Table
| Approximate Timeline | Some families (hard earned) view of doctors | How some families are forced to react and cope. |
| Previous generation | Hushed reports of awful wrongs where pHD’s were mistreated by medics and others. | Caution when allowing pHD’s be judged by anyone in the “system”. |
| This generation. Year 5 . | Doctors can not see or measure symptoms and refuse to provide medical cert for work. | Person with HD gains bad reputation in work and home and gets little or no support. |
| Years 5-10 | Person with HD loses job, reputation and confidence in doctor. Patients must adapt without support. | |
| Years 5-10 | Stress of losing job magnifies symptoms until pHD learns to adapt. Rate of learning depends on support available. | |
| Year 10-12 | Doctor diagnoses pHD,usually following a fall or other avoidable drama, based on what family tell them. | pHD and carer think or say "No s**t Sherlock” as diagnosis is years late. Doctor surprised by reaction. |
| Year 10-12 | Doctors often wrong families by blaming them for failure to report when repeated reports failed. | Family contact or regain contact with lay group |
| Year 10-12 | Lay group advocates open doors to available services. | |
| Year 12+ | Doctor of little relevance and usually unavailable at this stage. | Families adapt to changed roles and income. |
| Final stages. | Doctors shine as they know how to care at this stage. | Families and pHD often burned out by now and need all the support they can get. |
| Or | Doctor refers pHD to those who collect data for industry when they should refer to practical supports. | pHD and families reduced to series of tick boxes Keen to co-operate for the sake of future generations. |
| Next generation | Doctors hopeful as science progresses. | Patients and families learn to keep doctor on side even if they do not agree with them. Compliance? |
| Families learn to avail of services. | ||
| Hope for the future | Patients and families take pride in their achievements despite the odds. Confident to join debate as equals. | Regulations improved to protect patients involved in drug trials. Advocates trained to empower families. All learn to protect themselves from rogue doctors. Services improved so they are needs based and timely. |
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