Hospitals are difficult places for MSA patients. It seems counterintuitive, but even highly trained medical staff in a top facility will have little to no experience with Multiple System Atrophy. And there you are … with your loved one who has an acute medical problem or even a life-threatening emergency.
The good news is that you can help navigate the situation … if you are prepared.
The UK-based MSA Trust has a very useful factsheet related to hospital visits. You can find that here:
One of the most important points brought up in that resource is that you should be ready to provide information about the disease as well as a list of all current medications.
Keep the medication list (including dosage and times) up to date.
- Add a brief description of the disease to this document. Diagnosis: Multiple System Atrophy – Parkinsonism– Atypical Parkinson’s Disease — movement and autonomic nervous system deterioration
- Have a concise description of MSA and critical issues that MSA patients face. Hospital staff will not likely read a lengthy article or handout, nor will they take the time to do research, but they will scan an overview. See “To My MD” as an example.
- Keep multiple copies of both of these documents at the ready.
- Give copies of both documents to EMTs, ER staff and admissions office.
- Have extra copies of the disease description in the hospital room for hospitalists, physical therapists, occupational therapists, etc.
- Take equipment – such as specialized walkers, bi-pap or c-pap machines – with you. The hospital may have something similar, but not the right equipment.
- Ask for a consultation with a neurologist for all ER visits or hospital stays. Even if the situation doesn’t seem neurological, MSA is likely playing a role.
A word about emergency medical services
It is a good idea to also be prepared for ambulance or paramedic services. Your prescription list and short description of the disease will be incredibly useful here as well.
Don’t be reticent to call for an ambulance for transport if you feel they need to get to the hospital. Your loved one is likely to be weak and this transportation option will be much easier for them. And, arriving by ambulance will ensure that they see a doctor sooner.
Sample Letter to Your Doctor
Download and edit this letter to meet your specific needs. It’s a good way to get your thoughts and instructions in one place prior to meeting with your doctor.
Contributed by Elaine Douglas, Caregiver Representative, The MSA Coalition Board of Directors
Thank you so much for this info. After several hospital visits for my brother, I always had info printed on MSA for medical staff Most of the time they wouldn’t read it and were not familiar with this rare disease. I will now print out this condensed explanation and have it on hand, along with all of the other info you have provided. Hospitalization is inevitable with this disease and the more info you can provide, the better understanding medical staff will have especially at this time of Covid.