- I, nor the doctors, have a crystal ball. Who knows where you’ll be in 6-12 months? Progress may be quick and substantial or it may be slow and the rate of improvement not ‘significant.’ Note the word ‘plateau’ does NOT relate to improvement potential but is a health system cost saving justification. You NEVER stop improving after stroke.
- You, and your loved-one, will never be the same after this life altering event, but that does not necessarily mean worse. Even if substantial improvement is not enjoyed by the patient patients can live and do live happily with purpose – Kati Van De Hoeven, Christine Waddell, Richard Ford, Besth Sinfeld, Clodagh Dunlop, Mia Austin, Michelle Wheatley …. You will all adapt to your ‘new-normals. In time.
- Read up about different levels of consciousness – Comatose/Vegetative (20-40% are misdiagnosed as it, watch my TEDx: https://youtu.be/SptlyNYjtIU ) /Unconscious (Aware of self & environment but unable to give any communication signal)/minimally conscious/fully conscious. Be aware patients can pass from coma to unconscious or fully conscious very quickly (or slowly).
- Can the patient can move their eyelids (Blink), roll their eyes up and down or move a digit or limb to signal a yes/no response to your simple yes/no question?
- Download the speakeasy ICU apps by Lingraphica to ask the patient questions (If they are conscious) so you quickly gain a picture of their needs or unmet needs during your visit. Also check out their Oral Motor, Swallow and tongue apps.
- If the patient enjoys any voluntary movement, then remember my family was told that you NEVER lose that neural connection! So something to positive to build upon.
- The patient, with your help and support will need to try to work damn hard in hospital and especially hard in rehabilitation, if the patient is offered it.
- Some patients enjoy an AMAZING levels and speeds of improvement, others do not. We, like all brainstem injuries and people are all different. We have different goals, different motivations. Some of us maybe suffering with depression, executive dysfunction, or neurological fatigue (a huge issue btw) and they may also be reacting to their drug side effects.
- You want to be asking ICU (and the stroke unit) what ‘significant’ improvements need to be demonstrated by the patient inorder to be offered intensive rehabilitation. Read up about Dr Robert Teasel’s stroke rehabilitation research – ie, repetitive, frequent and intensive actions which you can help the patient practice 50 times per day!
10. Life Support weaning, trachi weaning are the first priority
11. Does the patient require gastric feeding? Ie PEG
12. Try to set small goals with the patient (they really need to drive this!) NB.you can’t eat an elephant in one go.
13. Talk regularly to your neurologist, psychologist, speech therapist SALT, OT and neuro physiotherapist.
14. Keep a diary and video diary to track and log progress improvements for evidence with neurologist and nurses. (On iphone) Patients are more likely to ‘perform’ for you as opposed to clinicians (Stressful)Set up a visitors timetable. But when family & friends can’t visit, why not consider downloading the virtual communication app – FamilyPlug?. A mobile communication app dedicated to people in unconscious or semi-conscious states. The App automatically delivers and plays audio and video messages at specific hours of the day (you pre-set your slots) You can have regular direct communication, give the patient stimulation and also prevent noises during resting hours. The App allows patients to constantly hear and feel the support of their friends and family.
15. Invest in a docking station and use DVDs? And audio books? Check the hospital has wifi and look to boosting that with a portable modem.
16. Try to communicate regularly with your relative.
17. Does the patient need a regular psychologist for his emotional needs? Be aware of the condition ‘Emotional Lability’ or the ‘Pseudobulbar Affect.’
18. Is the patient bored and unstimulated?
19. Is the patient sleeping at night? Sleeping pills?
20. People say my book helps a great deal practically. So read Running Free on kindle/paperback it’s very practical
21. Read the brain that changes itself Norman Doidge
22. Be aware of the risks of silent aspiration and pneumonia.
23. Do self-management exercises with your patient and learn exercises from your therapists. you need to be supporting the work of the patient to make their work more intensive, frequent and repetitive. Ask your therapists for extra physical exercises ‘homework’ so you can do with your patient during visits.
24. Massage the patients limbs and make sure the patient is turned enough with medical staff/nurses.
25. Stroke will likely make the patient more grumpy and irritable than normal (it’s the injured brain) but don’t take it personally, you are his lifeline.
26. Read up about neuroplasticity and the effects of brain injury on behaviour.Also read up on dysathria and dysphagia dry chilled teaspoons, straws and ping pong balls, PEG removal and minimising pneumonia risks. Also check for vision issues like Nystagmus and see an optometrist. Seek/ask for support if you need it.
27. What community services are available to you post hospital? This could be a very long slog but remain optimistic. There are possibilities though they can be very positive but not great too. There is hope with a loving proactive family, a motivated patient and early intensive (and good) clinical therapy.
28. The patient is a human with a heart and feelings. Communication is a basic human right. The patient will be feeling highly anxious, fearful, lonely and frightened and possibly be in pain after prolonged periods of not moving. Communication, either verbally or through body signals or from Augmentative and alternative communication (AAC) products (like eye gaze or eye tracking – Tobii dynavox) and even portable mind reading technologies, are there to help if necessary. Be aware and do some Googling! Gently remind the nursing staff, always explain stuff to him before a medical procedure, warn about hallucinations too. Basically, nursing staff should be treating the patient like they themselves would want to be treated. Find out what matters to the patient (and you) The patient is not just a piece of meat that requires physical life saving support! He/she has feelings too and is doubtless scared rigid and in a highly anxious state.
29. Doctors are pretty unanimously negative until after day 3 (or much longer) but they, like me, are not God. They have no crystal ball either. I am not a one-off there are others who have improved almost fully.There is almost no published evidence-based research on Locked in Syndrome recovery (Note: improvement is the watch word!). This is my 7 years of experiential and anecdotal experience from the hundreds and hundreds of global cases of early LIS I have worked with. I am therefore an expert on early LIS I think! NOTE: All strokes are different as are INDIVIDUALS! The rate of improvement is highly variable from Tony Nichlinson to me, and everywhere else in between.
30. Hope is a waking dream Aristotle
33. My Twitter accounts: @KateAllatt @FightingStrokes
34. Visit my Youtube account
35. We are told ‘if you don’t use it you lose it’. Well try telling that Ms Christine Waddell. Wheelchair, headrest, nil by mouth for 17.5 years, two years after I inspired her to believe she could improve, she moves, she sits unsupported, she now eats 3 x meals per day, regularly exercises and has had her PEG removed after 19 years! Her consultant, who discharged her some 18 years earlier, is seeing musle, nerve and movement improvements he struggles to explain. She is a real beacon of HOPE. She BELIEVED. She works damn hard and is highly motivated. Simply my heroine.