Notes from the Neuro Café on 20th January 2021.
It may be a waiting game to obtain the vaccine, it depends which category you fall in to.
Suggestion: if you have had a letter from your hospital or clinician saying you are in a vulnerable group, pass it on to your GP and ask them if they were aware of this.
There are different categories. Our group members thought they might be in groups 4, 5 or 6.
Once you have the vaccine, you should still follow the guidelines regarding social distancing and wearing masks. The first vaccine might give you 70% immunity and 14 days after the second vaccine you should have immunity.
Do be aware that there is no guarantee the vaccine will work for everyone.
Share tips and encouragement
The group would like to share some tips and experiences of their rehab, hoping they could be of use to others. Someone who has ‘been there’ and ’done that’ could be valuable in sharing good ideas, encouragement and positivity. It is important to keep motivated and engaged.
Quality of care
It was noted that care can be patchy; some people felt they had not received enough pointers on how and when to keep moving immediately after the acute injury phase and also afterwards.
One member changed wards and went from getting 1-hour arm massages with the hope of keeping the wrist supple and normal in the first ward, to nothing at the next. Also changing to a hospital closer to home for convenience was good in one respect but the quality of care in that hospital was not as high as the first one. In one hospital, physios worked hard to get a group member to stand up - however, later on, in a different hospital there was not much help with that.
It is possible to slip through the cracks when moving from acute to community care and there may be limitations to how much care you can get. Sometimes it seems nursing staff are busier filling in paperwork than caring, but Annys pointed out there is a culture change going on to move away from these less helpful aspects. Clinicians would rather treat patients than do paperwork. Sometimes it is difficult to translate ideas and innovations to the real world.
People felt it would be useful to be given advice immediately after their injury, for example, what to do to avoid a tight arm in the future.
Annys remarked that massage might be helpful for touch and sensation and to stimulate awareness but not actually to promote movement; there may be no direct effect on strength or range. To improve movement and function you need to actually move.
Studies have shown that the brain connections do fire even when we imagine doing movements or exercises, which can help recovery. You can get someone to move your affected limb to do the movement if you cannot make it move. This visualisation idea had been pointed out to a group member by a yoga instructor who was teaching yoga after stroke. The group felt it was good to imagine you were exercising, since you felt you were actually doing something positive - even if you could not move.
You may be told you are unfit to drive; Disability Action suggested to one member that they get an assessment; they did this, and they were deemed fit to drive, with some adaptations to the car. You may need to consider a lighter car.
Motability scheme was suggested. Also, contact your local council who may provide mobility scooters. There are different speed limits for scooters in UK (8mph) and the Continent (16mph).
Norwegian cycle was mentioned, which is pedal-powered, for use in the city.
London taxis have ramps for wheelchairs and some swing seats. You can book a ‘disability friendly’ Uber (Uber ACCESS). Some cars have a winch that will pull a wheelchair into the vehicle. Some local hospitals have VW vans which allow you to wheel inside.
The importance of going outside even for a few moments, each day, was noted. This can be challenging if you need someone to help you out.
A trip to the supermarket can be good motivation; why not give yourself a treat, such as small bar of chocolate to tempt you out? Divide the shopping between two shops to make yourself go further. Carrying goods can be a problem; a backpack may help.
Count the number of steps you do daily (consider using the simple health app that comes with smart phones for this) and try to do a little more tomorrow than today.
The group will be comparing notes on going outside and step counts at the next meeting.
Finally… if you are thinking about planting the seeds as suggested in the last session, it was noted you should not forget to buy pots which have holes for drainage !