Being diagnosed with MND can be traumatic. I knew that from experience.
What should you do?
Should you stop living normally?
Be curved in with the highest peak of depression?
No. Don’t be.
There are still ways for you to live just like everybody else — maintaining your sanity and live life to the fullest.
MND might be a complex condition and requires a wide range of support from a variety of health and social care professionals BUT you can still have the control you inherently got.
In my experience, I had a huge amount to think about things. I felt overwhelmed with was happening. Learning to know the problem helps you to understand more.
And you what? The problem with MND is that it is always moving on while you play catch up. These circumstances may caught you in a crossroads if not handled well.
What approach should be done? Should this be only applicable to individual circumstances?
Approaching this condition with more knowledge and confidence is a good first step.
For the tips, here you go:
- Purchase an equipment with proper assessment from the relevant professional. In short, don’t rush into buying the equipment for MND. What I do is to have an expert advice from occupational therapist or speech and language therapist. They’ll provide you with the required information as well as some recommendation on what, where and other considerations enclose to the equipment.
- Don’t rush decisions especially when these will affect your financial capability. This is a practical advice, though. If your finances can be compromised, then think again. Plan it out, consider the PROs and CONs. What I did is that I seek an advice from an independent financial advice and a benefits officer. It’s the wise thing to do.
- Consider the help advice about your future needs from an occupational therapist. Home adaptations as early as now is something to take into account, too.
- Ensure that the major equipment will have a continuous benefits for your present and future needs. Mobility aids is something to think of as this will affect your future needs. I recommend that an assessment from an occupational therapist should be sought after.
- Ever thought about social services? Then this is next tip: social services can provide a Community Care Assessment for yourself and a Care’s Assessment for your main care. This will help in identifying the needs, planning for emergencies and helping in the social care assistance in total.
- Don’t forget to give a lot of detail describing your worst day, not your best. This will ascertain the appropriate level of support to be given. I suggest you record your progress to keep track if there’s some changes or not. Providing the full picture of the care needs required can save you a lot of hassle.
- Log your queries about your health. Why? This helped me to not miss anything out. If you’re tired or overwhelming, the written notes can be helpful.
There are lots of other tips I want to share but then I want to hear what are your thoughts about the abovementioned information.