If IBM has made it impossible for you to work, you may qualify for Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI). IBM is listed under Section 11.15 (Disorders of the Peripheral Nervous System) in the SSA Blue Book.
When to apply:
Apply as soon as you can no longer perform "substantial gainful activity" (earning more than $1,620/month in 2024). Don't wait until you've exhausted all savings — the application process typically takes 3-6 months.
What you need:
• Detailed medical records documenting your diagnosis and progression
• The IBM Functional Rating Scale (downloadable from myositis.org)
• Letters from your neurologist and other specialists
• Documentation of how IBM limits your daily activities
• Employment history and education records
Tips for a successful claim:
• Be specific about your limitations — don't minimize them
• The IBM Functional Rating Scale is your best tool — it quantifies exactly what you can and cannot do
• Consider hiring a disability attorney — they work on contingency (no upfront cost)
• Apply early — there's a 5-month waiting period before benefits begin
If denied (about 60% of initial applications are), appeal immediately. Many denials are overturned on appeal.
For financial assistance with medical equipment, check TMA's patient assistance programs and the MDA's equipment grant program.
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