Rare Disease Awareness Day

Many diseases have a special awareness day each year, such as Parkinson’s disease which is on April 11^th commemorating Dr. James Parkinson’s birthday. Rare diseases by definition aren't afforded the same exposure, so many are grouped together, including Gaucher’s disease, and Awareness Day for Rare Diseases is rather appropriately assigned to 29^th February. Gaucher Disease was discovered by a French Doctor Philippe Charles Ernest Gaucher (1854 –1918). Although Gaucher disease was first documented in 1882, it was only in 1965 that the true biochemical nature of Gaucher was understood. If you would like to join me in bringing awareness of Gaucher and other rare diseases, simply leave a comment on this Blog entry (anonymously if you wish) as a way of showing your support, or you can take a look at Rare Disease Day Site  

Support Team

I have to say a big “thank you” to my daughter and the ladies who kept an eye on me whilst my darling was sailing on the high seas. Their friendship and support is a valued gift and got me through the week. I don’t know if they gathered together and pre-planned their “support relay” but I was kept well entertained, busy and fed during the five days my husband was away. I even had marvellous phone and Internet support. What more could I have asked for? Receiving wonderful support, whether family or friends is priceless, and I consider myself very lucky indeed. Through writing my book and blog each day, I have also made invaluable contacts with other fellow sufferers and a sort of global support network has been created. To be in communication with someone half way across the world that has Parkinson’s, lending a listening ear that relate and understand totally, is pretty cool I think. Ladies, I truly appreciate your concern and support - thank you all.

Caregiver Respite

Being a caregiver is not an easy job, and many don’t fully understand how demanding, stressful and never ending this uninvited role becomes. It’s a responsibility that never goes away – 24/7 and sparks many emotions in both parties; the caregiver and the one who is disabled. I am well aware of how my devoted wonderful husband needs a break from the daily task of taking care of me. My husband has a Skipper’s Licence, and had the opportunity of sailing with a group of other qualified skippers for five days. Naturally part of me didn't want him to go, but I knew it was important for him to clear his head, and have a complete break from work and looking after me. It took them 28 hours to sail non-stop there with winds of 25 knots, swells and waves up to 2 meters. They moored for a day in a marina, going ashore to sample local cuisine, before making the return journey. This morning my sweetheart returned home, and it’s awfully good to have him back. He looks great, and has had an amazing experience, an adventure that re-charged his batteries and did him the world of good. So my advice to any caregiver is to take care of yourself, for you deserve a break and it’s essential to take leave now and then. Likewise I would say to any fellow sufferer, how crucial it is consenting wholeheartedly for your caregiver to have a deserved time-out, acknowledging their needs are just as important.  

Vitamin D

Vitamin D deficiencies are common today. Years ago we thought nothing of spending time outdoors in the sun, allowing our bodies to naturally absorb vitamin D, but in recent years with concern about skin cancer, we are all too ready to slap on sunscreen before spending even short periods outside.  Although one should be vigilant not to burn and be aware of skin damage and changes, I think we've taken things too far and many of us are not receiving the correct amount of vitamin D from natural sunlight. I was shocked a while ago to find I had a serious deficiency and am now taking oral drops daily to replenish this deficit. If you are like me, spend most of the time at home inside away from the sun, a serious lack of Vitamin D can affect many areas of one’s well-being – something we should all be aware of. Our garden is like a sun-trap, so you know where I'll be sitting later today!

Three wishes

When my daughter was very young, someone asked her “If you had three wishes, what would they be?” The answer was typical of any child that age and I believe it went something along the lines of: “Going to Disneyland, getting a puppy and living in a big house with a swimming pool.” The person questioning her asked “ Wouldn't you wish that your mummy didn’t have Gaucher disease?” to which my daughter’s direct and straightforward answer without a moment’s hesitation was: “Mummy wouldn't be the same mummy without Gaucher!” This statement so honest and simple from a child’s perspective, made me think. My daughter had never known anything else – I had been ill since she was born. Just as some mothers have blonde hair or work from 9-5 in an office, I have Gaucher disease. It’s as simple as that. There was never a question or thought in her mind of wanting or wishing for a different mother. Gaucher doesn't define who I am, but without doubt it is part of my life. What defines me is who I am and what I do. Despite having Gaucher and Parkinson’s I continue to live my life to the full, and do my utmost to bring greater awareness of these two diseases, whilst helping and offering support to others wherever I can. However, if there are any genies or fairy Godmother’s out there reading my blog – could you please grant me three wishes (I’d make do even with just one wish)!

A good hand

I found the other day a “Four Suiter Card Holder”. If you are a card player, this is a wonderful idea that makes holding multiple cards in one hand so much easier. This holder is made from wood, has four-tiers, allowing you to view all your cards. When I saw this gadget, it brought to mind the verse of one of my poems:

“As the disease progresses, dignity goes out the door,

The shell of the person, who once was, is now a façade,

And just when you think, you can't take any more,

Parkinson's deals you, one more terrible card.”

Go to the mattresses

I'm all in favour of a bargain, and I know it’s kind of sad, but the mere mention of a “sale” my heart starts racing. But seriously, if I can be serious for a moment; when it comes to purchasing a good orthopaedic mattress, I believe in buying the best and most comfortable one can afford. Think of how many hours you spend each night, every week, month, year after year lying on a mattress. Spending so many hours in bed, I think it is imperative that one should have the proper support, no matter what the cost – its money well spent. I don’t think this is quite what the Godfather had in mind when he said “Go to the mattresses”! What a great classic film!

          

Amazing Story

I am very excited as my story of how I obtained an old fashioned Singer sewing machine has been published on Singer's site, who are celebrating their 160th birthday. I hope you enjoy reading my story entitled "For many years I've wanted" (Feb 19th) which is an amazing story - these things don't happen just by chance - it's one in a million! Have a great day. To read my story go to: www.mysingerstory.com.

Lost for words

It is so frustrating to be in the middle of a conversation, when all of a sudden words escape me, or I simply forget what I was talking about having gone off at a tangent. Family and friends are most understanding, and sometimes a form of charades ensues, making the whole pathetic and rather embarrassing situation a little lighter. I also have acquired the uncanny ability of saying a sentence back to front, or pronouncing words wrongly. On occasion I even invent an entirely new word that could very well be of interest to the Oxford English Dictionary should they be short of new words for their ever expanding volume. In fact thinking about, it's amazing anyone can understand me at all, yet thankfully my writing ability does not appear to be affected. A doctor once explained to me the difference between the brain's ability of 'speech' and 'writing', and why my memory is poor, but for the life of me I can't remember what he said!

                                  

Identifying Pain

Parkinson's patients experience a certain amount of pain, some easily explained such as muscular and other pains not entirely explicable. Having Gaucher and Parkinson's disease puts me in a unique position (believe me, I would far rather not be quite so unique!) in experiencing two completely different sets of pains which I can generally distinguish between. I had a tooth ache some years ago, which reflected down into the jaw bone for a few days. I made an appointment with the dentist, but the following day the pain mysteriously abated. I didn't cancel my appointment for fear that the pain would surely return. The next day I went to the dentist, even though the pain still had not returned. Our wonderful dentist, who I trust implicitly, checked thoroughly but could find no explanation why the pain had suddenly appeared and then magically disappeared. There seemed to be nothing wrong at all, so I returned home, and several years have now passed and this tooth has never bothered me since! Should you have Gaucher or Parkinson’s, or incredibly lucky enough to have both like me (I say this with great sarcasm!), bear in mind it could very well be an inexplicable pain not related to your teeth at all. I found an article about pain with Parkinson's and after reading it, wanted to share it with you here.

Guess Who’s Coming to Dinner?

“Guess who’s coming to dinner?” I asked my husband. He hadn't a clue, but knew it wasn't Sidney Poitier. We were delighted to have over for dinner Jill Sadowsky, the marvellous author of “David’s Story”. Jill is a courageous, amazing woman, who speaks with insight and compassion. I found we have very much in common, and share a mutual passion in education and awareness. Sadly, in our modern world, we still need to stamp out stigma and shame regarding mental health and disability – making these undesirable character flaws a thing of the past. It was a pleasure meeting this remarkable lady who is on a mission, like me, so here is her blog site if you would like to take a look jillsmentalhealthresources   Have a great weekend everyone, and I hope you do something enjoyable, spending time with those you love. Wishing you all good health.

Profoundly Life Changing

Talking with a man I've known for some years, I was taken aback by his account of how a heart attack had profoundly changed his view on life. As if by grace given a second chance, his ordeal left him with the gift to see life from a clear uncluttered perspective. He is able to really see what is important, pays attention, noticing things others are oblivious to, and knows what matters most. He has miraculously been given the insight to what so many spend a life time searching for. So I now realise that this unassuming, quiet, charming man, ‘gets it’! Still waters run deep. As in the popular award winning film “Avatar”, the line that comes to mind: “I see you”!

There's no place like home

Being disabled, I spend much time at home, so it’s important that I feel good in my surroundings. The kitchen seems to be the central element of our home, a place where everyone congregates, by the warmth of the stove, where a pot is merrily simmering, beckoning to taste a comforting bowl of hot soup. The oven exuding the delicious smells of a chocolate cake that has yet to make its appearance and the tempting aroma of freshly brewed coffee floats through the air invitingly, as all are gathered around our small kitchen table, in a squashed but cosy atmosphere. They say that “home is where the heart is” and as corny as this may sound, I think it’s very true. No matter where one travels, be it business or pleasure, there is no place like home. 

Valentine's Day - Parkinson's way

I enjoyed meeting a lovely group of ladies last night when I was given the opportunity to speak to them about living with Gaucher and Parkinson’s, imparting some knowledge whilst demonstrating one can live a full happy life, be positive and cheerful despite battling two chronic diseases. I hope I gave you all food for thought and appreciate that good health is a precious gift.

A romantic at heart, I cannot let Valentine’s Day go past without indulging in a little romance and as foolish as it may sound, I rather like receiving red roses and chocolates. Although Valentine’s Day is not celebrated everywhere, it has become more known and popular as the years pass. I believe that any excuse to legitimately be sentimental, expressing ones passion and indulging in some romance, is something we could all do with a little more. I for one will be making a special dinner, starting with cocktails, shaken not stirred (of course!), followed by……well I had better not say any more for my husband may very well be reading this blog, and I’ll have blown the surprise. So the remainder I will leave to your imagination. Have a happy Valentine’s Day.

Speaking engagement - clad in armour

Tonight I have another speaking engagement, and see this as a great opportunity to spread the word bringing greater awareness about Gaucher and Parkinson’s disease. Whilst I can still talk and get my message out there, I shall endeavour not to miss any chance to speak, whether to a small or large audience. I rested all day yesterday, and intend doing nothing today so I shall have enough strength to deliver and impart, what has become somewhat of a campaign over the last few months. Information and education is my crusade, I have a smile as my shield, and a strong fighting spirit as my armour. I'm ready for battle – bring on the public speaking!

Home infusion, no intrusion

Having enzyme replacement therapy for Gaucher disease at home thankfully decreases the necessity for frequent hospital visits, thereby improving vastly my quality of life. Treatment of Gaucher today barely intrudes on my life at all, although I do feel somewhat like a pin cushion, many needles stuck in me over the years, but I take this in my stride. So here I sit once again, hooked up to an i.v. line, which I receive twice a month keeping Gaucher disease under control. Gaucher being a rare chronic genetic disease, there was no treatment available until 1990, when the first ever treatment was finally tested and proven. Today, fortunately science and medicine have come a long way, and there are several companies now making the enzyme that Gaucher patients are missing. To date there is still no cure, but I live in hope, and as I said to a fellow PD sufferer just yesterday, I am the eternal optimist!

Don't end up on your butt!

They say most accidents happen in the home, and having Parkinson’s I am very wary of falling on my butt, particularly in the bathroom. A broken hip or leg is the last thing I need! There are several things that one can do to make things a little safer, such as “anti-slip mats” on the bathroom floor which provide a slip resistant surface. “Grab bars” are a great idea providing stability and support when standing or sitting. I have found a long handled bath brush invaluable since having limited range of motion, and is most helpful reaching my feet or back. Also “wash mits” are helpful when losing dexterity in ones hands. If you are renovating a bathroom, think about putting a permanent bench (built into the shower area) which provides a safe and good place to sit whilst showering. If anyone has other useful suggestions, I would love to hear.

Exciting Parkinson's breakthrough

A news report by Michelle Roberts (Health Reporter) for the BBC News wrote about Genetic Parkinson's disease brain cells made in a laboratory. The breakthrough means they can now see exactly how mutations in the Parkin gene cause the disease in an estimated one in 10 patients with Parkinson's. If you would like to read the article for yourself, here is the link: BBC News With so much research going on all around the world, let's hope a cure is not too far away.

Birthdays

It is not my birthday today, but it would have been someone’s birthday who will always be very dear to my heart, and is greatly missed. The pain of losing someone close never entirely goes away, and my heart will constantly ache for my loss. We have always made a big fuss of birthdays in our family, and I will continue this tradition. I don’t think of a birthday as one aging and simply growing a year older. Instead I see it as a time to celebrate that someone special was born, enabling you to express appreciation that they are part of your life, a time to reflect on all the happy occasions and memories, giving a good opportunity to show you care. 

A film worth seeing

We watched a film called “Love and other drugs” starring Anne Hathaway and Jake Gyllenhaal, which is about a 26 year old woman diagnosed with Parkinson’s. The story is a drama/romance winning awards at the Golden Globes for 2011, and is well worth seeing. Needless to say anyone with Parkinson’s will undeniably relate to many of the scenarios, but the film would appeal to a wide audience for the captivating attraction and enduring love between a woman and man enchantingly speaks universally to us all.

Hats off to the staff

I take my hat off to the amazing staff who work at the Retirement Home nearby. I have been visiting there regularly for the past five years, and on many occasion have had opportunity to witness first-hand the very high standards to which the facility is run. The staff are indeed quite remarkable, and it is not merely a job, but a vocation. They are dedicated, caring and compassionate, treating the residents with dignity and grace. The patience and gentle understanding they demonstrate is clearly evident, and should it ever be deemed necessary for me to be placed in a Home, I hope I am fortunate enough to be cared for in a residence with comparable standards. It is heart-warming to see the kindness and empathy with which they carry out their daily duties. One truly sees the best of humanity. 

Good morning to all

I’ve always been bad at recognising people, and remembering names even worse, so taking a leaf out of my mother’s book, it became far easier and less embarrassing to simply smile and say hello to everyone I meet. Visiting a retirement home nearby, it can take me half an hour to get from the door to the actual room I am visiting, for along the way I say hello and chat to all the residents and the staff who know me well, and then upon leaving, the whole episode is repeated by saying goodbye. In the 24 hour care unit, where sadly residents no longer able to care for themselves, wheel chair bound, and in a condition that no one wishes to be in; I find myself drawn to these people who are now merely a shell of the person they once used to be. Looking around at the men and women, each one someone’s mother or father, all with an interesting past, a long life filled with experiences and marvellous stories to tell. But like a well-kept secret, they are now out of our reach. It’s so important to listen to our parents and grandparents stories whilst they can still remember and retell them, for once they have gone, those precious pieces of your family’s roots and history is lost. So when your grandparent or parent repeats a story for the umpteenth time, listen with patience, compassion and remember what they impart, for one day you’ll be glad you listened.

I just can’t sit still

I pity anyone unfortunate enough to sit behind me at a lecture, for unable to sit still, my constant fidgeting must really irritate others. Likewise, I think I should stay clear of auction houses too. Can you imagine with every twitch, jerky movement or shake; with no intention of purchasing anything at all, I could accidentally put the price up of whatever is going under the auctioneer’s hammer. Playing Poker or Bridge would also be highly distracting to any serious player should they find themselves at my table. So I think I should stick to activities where it is perfectly alright to wriggle and shake. This morning we saw many people in an organised run, escorted by police cars and support teams, and presume it was in aid of Cancer, as all the women were wearing pink hair bands. How I would love to be able to run but I can neither run nor sit still, but I do my utmost to live life to the full, and will enjoy the weekend, seeing family and friends, who enrich our lives. Have a great weekend, and enjoy, relax and spend time with people who make you smile and laugh.

I Welcome Feedback

I have received quite a few e-mails asking how to leave a comment on my blog without revealing personal information or identity. I understand and respect your wishes to remain anonymous. Once you are on my Blog page: go to the end of the particular blog entry that you want to comment on and you'll see "Comment" at the bottom, click on this and then write your comment in the box that will appear. Then click on "Select Profile" after which click on "Anonymous". Then click on "Publish", and type in the security word that appears (this is just to ensure you're not a machine but a real person) and then click on "Publish" once more. It's as easy as that.  I welcome any questions and appreciate your comments, any feedback is warmly received. Wishing you a great day and good health.