Wisdom of Life

FAQs

1. Why has no-one heard of MSA?

Neurologists have only recently begun to understand MSA and have discovered that it is not as rare as they once thought. The information learnt about MSA takes time to filter through to other professionals. Therefore, do not be alarmed if professionals that you meet have not heard of MSA. They can become experts by caring for you.

Be prepared to cope with questions about MSA by:

  • Having a standard answer ready eg ‘it’s like Parkinson’s disease but I have extra problems such as low blood pressure’
  • Having the FFFoundation brochure to show your family and friends
 
2. How is MSA different from Parkinson’s disease?

Many people with MSA may have received an initial diagnosis of Parkinson’s disease (PD) because both MSA and PD cause stiffness and slowness in the early stages.

 
3. Will my children get infected with MSA

There is currently no evidence that MSA is an hereditary condition.

 
4. What about Dementia? Is this part of MSA?

No, dementia is not a symptom of MSA. However, some people may find that their thinking, memory and ability to respond may become slower.

 
5. What sort of diet should I be on?

There is no special diet recommended for MSA, although eating a balanced diet with fibre, protein, fresh fruit and vegetables is important. If you have swallowing difficulties a dietician will advise on the best type of food and drinks for you.

 
6. I am worried about my partner having to look after me

At some point you may need someone to help look after your everyday needs.

Professionals within the health and social care systems, as well as domestic assistants, can help your partner to look after you.

 
7. I’m worried about the financial implications of having MSA

Having MSA may mean that you will have to stop working sooner than you anticipated – in some cases, maybe before you can claim your pension.

We at Funmilayo Fashina Foundation try to support in the little ways that we can.

 
8. What about the future?

Many of the ideas and plans you had for your future will change once you have been diagnosed with MSA.

People adjust to this change in different ways.

There is no one plan to help you cope but there are many people out there who can offer help and support, not least of these is the FFFoundation.

Thinking ahead and talking things through with your family can help.

 
9. Why has palliative care been mentioned?

Palliative care is about maintaining and maximising a person’s quality of life.

It is the medical specialty focused on relief of the pain, stress and other debilitating symptoms of serious illness.

It is not the same as hospice care as it may be provided at any time during a person’s illness from the time of diagnosis onwards.

Palliative care teams include specialist nurses, doctors and hospices.

They may also be able to offer individualised respite care.