The sandwich generation

We are often called the 'sandwich' generation, for whilst still bringing up our own children we find ourselves additionally taking care of aged parents. My daughter may beg to differ, for she has unfortunately received a double dose, and possibly a 'double decker' sandwich would be more fitting a title in her case. My daughter helped me take care of my mother as her health declined due to dementia which pushed us all to our limits despite our love and devotion to her, and unexpectedly now finds herself for some years also looking after me whist I battle Gaucher and Parkinson's. Being a child with a sick parent is not an easy position to fill and part of her childhood inevitably has gone by the wayside. A child grows up awfully quick, learning life skills and taking on responsibility that far outreach their age or level of experience. I have seen this in other families who are in similar circumstances, and there is a huge difference in maturity and abilities that most children with healthy parents are not exposed to. I often feel guilty that she has not lead a normal care free childhood, but what she has gained is beyond measure; a wealth of experience that has prepared her for almost anything life should throw her way, making her a remarkable young woman.

Michael J. Fox Interview

In a rare personal interview, Michael J. Fox, who was diagnosed with Parkinson’s at the age of 29, tells us of his journey and how even if he could go back in the De Lorean Time Machine (from the film “Back to the Future”), he wouldn't change a thing. Our destinies are not always what we would have hoped for or imagined, but Michael has embraced Parkinson’s’ with the aim of raising funds to find a cure, and through a great television show “Curb Your Enthusiasm” with his unmistakable humour and charisma, brings greater understanding to the general public of this life changing disease. Please take the time to look at this interview link, and pass it on to as many people as you can to raise awareness. I have a small voice, but luckily with a well-loved celebrity such as Michael J. Fox speaking for us all, Parkinson’s has been given a world stage to get our message across. Keep up the good work Michael, and as a fellow sufferer, I congratulate you on your strong determination, drive and initiative. You have brought us many hours of pleasure through films and television, and are now possibly doing the most important work of your life. You give us hope! 

Answering your questions

I have been flooded with questions, all basically about the same topic: insomnia. Clearly a lot of Parkinson’s patients our there are suffering from this most irritating and exhausting symptom. Forgive me for answering you all together in today’s blog, for I usually answer every e-mail personally, but typing is becoming difficult for me and writing the same reply to 23 people seemed a little silly. I am not a doctor and have no medical training, and just want to make it clear that I am simply a patient who is sharing information, useful tips and my personal experience with you. Every patient is different, so what medicines work for me, may not necessarily work for you. In answer to your questions: The pill I take at night is called Clonazepam (generic name), which I now take one hour before I retire. I had been taking it too late at night and it was therefore not as effective. The Dopamine also has been spaced out at four hourly intervals during the day, making sure I don’t take it too close to eating food, in particular protein. I try and wait a whole hour after taking the Dopamine before eating. Sometimes this cannot be avoided, if one is going out or eating at someone’s house. I am in the fortunate position of being under the care of a very good neurologist, and whenever he suggests a change of medications or schedule, I know that he has my best interest at heart. Thank goodness, this combination is working and I am sleeping around 6 hours a night now, instead of 2 or 3 hours! A huge difference!!! If you are suffering insomnia, speak to your doctor on your next visit and ask what changes you can make to help alleviate this symptom.

To err is human

“To err is human; to forgive, divine” is a well-known quotation from an essay written in 1709 by Alexander Pope. How many times have we heard this, but do we really take it to heart? No one is perfect, everyone makes mistakes; doing what we think is best at the time, making a decision in haste not thinking about the repercussions, or simply speaking without thought or consideration for the other person. We are all guilty at one time or another of small indiscretions, but this is part of what makes us human. Realising we've made a mistake and owning up to it, making amends where possible takes guts and maturity enabling one to move forward. Holding onto old wounds, anger or bitter feelings ultimately only causes damage, and is an unhealthy negative cycle. By letting go and forgiving, you in fact release yourself from that burden. I have the habit of speaking the truth; it’s in my nature. If I can’t say the truth, I would rather not speak at all, and sometimes this is not received well, so if I have offended someone by being brutally honest and truthful, I apologise. A new day can be a fresh start – it’s never too late to turn a page and begin anew. Life is not simple, relationships are often complicated, and the road on which we travel can be a bumpy unpredictable ride especially when suffering chronic disease. I wish you all good health.

10 Things not to do

Everyone has a “to do list” – well at least most of us, but how many have a “not to do list”?

1. Don't leave a glass perched dangerously close to the edge of the table.
2. Don't buy more ice cream, as you know who'll finish it! 
3. Don't try getting dressed when still damp after a shower - it's just impossible.
4. Don't let everyone leave the house in a hurry in the morning before dressed, or it's all day in pyjamas again!
5. Don't walk too close to the dog's water bowl - the floor is slippery.
6. Don’t walk on a crowded pavement. No one notices a lack of balance.
7. Don’t forget to take medication, otherwise memory fails and I’ll repeat no.2 on this list!
8. Don’t attempt painting fingernails again – big mistake.
9. Don’t put a cake in the oven and forget to set the timer.
10. Don’t assume everyone else has also lost their sense of smell !

Now for something to put on your "to do list" - an entry from my blog appears on The Itima blog site, so you are welcome to take a look and leave a comment.

"Parkinson’s, shaken not stirred" on radio

I gave an interview on Triangle VarietyRadio, an Internet Radio talk show that has an  interesting programme called “The Author’s Corner" hosted by Elaine Raco Chase, which is aired every Thursday night between 8 - 11 pm Eastern Time. This prime time station is based in Person County, North Carolina/USA; having over 40,000 Google hits, so clearly a growing and popular show. They touch on domestic and international topics, business experts and authors.The talk show is aired live; several guests on line together with Elaine, along with pre-recorded interviews due to time differences. Elaine interviewed several up and coming authors, and the questions and debate was lively and entertaining, hearing directly from those who love to write, what spurs them on in such a difficult industry today, and how the entire publishing business has changed over the years due to technology and in particular the electronic book. The question of audio books appeared a hot topic, particularly for those with impaired vision. Elaine introduced me and spoke about my mystery/adventure book (fiction) "Slipping Through Time" and then went on to interview me about my book  “Parkinson’s, shaken, not stirred”, available on Amazon, the book “I’ll Blog Till I Drop” available for FREE on Smashwords and my most recently published book “A Silver Lining” (also available on Amazon), about living life to the full despite suffering two chronic diseases. If you would like to listen to the show click on this link. The show is over two hours long, and I am introduced towards the end (I come on at just over two hours into the show) The link shows the time in minutes, and I start at around 122 minutes if you want to use the slider to fast forward to my interview (which is approximately 8 minutes long). I hope you'll listen to the POD Cast and enjoy the show. Thank you Elaine for having me on your show.

Caregivers are heroes

I want to acknowledge anyone who is a caregiver, for it is a thankless position that can’t be added to one’s curriculum vitae, nor does one receive job satisfaction or financial reward. The hours are long; constant challenges tiresome, no vacation or time-out, it is a 24/7 job. There is no course or studying to prepare the caregiver for what lies ahead, and no diploma awaits, despite the wealth of knowledge and life experience unwillingly gained along the way, that would suffice for a university degree. It’s the kind of appointment that one didn't ask for, never dreamt of taking on, and yet many around the world, tirelessly day in and day out perform their newly given task of caring for a person they love. Often family and friends are unaware and barely know what a caregiver goes through. The mental anguish alongside the daily logistics and physical work involved with taking care of someone who is chronically ill, takes great strength of character, devotion, much patience, a sense of humour and a lot of love to fulfil this unwelcome task. If you are a caregiver – you are not alone, for there are millions of people who stand in your shoes, and I applaud you all. Stay strong and take one day at a time. Remember that you are a hero!