Some Challenges Patients Face
Periodic paralysis is often an "invisible disease". Patients are constantly forced to expend their limited energy to explain their symptoms, advocate for themselves and fight for services. Periodic paralysis is unpredictable. Day to day, hour to hour patients symptoms fluctuate, threatening the stability of family relationships, education and employment.
Difficulties establishing a diagnosis interfere with a patient's ability to obtain adequate medical care, insurance coverage, health care support and disability services. Lack of understanding of the disease and misinterpretation of symptoms often lead to misdiagnosis. Progression of muscle weakness may occur if diagnosis is delayed and treatment and support are not available.
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The first UK PPI/HKPP meeting in Manchester, 26th Nov 2011.
It was great to see faces known and unknown, and to meet in person those with whom we have been communicating on list.
Despite accidents on motorways, bad weather and traffic streaming towards the venue in a Christmas shopping onslaught, many brave souls battled through and turned up offering warmth, knowledge, friendship, wisdom and support.
I had worried that maybe it might be difficult to get chat to flow – I needn’t have worried! Everyone settled down and quickly took part in introductions and discussions, and there was a sense of ‘homecoming’ experienced by many, some of whom who had never had the chance to meet up in a herd of zebras such as ourselves, and compare stripes!
Topics which were brought up included the UK benefit system, an exploration of what *is* paralysis – when does it stop being weakness and qualify as the full thing. Short histories were given, along with any family inheritance, and some of our less reported (in the literature) symptoms were given an airing, whereby it became apparent that there were several things which whilst not generally given credence by the ‘experts’, there were sufficient of us present who could attest that this was part of our picture.
The effect of exercise on symptoms and muscle recovery was discussed, along with supplementation which people found useful. How we cope was talked about, and it was great to get input from the carers/partners present, who could share information about what helped or hindered, and also to see that there were other partners trying to care for the weird and wonderful condition present in their loved one – they were not alone.
Specific questions were asked about whether PP impacted on soft tissue, joints and bones, and intestinal function. The presence of tetany in people was also explored.
Time flew, and we could have talked for longer I am sure. Of course the information we shared was largely anecdotal, but this is important – we are not a collection of laboratory specimens!
It was apparent that we all share a common theme of ‘getting on with it’, with dignity and humour and some frustration at times. We shared our treatments, what worked what didn’t, and who we saw – who was good, and who we should avoid! The path to diagnosis was quite different for a few, though we found many of us had had alternative diagnoses, suggestions of it being stress or psychological in nature, or had our PP diagnosis removed and reinstated at least once.
The outcome was that we could all recognise and empathise with how we each came to be in that room, and a sense of camaraderie grew from it. We decided that we had a desire to establish regular meetings, and move it around the country to enable others to attend, and share out the travel burden. We even had a volunteer for the next one – thanks Malin!
Thanks go out to Sandra, Lynette, Guy, Linda, Malin (who made us some wonderful hypo friendly baking, but cautioned us the recipes were highly experimental!) Mark, Rob, Hannah, Emily, Luke, and Angela, and our partners Ceri, Tim, Nigel and David (who maybe would have liked to go off and natter about golf or football, but didn’t!). Thanks to Jamie for taking care of the baby, and Megan who made us laugh by asking if the reason she didn’t want to get out of bed might be because she is like us. We said ‘No, it’s because you are 14!’ Nice try Megan! And thanks to Charlie who hung around all day waiting for his mum (me) to stop talking and go home and get him some tea!
Thanks also to David Lloyd Leisure for the free use of their conference room, and to Ross Sutherland, the manager who had his chef make us fresh hypo friendly soup – no sodium.
Gratitude to Mark Davison of The ID Band Company who loaned samples of their medical alert stock for us to look at. He has also pledged to donate 10% of sales from PPI members to the PPI.
