MSA Instruction Manual

By Amy Davis

When my husband was diagnosed with MSA-P in 2017 and after the shock of what we would be dealing with, I immediately wished for an MSA instruction manual. Through all the numerous doctors’ appointments, nothing prepared me for the frightening symptoms my husband would experience, and I would manage as his caregiver. Although his health professionals have been informed and compassionate, we were never given details on how to deal with his symptoms at home – the focus was on diagnosis and pharmaceutical treatment. We have learned by trial and error, scrambling for advice and solutions. We filled prescriptions and followed the regimen but that did not prepare us for dealing with the difficult adjustments at home of handling medical issues, hygiene, and daily care.

We spent a full year stressed out, sleep deprived, and full of anguish – just getting by each day.  My career as a commercial construction project manager involves checklists and problem solving, but an MSA diagnosis doesn’t come with a checklist or solutions. I wish I knew then what I know now, which is why I am sharing my experience and suggestions for those who are also managing MSA.

Here is what I recommend, based on what we have experienced so far:

1. Adult disposable underwear.  Tranquility Brand is better than common brands and can be purchased online or in medical supply stores.
2. Condom catheters. These are non-invasive and a game-changer. This eliminates getting up 3-4 times a night to use the bathroom and dealing with severe orthostatic hypotension, which can strike on the way there.
3. Cough assist machine. This helps with saliva build up in the throat and then struggling to expel it.
4. Egg white protein powder. One scoop daily in a milkshake will help with OH, even with prescribed low blood pressure medication. This substantially minimized the severity and frequency of his OH episodes.
5. Body Builder/weight gain protein powder. Given daily, this will slow down weight loss.
6. Powder “Liquid IV” packets. This helps avoid a trip to the hospital for dehydration.
7. Robo Cushion. This cushion prevents pressure sores from prolonged sitting. It’s expensive but worth it.
8. Lidocaine patches and a massage gun. This helps relieve muscle pain.
9. One-way valve straws. These help with taking in fluids if they have trouble with swallowing.
10. Pedialyte. Less than half a cup will help revive them quickly after fainting from OH
11. Angled spoons & forks.
12. Compression socks. Medical grade is best.
13. Gait belt.
14. Flushable wipes. The brand “Dude Wipes XL” is superior to others and won’t fall apart.
15. Cervical pillow.
16. Hand-held shower nozzle.
17. Wall mounted shampoo/conditioner dispensers with a lever for dispensing.
18. Shorts/pants with snaps, Velcro, or elastic waist bands. I highly recommend no buttons.

While there are many other helpful tips, these are what I wish I had known early on. We are still learning as he goes through this disease, but I hope these suggestions help to provide both you and your loved one a little more peace and rest. We wish you the best.

Please note that the products listed above are just for reference and/or personal preference of the author and is not an MSA Coalition sponsored product. There are many different options available out there that may be preferred by patients for any reason. Consult your healthcare provider with any questions or product recommendations that are best for you.