Neurological Associates Paper

I was surprised and delighted to learn that an article appeared about me recently in the Neurological Associates of West Los Angeles. Word of my little book with its big message seems to be reaching far and wide. I will continue to spread my message of hope and positive thinking, striving to bring greater awareness of this debilitating disease, and shall keep up the fight. Education and knowledge are powerful tools, and through my book and this blog I am reaching many people around the world. Fellow sufferers and caregivers are relating to what I write, and people in the medical profession appear to be intrigued at my stark honesty and how I tell it just as it is – not sugar coated – but “raw” and truthful. Everything I write is from personal experience,  so this blog is my own Parkinson’s journey.

Curiosity killed the cat!

Sitting on a bench looking out over the sea, at a distance some women were having a rather heated discussion. Although I couldn't actually hear what they were saying, from the violent hand gesticulations and enraged looks, they were both upset and the nature of their conversation must have been serious and probably one best not discussed in public. Curiosity getting the better of me, I put on my glasses, for although I couldn't hear what they were saying, I know how to lip read! Yes, my secret is out, I can lip read. My mother taught me many years ago, and it has been a very useful tool. Now understanding what they were talking about, I was in a quandary for I knew the answer to their question, and yet how could I walk up to complete strangers, interrupt their private conversation with the solution, showing I had been listening (or in my case reading their lips). I hasten to add, I took off my glasses and did nothing! I was in a similar situation some years ago when having a scan done of my hip, and the doctor and  technician were engrossed in a conversation about me behind a glass window. I lay there watching them, and although couldn't hear a thing through the sound proof glass, I could read their lips very well. The technician was asking the doctor how I could lay there without screaming, as the scan showed clearly an AVN (Avascular necrosis of the bone) that was severe, he knew I had to be in unbearable pain. When the technician came into the room to remove me from the scanning machine, he was so sympathetic and gentle, I didn't have the heart to tell him I was on morphine which keeping me from screaming, not to mention my British stoic upbringing of not making a fuss. Sometimes, its best just to keep one’s mouth shut!

Good morning

Waking in the morning, it’s almost as if my body has lain still in one position the entire night and frozen. The stiffness and rigidity with which my body is encapsulated is incredibly painful rendering it difficult for me to move let alone actually get out of bed. I presume this is how most Parkinson’s patients wake up in the morning. This is how I start my day, and no doubt millions of others just like me.This may sound strange, but I have it on good authority that silk sheets make it easier to roll over and move in bed. Several people with Parkinson’s have told me this, so I shall give it a try. It’s amazing how just a shortage of a chemical in the brain, is responsible for changing one’s life so drastically, the repercussions of which fan out to the rest of the family and friends who are stoic enough to stick around.

Barbeque etiquette

I think most of us enjoy barbeques, the smoky charcoal taste turning any simple piece of chicken or meat into a delicious mouth-watering feast. Sitting outside in the pretty garden, flowers blooming, the pleasant spring weather a delight; what could be nicer than sharing a leisurely meal with family and friends? You are probably wondering what on earth a barbeque has got to do with Parkinson’s! Having difficulty with using cutlery, it is perfectly acceptable to use one’s hands at a barbeque. Those difficult chicken wings, meat on skewers or steaks which require an amount of dexterity in one’s fingers when normally eaten with a knife and fork, one is suddenly afforded the luxury of barbeque etiquette and able to use one’s hands. Everyone at the table has sticky BBQ sauce on their fingers and suddenly I don’t feel like a fool – for a change we’re all equal. What a delight to feel so at ease during a meal. I can see we’ll be doing a whole lot more barbequing when entertaining from now on. 

Family relationships cont.

I reiterate I am not a doctor, simply a women suffering chronic disease sharing my thoughts and feelings with you through this blog. To continue with yesterday’s topic, when a member of the family is chronically ill, much time, energy and thought focus on that individual. People are always so busy asking how I am; they may forget to ask how my husband is bearing up. Attention to other family members, in particular children, can sometimes unintentionally wane. Children may be old enough to fully understand and appreciate these unfortunate circumstances, but it does not detract from the fact that their sick parent often takes priority. Limitations on family trips and outings, even simple visits to the doctor or shopping (groceries or other items) all have to be adjusted accordingly taking into consideration my condition, and what should be a regular excursion often turns into a military style operation. Every facet of daily life has to be thought through, and this continuous endeavour can be exhausting for all the family. My daughter copes admirably, and helps me without question or hesitation, but I'm sure there must be times; it would be a sweet reprieve for her, not always having to think about my needs first. Being honest with your family; keeping the lines of communication open, and upholding a pleasant atmosphere in the home are just a few ways which help improve a challenging scenario.  

Family relationships

How Parkinson’s or any disease affects one’s family is a complex issue which I have only touched briefly on so far. The emotional and physical toll, not to mention logistics and financial strains that weigh heavy on a family whilst taking care of someone with a degenerative disease are not to be taken lightly. Many spouses struggle to such a degree that they can no longer continue, and sad though it may be, occasionally these cases end in separation and divorce. I apologise to any male reader as I do not intend to sound biased or offend, but statistics clearly show that female caregivers (probably due to our inherent nurturing natures as mothers) generally stay put and run the course. The numbers of male caregivers show that men unfortunately are often less able to bear the intense heavy burden and ultimately for self-preservation, bale. These are merely statistics, but I’m incredibly lucky and blessed to have a wonderful husband who is patient and understanding, steadfast by my side he supports me through the good and bad days. Despite staying together through thick and thin, both of us having positive cheerful natures (a great advantage), the worry of what lays ahead, and the strain of the days that are not so good, do effect this household. I would be a liar it I were to tell you differently. When I try to imagine how my husband feels when he sees me in pain, and there is little he can do to alleviate my discomfort, or he hears me shuffling my feet from the other room, or dropping yet another drinking glass, the sound of breaking glass must shatter his dreams of the life he thought he would lead. We fall in love, marry and bring children into this world, without knowing or having any guarantee of what the future holds. If your love for each other is strong, it will endure anything that life throws your way, and sometimes even make you appreciate life and what you have in a deep and profound way. Stay tuned, for tomorrow I will continue with this wide-ranging topic. 

First signs

The first signs of Parkinson’s are sometimes vague and subtle, often dismissed or lead to an incorrect diagnosis. Every patient is different, and no two people will experience exactly the same symptoms, therefore the signs can only be an indication. However, if someone has a number of, or all the following symptoms, medical advice should be sought. Generally the first signs are a slight tremor or shaking, possibly in the legs when you are sitting down, which was in fact the first symptom that I felt, but just on the left side. A change of handwriting is also a sign that something is wrong. Losing one’s sense of smell is yet another early symptom, but as this disappeared gradually, I didn't notice until my sense of smell was completely gone. Trouble sleeping; tossing and turning, disturbed nights is common to Parkinson’s patients. Stiffness in arms and legs, in particular when walking, if your arms do not swing, but stay rigid by your side, this is yet another sign. My husband noticed early on that my left arm did not move when I walked. Speaking, one’s voice can sound soft or horse almost as if someone has turned the “volume” down. I used to have a loud voice and don’t stop talking, so when my voice goes from time to time, this is one of the few symptoms that my household is quite happy about; for occasionally they now get some peace and quiet! Not standing up straight and having slightly hunched shoulders is another early sign. There are no standard or precise indicators for Parkinson’s, as every person is individual so these first signs are only a rough guide. Someone may experience just a couple of the symptoms whilst another might encounter them all. If you are at all worried you may have Parkinson’s I would highly advise seeking proper professional advice, preferably from a neurologist, who is experienced and capable of diagnosing neurological problems. 

Is Parkinson’s hereditary?

I have been asked many times if Parkinson’s is hereditary. I am not a doctor; simply a woman suffering from Gaucher and Parkinson’s disease, who is a writer, sharing my thoughts with you through this blog. As far as I can ascertain, there is no clear evidence and the jury is still out as to whether Parkinson’s is hereditary or not. My particular case is an unusual one, having other immediate family with Parkinson’s, an important fact to remember is we also suffer from Gaucher disease and a connection between these two diseases has been established. Although my family history seems to strongly suggest that in my specific case PD is probably hereditary, I do not want to give a false impression that Parkinson’s in general is inherited. I know of many people who have PD and no one else appears to be affected in their family. Until there is indisputable confirmation proving or disproving, no one can give a precise answer to this question that so many are asking. I'm sorry, but for now there does not appear to be a conclusive answer. 

Loss cont.

I spoke yesterday about “loss”, and wanted to expand a little after speaking to a fellow sufferer. The “loss” encountered when living with a degenerative disease, is the continual decline; slowly but surely life changes, unable to do the things one would like to or used to do. I loved being with people and going out, but now have little energy, am tired beyond exhaustion by early evening, and although would very much like to accept the invitations I receive, I know I will not make it through the night. The loss of dexterity is extremely frustrating, and fighting with zips, buttons is no joke. Sometimes the smallest of chores in the home is so exasperating; pathetically I am brought to tears. Losing the ability to walk far is upsetting to put it mildly (a British understatement if ever there was one!). I used to walk for hours with our dog in the forest and this simple pleasure that I loved, has been stolen by Parkinson’s, who like a thief just keeps coming back to see what else can be taken from me. Unable to drive has become my biggest “loss” to date, affecting my daily life in an enormous way, rendering me housebound. To lose dignity, the ability to take care of one’s self and be self-reliant is what most people fear the most. To save my sanity, I accept (unwillingly) these changes and try to get on with my life, doing the best I can to enjoy my wonderful family and friends along with the things I can still do. Despite everything, I still smile and laugh, and know for sure that I don’t have to look very far to find someone unfortunately worse off than myself. A published author paid me a huge compliment the other day and told me “you are a natural writer”, and so I will continue to write the truth in an honest fashion about my experiences and thoughts, straight from my heart to yours.

What is loss?

Having to deal with loss is a painful process, and one that cannot be hurried. Each person is individual, and every situation is different. We all have ways of coping, but sadly there are those who do not have the necessary tools and like an ostrich spend a lifetime with their heads buried in the sand. Facing loss straight on is not pleasant or easy, taking great strength and courage to move on with one’s life, despite the sad situation. One normally associates “loss” with someone dear passing away. Although without doubt, death is by far the worst form of “loss”, it is not the only one. In the Oxford Dictionary, the definition of “loss” is: the fact or process of losing something or someone. The loss I speak of today is the loss of dignity, independence, and the life one had hoped for. When diagnosed with Parkinson’s, I was well aware of what lay ahead, the various stages which await me, I take pains to be well versed with the disease and the symptoms I encounter; one could hardly say I’m in denial. Yet each time I am faced with another loss, I have to muster up every ounce of emotional energy to accept the ever changing limitations of my situation. This “loss” naturally affects my husband and daughter, as although I am thankfully very much still here, they have lost parts of the former wife and mother who would once walk the dog for hours, be as quick as a flash in the kitchen, full of energy and vigour, like a dynamic energiser bunny I only knew one speed, and that was “fast”!

Getting off the fast track

Often we our caught up on the fast track of life, hurtling through weeks, months and years at an alarming speed. Busy with work, travelling, family, friends and all that today’s hi-tech modern world has to offer, sometimes we find ourselves wishing for things to slow down a little, returning to a pace of life where the pressures were less, demands were fewer, there was always tomorrow and no deadlines to frantically meet. One of the things I have found about having Parkinson’s is, that suddenly I am forced off the fast track, no longer able to keep up, and now amble through life in the slow lane. It has its distinct advantages, but now and then I forget I am no longer able to do things quickly and that although my spirit is willing, my body doesn't want to know. It takes me twice as long to do what I used to, and often find I can’t manage at all, but there are many pluses too, so I concentrate on the positive aspects, looking for the silver lining in everything. My pace of life in the slow lane is much changed from before Parkinson’s rudely and uninvited decided to turn my world upside down, ultimately slowing everything down to a snail’s pace. I can highly recommend travelling in the slow lane, but I very much hope that you can make this transition in good health and without the forceful hand of Parkinson’s disease.

You made my day!

I received the most beautiful e-mail yesterday from a lady whose mother has Parkinson’s. I was very touched and moved by her heart-warming words, which let me know each day as I sit here writing to the world, not knowing who is reading what I write, that someone somewhere knows exactly what I am going through. Only a fellow Parkinson sufferer can truly understand what it is like to live each day with this terrible debilitating disease that robs us of our dignity and pride. There are millions of Parkinson’s sufferers throughout the world, and we are united in our daily struggles and our deepest wishes that a cure be found quickly. I have been given the opportunity of helping others through my writing, but strangely, like a boomerang, I often receive in return support and comfort from complete strangers, who are part of the “Worldwide Parkinson Family” we find ourselves part of. I wish you all well and thanks in particular to a lady for taking the time to write to me – you made my day!

101 Uses of an i.v Stand

Having treatment at home for Gaucher disease, I require my own i.v stand on wheels, which generally one sees in hospitals. Over the years we've found this stand to be a very versatile adjustable piece of equipment, for which I have discovered many different inventive uses when not performing its appropriate task. Apart from its intended purpose of holding the voluset containing the medication and saline bag as they slowly drip their way into my veins, we have found a number of creative functions for this marvellous piece of equipment. When my daughter does the ironing, the stand is perfect for holding the shirts on their hangers next to the ironing board, and then easily wheeled into the bedroom where the shirts are put away. On a wet cold day, you’d be surprised how many items of damp laundry one can hang on an i.v stand next to the heater. With a little ingenuity and rotation from time to time, it makes the perfect clothes dryer. We once had a fun party the theme of which was ‘The Adams Family’. Once again this stand played a part as we covered it in a white sheet adding two huge black eyes transforming it into a friendly ghost which hauntingly stood in the corner for the evening. My stand caused great amusement to a friend of mine some years ago, when she came to visit as I was in the midst of piecing a quilt together, using a sewing machine. Next to the sewing machine was my faithful and versatile stand holding all the brightly coloured strips of cotton fabric by clothes pegs, waiting to be sewed into blocks, which eventually became a beautiful quilt. I may not have 101 things yet that one can do with i.v stand, but give me a little time, and I'm sure I’ll come up with some more!

Early Diagnosis

Correct and early diagnosis is very important, not only with Parkinson’s, but any disease. Often initial signs of Parkinson are very vague, few and seem of little importance. If you are aware of your body and know instinctively that something is wrong, don’t waste precious time, and do not be put off by a reluctant doctor. I was fortunate to have been diagnosed very early on, partially due to the fact that there are several family members with both Gaucher disease and Parkinson’s. Although Parkinson’s is not necessarily hereditary, in our family, there is a distinct link. Receiving such a quick diagnosis, I was able to start taking Rasagiline early on, and although I have no way of determining if I would be the same or worse today, and there are many contributing factors to take into consideration, I feel sure that early treatment has helped significantly. (I am not a doctor, merely a patient telling my own personal story.) Listen to your body, if you suspect you have Parkinson’s make sure you see a neurologist, and get a second opinion if you are not satisfied. You have to take care of YOU – for no one else will do it for you!

Body Image

The perception we have of ourselves is often quite different from what other people see. I once read that there are three perspectives:

1. What we think we look like.

2. What other people think we look like.

3. And what we really look like.

When people pass me in the street, or spot me in a café or shop, what do they actually see? If I’m sitting at a café and having a relatively good day, the medications keeping my tremors to a minimum, glancing at me you’d think there’s nothing wrong. But as soon as I get up out of my seat, it is clearly apparent to all that I am disabled, and with crutch in hand, there is no doubt. I may shuffle and move extremely slowly, stepping with care, shoulders hunched and the unmistakable shaking all give me away! However despite what you may see on the exterior, inside I am still very much ME, which probably goes unnoticed. I am young at heart, vibrant, with a dry sense of humour, positive and a bit of a chatter box. But these character traits are not seen or perceived when someone who does not know me, making hasty observations, reveals a completely different perspective. Catching a glimpse of myself in the reflection of a shop window, I can see how people that don’t know me can easily make the wrong assumption. A reporter asked me about the photograph that appears on the back cover of my book, for I look healthy, smiling and having fun whilst steering a boat. I told the reporter that this picture was a fluke; it happened to capture my essence somehow and shows how I feel inside. I have to admit that I am not steering the boat at all, I am merely posing by the helm. So you see how a picture can be misleading – how body image can send a positive or negative message.  

Red Tulip Day

The 11th of April is World Awareness Day for Parkinson's disease and the red tulip, a cheery flower, is the international symbol for Parkinson’s. There is a particular red tulip with white tips that was developed by a Dutch horticulturist who had Parkinson's and he named this lovely strain of tulip after Dr. James Parkinson, to commemorate Dr. James Parkinson’s birthday (1755 – 1824), who first documented this disease in a medical paper he presented. So please join me today in acknowledging World Parkinson’s Day, by taking a few minutes to leave a comment on this blog entry (anonymously if you wish) showing your support. Photo courtesy of MattJP.

Tomorrow’s the Day

Tomorrow is World Parkinson’s Day which is intended to raise awareness of Parkinson's disease and to spur new research and advances in treatment. It should be a day for Parkinson’s patients and their families to join forces, and bring society’s attention to a disease that is unfortunately growing in numbers yearly of patients diagnosed. Millions of people around the world struggle with this disease and are desperately waiting for a cure to be found. I am in the unusual position of having two incurable diseases, Gaucher and Parkinson, and regret that a cure for both may be some way off yet. In the meantime I am determined to remain hopeful and in good spirits, doing the best I can. The last poem in my book begins with these lines:

“Let me tell you, what I’ve planned for tomorrow,

What time I have left, won’t be spent in sorrow,

I’ll live life large as I can, the very best way,

Grab every moment, express joy each day.”

Additional strains

People, who are blessed with good health, may not realise the financial strain that chronic disease can have on a family. With a loss of income, when someone has to stop working, the burden of providing for the family is left solely on the shoulders of the healthy spouse. As if this is not enough, the problem is compounded by unforeseen additional expenses such as the many unpaid days off work that the employed spouse might take for trips to the hospital or surgery which require their presence. In addition the petrol costs, parking fees, a taxi now and then – all keep mounting up. Occasionally special equipment has to be purchased, and in our case, unable to find a disabled friendly home we have to build a house especially designed to suit my needs. This endeavour brings with it not only a huge financial burden but taxing emotional anxiety, putting great tension into an already difficult situation. Non slip tiles for the bathroom are a necessity, and are far more expensive than regular flooring. Also bars to hold onto need to be purchased and installed for safety in the bathroom. Flower beds in the garden raised to wheelchair height, add additional costs to build, using yet more materials. The list goes on and on, and money flows out of our bank account as if it’s water running down hill at great speed. One receives no help financially, or otherwise, and all these extra expenditures that have been going on for years take their toll. Anyone who is disabled, unless born with a silver spoon in their mouth, struggles to make ends meet. This is a topic most are ashamed, embarrassed and reluctant to admit or talk about. But it is a very real problem, and one that doesn't go away. 

Finding the right balance

Talking with a fellow Parkinson’s sufferer, we both agreed upon the importance of finding the right balance between accepting diagnosis along with the limitations and changes that continually manifest, whilst still maintaining cheerful and positive putting up a fight refusing Parkinson’s to rule the day. Finding this delicate balance is not easy, but we both seem to be doing the best we can. Talking with someone who is going through the same dramatic life changing events, whether it is bereavement, divorce, or in my case chronic illness, support is immensely valuable. Support groups are a very important resource, but if logistically it’s not possible to attend, this is where Internet communication saves the day. I am in contact with many PD sufferers around the world, creating a web of support. It may not be quite the same as sitting in a room with other people, but we are there for each other at the click of a mouse.

Parkinson’s Awareness Month

This month is Parkinson’s Awareness Month, and World Parkinson’s Day is on the 11th April. People all around the world are raising funds in various ways towards research which we dearly hope will eventually bring about a cure. Show your support during this month, whether it's attending an event in aid of Parkinson’s, fund raising, making a donation to the National Parkinson Foundation or to the MJF Foundation or by helping spread the word. Millions of people around the world are suffering from this degenerative terrible disease. We need to find a cure – we need your support!

Disabled friendly home

Living in a small apartment, we found ourselves thinking ahead to future years, and although not wanting to sound pessimistic, one has to be realistic. As the years pass we all grow older, therefore sensible planning is crucial making one’s home comfortable, easy to maintain, taking into consideration old age, and in our case, my physical limitations and disability. We searched for some considerable time trying to find a home that would fit all our requirements, but this was a tall order to fill. We were unable to find a home in our area that had no steps leading to the front door, a master bedroom with en-suite bathroom on the ground floor (with no bath – just an open shower stall), easy access to the garden, and hallways and doors wide enough to accommodate a wheelchair. There are also many other small details, but important when planning ahead, such as light switches that are conveniently placed at a low enough point that can be reached should one be in a wheelchair. Talking with other disabled people who have remodelled or built their homes especially designed around disability, are a fountain of good advice and information. There are also official bodies, and architects who specialise in planning living accommodation with special needs in mind. The more information and ideas you manage to glean from others will ultimately make your home as comfortable and suitable as possible.

No need to shout!

Being in a wheel chair definitely puts you in a neat pigeon hole, of unmistakably being disabled. It’s almost like having a neon sign above one’s head indicating to all and sundry that your condition is serious. On several occasions, I have had the unfortunate experience of being totally ignored whilst someone asks my husband “what would she like to drink?” almost as if I'm not here. Why not ask me, I'm right under your nose? And should I have the good fortune to be spoken to, I look in amazement when someone speaks very slowly annunciating every word carefully, speaking extra loud as if I am stupid and hard of hearing. I can assure you I am neither! I find myself in a strange but probably common situation, for in a wheelchair I am ignored, talked about in the third party and clearly labelled disabled. Yet without my wheelchair, I look like anybody else, and people don’t realise or take into consideration how serious my condition is.

I’m not Elaine from Seinfeld

I was speaking on the phone the other day, and the person on the other end couldn't hear me too well, and kept asking my name. I said “Elaine”, to which he asked “Helen?” I said “No, my name is Elaine” trying to annunciate loud and clear, but he still couldn't hear properly and asked “Eileen?” Now feeling a little frustrated and almost shouting into the phone I said “Elaine, like Elaine in Seinfeld”. As soon as I mentioned Seinfeld, he got my name right! Then came the kicker, “Do you dance like Elaine?” Almost feeling insulted I was about to say “no”, but then realised in the sitcom ‘Seinfeld’, the character ‘Elaine’ does in fact dance in a jerky, spasmodic fashion, not dissimilar to a Parkinson’s patient. My name is Elaine and yes I do dance kind of funny but I'm not the ‘Elaine’ from Seinfeld!

Invisible Chronic Illness

I've lost count of how many times people have said to me; “you don’t look disabled”. What exactly do people expect a disabled person to look like? I presume the number one criteria is being in a wheelchair – after all, if you can’t walk, then you MUST be disabled. However it is not as simple and clear cut as this, and there are many chronic patients suffering an array of diseases, where they appear like everyone else. I've said this before, but I’ll say it again: “never judge a book by its cover!” It’s not a matter of an ill person giving the false impression of being well, but the other way around, that there is a predisposed idea of what an ill person should look like. Only those diseases where visually one can see a physical disability, do people immediately acknowledge the person as being ill, since they fit neatly into their prejudiced category. But when someone for instance, looks like me, it generally confuses people’s concept of chronic disease. In their minds I shouldn't look like I do. This biased view is both irritating and frustrating, particularly when someone says to me: “but you look so well”. I wonder what I'm supposed to look like to satisfy those who do not understand. Maybe I need to wear a badge indicating how I suffer daily, am in constant discomfort, take morphine for excruciating bone pain, am tired beyond the point of exhaustion and am just about holding it together. But what really throws a spanner in the works is that I have the audacity to smile and be cheerful – this is something that most people, including doctors cannot understand.  Would you consider Asthma to be a chronic disease? Probably not, but if you take a look at a brave lady's site Invisible Chronic Illness who does not fit the mould of "looking disabled" you'll see I'm not the only one!