Book Review

My latest book “A Silver Lining” has been well received and the message of keeping cheerful, maintaining a positive attitude and making the most out of my life whilst battling chronic disease seems to be getting across. I am just an ordinary woman, who you would pass by in the street, not realising for one moment what my life is like. We've all at some point in our lives fallen in love, had children, lost loved ones, known grief, laughed and felt joy; for all these things are part of life. Although there is a serious undertone to my book, I have included many humorous true stories which I am sure most of you will be able to relate to, making this book light reading and hopefully bringing a smile to your face. A tale of two diseases; I refuse to give up by using a sense of humour to get through each day. Eternally optimistic I always manage to find a silver lining despite great adversity.  I would like to thank Barbara Morrison, a poet and writer, for writing a wonderful review of my book which you can read on her weekly blog site where she writes from a literary viewpoint. "A Silver Lining is available from Amazon or from Smashwords. 

Disease orchestrated

Having two chronic diseases makes my life quite difficult (and that’s a British understatement if ever there was one!) Trying to keep both diseases under control, receiving the optimum medication and improving my quality of life is no mean feat. Our family doctor is the integral glue that like a conductor holds an orchestra together; she is the central pivot of doctors who take care of me specializing in their different fields. Like a driving force, with fresh eyes and new ideas, she has made quite a difference to the ensemble who look after me. One section of my personal orchestra specializes in Gaucher whilst the other sees to my Parkinson’s needs. But one needs a skilled ‘conductor’ (family doctor) with soul, to hold it all together resulting in the best harmony. I think I can honestly say, that I am feeling the best I have for quite a long time, and this is thanks to all the doctors and nurses working together in unison. It has taken quite some time with trial and error to get my Parkinson’s medications just right, and now with the huge added bonus of being able to actually sleep at night, so no more mid night writing sessions at the kitchen table till the wee hours of the morning, I blissfully sleep a whole night. What a pleasure! I cannot tell you for I don’t remember the last time I slept an entire night with no pain. It might literally be years! To sleep unhindered by pain, leaves me feeling refreshed and rejuvenated in the morning and much more able to cope with getting through the day. Not to mention that my husband is now not disturbed by my lack of sleep and the unpleasant feeling of seeing me in pain and unable to do anything to help. So he too has benefited and at long last can sleep undisturbed. I think if I had a theme tune it would have to be a song by The Corrs, entitled “At Your Side”.

“How are you?”

In general people are kind and thoughtful, and when asking “how are you?” although I'm never entirely sure if they are just being polite and would prefer a simple “ I'm fine thank you”, or if they really want to know. What bothers me far more is that people don’t think to ask my husband, who is my caregiver. There appears to be only one person who regularly asks my husband “and how are you?” and this is our wonderful neurologist, who I thank my lucky stars that I am under his expert care. Upon every visit, he always addresses my husband, and I think his empathy and consideration mean a great deal to us both. So much focus is generally on the patient, the caregiver is often left on the side lines, when in fact they are an integral part of the picture. Some caregivers, given half the chance, would love the opportunity to unload and talk about what they are going through. Others, might prefer just to talk about anything except the issue of care-giving  for they live it 24/7 and need a break from its suffocating effects. Each person is individual and deals with pressures and concerns in their own way. Offering to help is always greatly accepted, but only if it’s in a real and constructive way. Simply saying to someone “give me a call if you need anything” is of no help whatsoever, as I can assure you, someone in need will never pick up the phone and ask for help. What is greatly appreciated is simple practical help. If for example you say “ I'm going to the post office, do you need anything from there?” or “ I'm going to the supermarket, do you need any groceries whilst I'm there?” This kind of immediate direct offer is the best kind of help you can give a caregiver. Just helping with a simple errand is much appreciated. So don’t wait to be asked – jump in first and be proactive. 

Up-front

Sorry guys, but today’s hot topic is bras! Front fastening bras to be precise – so you may want to skip this blog if you’re male! I promise tomorrow’s blog will be gender free! Having Parkinson’s, dexterity in ones fingers is seriously compromised, not to mention a lack of range of motion in shoulders and arms – hence doing up a bra that fastens at the back requires some assistance. I cannot manage this seemingly simple act, and have to enlist the help of my husband or daughter. I need to be quick in the mornings, (which is easier said than done for anyone with PD) to catch one of my family before they disappear off to work, leaving me in my pyjamas for the entire day, which is neither a nice feeling nor a pleasant sight. I was surprised and disappointed when going into some of the well-known major stores in London who have underwear departments with a large selection, including the helpful services of professional fitters; for there were no front fastening bras suitable for a Parkinson’s patient. There were of course maternity bras – but I think I'm pretty well past the point of needing one of these. The only front fastening bras they could offer had from 6 to 8 tiny hooks down the front, which require great dexterity and made the bra into some huge cumbersome apparel. I have yet to find a front fastening bra that is simple and easy for someone with Parkinson’s to manage alone. Maybe manufacturers should think of creating something to fill this need, for I'm sure there must be a market – I can’t be the only one!!!

Hurricane Sandy

We all encounter ‘off’ days where we have a moan and feel a little sorry for ourselves, but things are put sharply into perspective, as we recently watched the terrible events on television unfold as Hurricane Sandy destroyed everything in its path, leaving devastation behind. My heart goes out to all the people affected by this natural disaster. I can’t begin to imagine what it must be like to lose one’s home, and all one’s belongings. The rippling effects of the aftermath are so enormous, it makes one wonder how and when some semblance of normality will be re-established. Man can plan and take precautions, but in the final event we are no match for Mother Nature’s natural elements. With the winter weather arriving, the problems must be compounded, and merely keeping warm and dry becomes a pressing concern. Our prayers and thoughts are with all the people who have been affected, and may your lives be restored to normality as quickly as possible.

Staying positive

Negativity is contagious, and should be avoided like the plague. Being around anyone who brings you down, makes you feel bad and has nothing but negative things to say – this is a relationship that quite frankly you should steer away from. People who say terrible hurtful things and although you may be on the receiving end, those harsh words are not aimed at you, but are actually revealing that they have a problem with their own identity. Sometimes people simply don’t have a ‘filter’ and are unable to think before damaging spirit crushing words come pouring forth. I have said it before, but can’t stress it enough, that words have great power, and can have a good or bad affect. Staying positive, not only is highly important to my own state of mental health, but vital to my family and all those around me. Even if you are healthy it is just as important to stay cheerful; battling disability or suffering chronic disease, it becomes crucial to one’s well-being. A well-known line from a film comes to mind: “If you can’t say something nice, don’t say anything at all”. I'm going to leave you guessing from which film this comes as I was surprised to find its origin. But I think we can all agree that staying positive, cheerful and looking on the bright side is most definitely more rewarding and resulting in a better state of health both mentally and physically. Let me wish you all a wonderful weekend, and hope that you are spending it with those who lift up your spirits and bring joy into your life.

Parkinson’s effect on our children

How does suffering from Parkinson’s affect one’s children? This is a question I have been asked many times. My personal situation is a little unusual, since I was born with Gaucher, a chronic disease; therefore my daughter has never seen me as a healthy person. She grew up not knowing anything else, so when I was diagnosed with Parkinson’s at the age of 44, although certainly upsetting, she obviously took it differently from a child whose parent has always been healthy. However, when Parkinson’s hits someone who has been healthy and led a normal life until diagnosis, the shock, realization and changes that have to be made in the family are a tremendous challenge and can be received with reluctance and conflict. For a child to understand that things are never going to quite the same at home again must without doubt be a scary and unsettling thought. Keeping children in the picture and up to date with what is happening is very important. Children are far smarter than we give them credit for, and retaining information from them is counter-productive. As much as a child may end up helping in the home, they should not be robbed of their ‘childhood’ and participation in extracurricular activities, should be encouraged. The additional worry that a child may encounter is “will I also get Parkinson’s?” This is only natural and a very valid question. Unfortunately there is no clear answer to this question for now, but the likelihood is pretty low. There is so much research going on all around the world, it’s only a matter of time before our questions are answered, and a cure is found.