people find themselves struggling with stress, anxiety, loneliness and/or depression. This phenomenon is sometimes called the “holiday blues.” Add to that things like fatigue, insomnia and seasonal affective disorder (SAD) – which affect many PatientsLikeMe members on a regular basis – and you have the recipe for a perfect holiday storm.
Here’s a look at how our patients are attempting to cope with the stresses of the season:
- “Seeing all the lights, the preparations, the shopping for the holidays makes me dread what is coming. I try to go to low-key places where there isn’t as much traffic and aren’t as many people. I try to play down the importance of everything so I don’t become so obsessed with choices and opinions. I take breaks. LOTS of breaks. I try to make sure I take them before I even become overwhelmed in the first place. And I try to find free things to replace some of the costs – either as presents or activities.” – Patient with major depressive disorder
- “Having family meet on a major holiday is enough to upset the emotional applecart so to speak. Try just to do an average job of cooking, it doesn’t have to be perfect. Take a break when you can…get involved in objective projects: carefully following a recipe or cooking something with your mind fully on it can help calm panic attacks. If you are doing your best, that will be the best you can do.” – Patient with Parkinson’s
- “It puts a lot of stress and pressure on me. I have three children who get a lil’ demanding, and then a husband who expects me to travel with three demanding children and then stay at relatives’ tiny houses, etc. The noise, the gossip, the fake hugs from relatives who really do not like me, it all honestly just ‘gets to me.’ But this year, I’m taking my power back by saying NO to the parts of the holidays in which I do not want to participate.” – Patient with bipolar I disorder
- “Sometimes I get depressed because I’m usually one of those people who have to get assistance to give their children gifts for the holidays. I also get depressed because I don’t look the way I want to (I am overweight) and do not want people to see me like that. So the gatherings can be nerve wracking for me. [But] I am learning to let go of the ‘shoulds.’ Not easy, but it can be done. If I am really not feeling up to something (I get exhausted really easily), then I allow myself to not go, or not run the thing like I used to, or only bring one thing instead of 3 or 4. Pacing myself has been a good thing to learn.” – Patient with fibromyalgia
Are you feeling signs of the “holiday blues”? Are the demands on your time and your pocketbook starting to overwhelm you? Before you pack up the car or welcome any house guests, check out these great tips from the Mayo Clinic for getting through the holidays with as much joy as possible.
- Filed Under: ALS, Chronic Fatigue Syndrome/ME, Conditions, Epilepsy, Fibromyalgia, HIV/AIDS, Mood Conditions, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Rare Diseases
- Tags: anxiety, Christmas stress, coping tips, fatigue, holiday blues, holiday stress, insomnia, loneliness, Seasonal Affective Disorder