NMO Focus Group Sat 22 Oct 2011

22 Oct 2011 session
Living with Neuromyelitis Optica

Thank you to all those who attended this group, Following lunch and general discussion between all we split into two groups.

Group 1 people with NMO
NMO focus group
Themes
• Nice to feel part of a community as isolation is a major problem
• Fear of relapse is constantly in back of your mind, feel like you’re just waiting for relapse.
• Difficult to tell if small symptoms are NMO or something totally different
• Sometimes it’s difficult to tell what’s worse out of the symptoms of NMO or the side effects of the drugs
• Issue of negotiating with Neurologist over drugs, trying to lower dosage without causing relapse
• Strong need to keep or regain independence
• Uncertainty is the hardest issue to deal with
• Frustration is a major problem, you know what you want to do but your body can’t do it
• Possible cognitive fog with Azathioprine
• Mobility problems with shopping, due to layout of shops and staff attitude in clothes shops
• Difficult to accommodate the changes due to NMO without letting it rule your life
• There is a strong need to detach yourself from your condition. Don’t see yourself as having an illness, as in your mind you’re not ill.
• Stress caused by family members/friends being insensitive/ignorant
• Trying to find the balance between keeping stress levels low for fear of relapse and not going out/having a social life at all
• A positive benefit of NMO is that you’re more in tune with your body
• You need to shift the focus away from yourself as too much focus on yourself can make you feel depressed
• Problems with body confidence- weight gain and appetite increase with particular problems with prednisolone
• Vicious cycle of comfort eating and feeling depressed
• Value of blue disabled badge to maintain normal life- If you park too far away from shops then too tired to shop/drive home
• Menstrual cycle makes symptoms worse
• Possible link between urine tract infections and symptoms getting worse
• Issue of guilt and being a burden
• Issue of being labelled blind- stigma of diagnosis vs. getting the help you need.
• Feel like you have to be brave all the time and can’t let your guard down- would be nice to socialise with people with NMO so you don’t have to worry about this.

Group 2 Family members of people with NMO

Question how does NMO affect you?
Worries, fears and concerns  of getting diagnosis.
Not being believed
Assumption made that they will be the carers caused great frustrations

Experience of NMO
Hopelessness change of role
Helplessness Lack of support for family members
Loss of roles, no longer friend, lover, partner now carer
Anger at NMO and lack of control
Everything is a battle

Variability of condition
Tiring

Roles within family
NMO engulfs everything.
Loss of Independence

Time and Planning
Everything is so slow,
Needs organisation
Everything has to be planned
Do jobs as its quicker and easier

Social Effects on carers
This group didn’t see this as a problem however  2 groups do everything together
They do very little for themselves as life evolves around the person with NMO.
Fear of leaving them alone just in case? Something happens eg fall.
Loss of social outlets due to change of role
Feeling guilty if partner cant participate

Financial Issues
Expensive
Loss of earnings
Where to go for financial support
Anything positive
Diagnosis
Good relationship prior to diagnosis

Support
TM society
Other family members

Future Concerns
They have to stay healthy
Planning for  disability
Ideas to bring forwards

Acknowledgement of how partner feels
Advice about how to deal with new role as difficult to become a carer by “accident”
NMO Samaritan helpline – somebody to help fight
NMO Alert card explaining NMO, what to do, medications, contact details

Thank-you to everybody for their contribution to the meeting,  we have many ideas on how to take the NMO service forward

Kerry Mutch, Jon Revis NMO Nurse Specialists
Dr Julia Boot, Clinical psychologist;  Abi Methley Clinical assistant psychologist