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Living with NMOSD is a journey encompassing many obstacles on the way. This section tells you what to expect when meeting a therapist and how you can prepare to make the best use of your time with them.
Things to think about first
• How am I feeling about having NMOSD?
• What (if anything) is bothering me at the moment?
• What would help me or other people manage better?
• Do I have any problems with my memory or thinking?
• What positive changes have happened in my life since having NMOSD?
• Would some extra emotional support be helpful and if so, where from?
The NMOSD Specialist Nurse
• To use us as a point of contact when you are worried or concerned about any new symptoms
• Information or advice regarding medication
• Support of for relapse concerns
• Advice and liaison with local neurology services regarding relapse management
• An assessment of your symptoms
• Referral to local therapists, continence adviser
• Information regarding NMOSD and medications to increase your understanding
Provide advice on nutrition and health. Dietitians also advise about food related problems. For people with NMOSD, advice may be given for weight management (weight gain or loss) or for optimising nutritional status.
• Assessment and quantification of your level of vision
• Relating this information to your visual needs and requirements
• Transferring this information to team members
• Bilateral visual loss will impact on
• Social interaction
• Discussion around any physical problems you have identified
• examples can include reduced balance, limb weakness, stiffness, spasms Identifying any physical issues that have not been addressed up to now
• Information about any Physiotherapy input in the past
• Information about any previous discomfort of injury
• Discussion around current levels of activity / exercise/ physical care programmes
• Referral to local services for further input can be made
• Referrals or provision of some aids such as walking sticks, hand supports, wheelchairs can be made
The Occupational Therapist
• Discussion about your everyday activities and roles
• Questions about what you have stopped doing or never started
• Questions about your home environment and support
• Discussion about any previous OT input
• Discussion about impact of symptoms
Analyzing your lifestyle, activities and roles to identify areas of difficulty, and working with you to develop skills and learn ways in which activities can be successfully carried out.
Adapting the activity itself, for example, by advising on specialist equipment to assist in carrying it out or learning a new technique.
The Clinical Psychologist
• Supports the emotional adjustment to having NMOSD or being close to someone with NMOSD.
• Is part of the routine assessment – not a suggestion that you are not coping properly.
• Is different from a psychiatrist in that we don’t diagnose mental health problems or prescribe medication.
• We look at emotional problems in the context of the whole of your life.
• We help you identify what works well for you…or less well.
• Will ask what emotional support you have in your lives and whether other support would be useful
Having NMOSD has many different symptoms that all interact with each other, the therapists can help and guide you to make daily life a little easier, but you must take control.