Two Worlds Collide

Today I have decided I am going to blog two different days, two different experiences and two completely contrasting events that shape my life and who I am. It is a description of the ever-changing face of Parkinson's Disease and highlights the reality I live with. I do not want sympathy or pity; that is not my aim! I want to share my experiences of life and build awareness of the Disease so people start to 'get the picture' and the importance of advocacy. To start with....I will describe the ugly! Then I will close with the beautiful gift of life. 

This is the face of a young woman with Parkinson's Disease. To the untrained eye, and distant eye you would not even know it. But it is a fight she fights, mostly behind closed doors. 

If you look closely at her lips, there is the signature of Parkinson's Disease. The right side of her body  is affected mostly by PD and it means that even a smile can be crooked. The right side of her mouth moves less than the left. Not much, but she notices it all the time. Sometimes she even practises her smile in the mirror in order to correct the crooked look and then she cries. 

It was Thursday night, the night before her 33rd birthday. Unfortunately she was feeling a little stressed, overwhelmed and frustrated. A small argument with her significant other turned the night worse. Some stuttering words turned into stuttering sentences causing a reaction from her partner that flawed her. It was then she sat shaking on the edge of the bed. Detached, scared and shaking inconceivably. The tremors in these times often begin with a head shake that is described by her partner as far worse than she imagines. 

Slowly the shaking throughout her body is uncontrollable but it is almost just a part of her and who she is. She doesn't know how much she shakes. Slowly her breathing is quickening and this is the first sign of a panic attack, she doesn't realise this because it had been some time since her last attack. The thought of hurting herself becomes overwhelming. It is painful being this way. She stands, walks to the bathroom, uncertain. She wants to hurt herself to relieve the pain but looks in the mirror and cries. Her partner stands behind her, having seen the signs and holds her, slowly edging her away from the bathroom sink. She sobs and sobs uncontrollably, in his arms, still with anger all through her body. 

At this point she is walked back to her room, guided by her partner, and sits on the bed. Her mother comes in to console her and she sobs on her shoulder. A mothers love can mean the world in these moments. It was like she was once again a child. 

"I don't want to be picked on. I don't want to be sick. I don't want Parkinson's" she weeps. 

The tears scream pain and suffering as she hyperventilates. Her partner gets the paper bag that has been stored away for sometime. Not needed until now. Her lips start to tingle, she knows this feeling, she breathes into the paper bag, still sobbing. 

It is some time before she calms and lays down. Her head still shakes and now the tremors and twitches come out as grunts and noises. She shakes as her body calms knowing Parkinson's has stolen another moment. 

Happy Birthday - Friday the 13th of April

This is the face of a mother, daughter, sister, friend, aunty, teacher and child of God. 33 years young. Her life is one that is kept mostly behind closed doors as she has learnt to isolate herself because sometimes, well, life is hard. However, this is not a sad story. If you look closely you will see how happy she is. 

It was Friday the 13th, her birthday and she didn't expect that cake. Nor did she expect to feel so happy. The happiest she had felt in so long. That kind of happiness that makes you smile into the camera without trying. The happiness that naturally creates that crazy, elated feeling of being high on life. 

She woke up unsure that her birthday would be anything special. Just another year older right? She went with her daughter to the movies and sat eating popcorn and drinking pepsi. She loves the taste of cinema popcorn, even if she buys too much and inevitably eats too much. Her daughter smiles at her and they complain about how cold they are but they are happy as they watch a movie together. She fidgets a little but she is free. 

Later that day she goes to dinner with her family somewhat disappointed for not receiving a card from Rhyl. She was ecstatic when her daughter gave her the card she had made earlier that day. For 13, this girl can draw and her anime style is something her mother is proud of. It is a talent they share together. However, where was the card from Halli or Rhyl? 

As they sat and ordered dinner as a family, she jokes around about being so special. This is her day. She is given gifts and cards and feels like a princess. With a wine in hand she says "Cheers, big ears, here is to the birthday girl. I even sung happy birthday to myself today," and her daughter laughs as she recalls the drive in the car. Mum was singing happy birthday to herself.

She puts on her beautiful earrings with the help of her daughter and her ring that fits perfectly, and sips on that one wine that she only drinks on special occasions. This was a special occasion. It was her birthday after all. They eat, they laugh, the kids fight, they laugh, they leave and go home.

It was then she chose another wine and to her surprise she is presented with a cute, white chocolate, mud cake. Happy Birthday is sung with some hesitation from the older children but she still feels special. Appreciated. Loved. Happy. She cannot feel a time when she was happier because right now she is feeling it. Now she is the happiest she has felt in some time and she knows that these are the moments that will save her from Parkinson's Disease. Right now she does not have PD. Right now she is free!

Mum and I

Halli and I

Jack and I 

Rhyl and I

The boys and I - Sam hates photos

Sharing My Diagnosis

Recently I shared my diagnosis on a Parkinson's website and I am going to share it here. If you are interested have a read and for those close friends of mine on the South Coast, I am sure you remember where it all started!

I was 29 when I had my fourth child. A beautiful baby girl! We didn't know then what we obviously know now but my life was changing physically and mentally.

I started to suffer from severe sleep episodes where I would feel like I was being attacked, strangled, twisted and haunted. I would get up and scream at nothing, kick, punch, fight and cry in fear. I would do anything from wandering the house to kicking and punching my partner and rolling around in the bed as he would patiently sit on me and pray. He was very frightened.

It took around a year before I got treatement for the sleep disorder and by this point both my partner and I were suffering! I was suffering insomnia in between periods of the above and my partner was up and down with me almost everynight. It got to the point where I was threatening him in my sleep because I thought he was my tormentor. Even if I wasn't suffering from some intensely vivid experiences I got up and down and woke regularly on and off. My partner was suffering migraines and we knew it was time to see a specialist. I didn't want any medications that would put me to sleep as I feared it, however my specialist indicated that I could no longer go on this way and I surrendered. He called it 'deep sleep parasomnias and REM sleep disorder' but said either way they were treated the same and were similar. I was put on clonazepam 0.5mg which was increased to 1mg with the threat of tranquilisers if the medication did not work. We got some relief some months on and I am much better these days... But little did I know this was the beginning of a much bigger monster! Later my neurologist would make the link.

When I started to twitch on my right side my GP said to me 'Do you have Parkinson's Disease in the family?' I was 30 now. It was a bit frightening hearing him say that. He sent me to the first neurologist who knew something was amiss but things didn't add up to it being essential tremor, however, he said it was either PD or ET and sent me off telling me time would tell.

I then moved 6 hours away from Sydney and saw the next neurologist after my new GP confidently said I had Parkinson's Disease. I now had a significant tremor on my right side with some minor slowing, some occasional freezing and some very minor speech problems. Being now 31, the neurologist was reluctant to diagnose me and said it was probably PTSD and to see a psychologist for stress. I thought GREAT! But alarm bells should have been ringing because he said he was making appointments for me to see the head of Neurology at Westmead Hospital - a specialist in movement disorders. He told me he would make all the arrangements and I would just need to go when they told me to go.

I did and was told I had 'parkinsonism' at the age now of 32. I had extensive testing done that revealed I also have a carvernoma in my brain (not related), an autoimmune thyroid disease (not related) and there was no other cause that they could identify causing the parkinsonism, so I was diagnosed with Young Onset Parkinson's Disease and put on madopar. My neurologist has told me I have a 1 in a million chance of it being 'Dopa-Responsive Dystonia' but not to get my hopes up. So here I am, 32 with PD. I have been on meds now for 5 months with positive results. My future is as unknown as everyones here but I am going to do all I can to fight it!

My children are 15, 13, 10 and 3. They are the reason I will fight and I won't let this win. I am training to run in 'City to Surf' in Sydney to raise money for PD this year. Wish me luck because it is really hard to run when your steps are so damn small...

A Very Serious Blog

So it has been a while. Life has been hectic. Moving and Christmas flew in and out of my life like a whirlwind... here I am. Finally relaxing. Now it may sound a little crazy but this is a serious blog, about serious stuff! You may read in disbelief. You may even laugh but I am serious!

I know I tend to make some decisions quite rapidly and quickly, this I have learnt. For the most part it really does work for me! I truly believe God has designed me this way. To think quick and keep me on my toes... pow, pow! Just look at how quickly we bought a house. I had a dream (the seed was planted by my Saviour), I woke up, we got a house loan, picked a house and were in within 2 months. So today I decided...

What I hear you so eagerly ask? Here is a clue. I went out and purchased a good pair of Asic shoes. I am going to start jogging again with my boy Jack (who I imagine will make me look very old and unco). I loved jogging going back ummm maybe 2, 3, 5 years ago. Five actually. And I am going to do it again! If you think this is a crazy idea having PD and jogging, too bad! You can laugh when I trip. For others that don't get that, well you may not see the symptoms I suffer but there are a few things that could mean jogging could be classified as an 'extreme sport' for me. I trust God will gladly support each step I take and build me up.

Where is this leading to? I really want to do it. I enjoy the pain. I need to fight PD by punching it in the face and saying take that. So I am doing this with God by my side, or stride. And I have set myself a really scary challenge. I want to participate in a fundraising run to raise money for Parkinson's Disease Research. I know I can do it. So when I am asking for sponsors or donations, do not be surprised. Save your pennies people because it would be a dream of mine to contribute donations to research. I do hate asking for money off people and I am no good at it but I am praying about this one baby.

Here I am. Ready to take the next step in a new chapter of my life. When I am running can you cheer me on?

I am hoping to join Team Fox and the Shake It Up Foundation... keep an eye out. 

http://www.shakeitup.org.au/ 

Don't got Dopamine!

So this is my journey and with you I am sharing. Yesterday we travelled to Sydney again and saw the neurologist. It always great to see Dr. Fung as he is genuine, honest, kind and most importantly knowledgeable. One of the best doctors I have met.

Overall the appointment went really well and he has this way of convincing us that everything is going to be just fine. So optimistic! Where do I start? 

It has been around 4 months on medication now called Madopar (levodopa). This medication replaces the lack of dopamine my brain produces. After 4 months the doctor took me into his office and did his round of tests again. I always feel like such a test 'dummy' because he always seems to get away with recording me! And I always seem to make mistakes because of this, hence the wording test 'dummy.' I could actually see the elation in his face when he could see the significant improvements I had made all round. Undoubtedly impressed with how clever I am! I did not fail the tests miserably. I could do them. Awesome! I couldn't completely believe it myself. 

So where does it leave us? I can answer that however, there is always a grey area. Dr. Fung said I continue on the medication as is. It is a fairly low dose. He has decided he would like to seek research funding to complete genetic testing on me. It could possibly reveal the source of my Parkinson's which I will explain in a moment. At the end of the consultation he said, with great optimism, that I will continue to do well. That he is to do the worrying while I do the living! I agreed quite happily to this exchange. 

To give you further insight he revealed that one of the markers for what is called 'dopamine responsive dystonia' was evident in my lumbar puncture. I am low in some sort of chemical in my brain that converts dopamine from food, however the other marker (that should have been low for DRD) was normal. What does it mean? It means I am not to get my hopes up however, I have a slim, very slim chance this still could be the above and I would respond much better to treatment. Do you want to know how slim? A one in a million possibility of it being dopamine responsive dystonia... very rare! I am serious. They are the figures he gave us. I said it was slim right? However genetic testing could reveal if I have the mutant gene. Regardless, treatment is the same but Dr. Fung does not want us to get our hopes up. Genetic testing could also reveal if I have a genetic form of Parkinson's Disease which again is slower progressing. So the push is for genetic testing... more poking and prodding.

Ultimately, the diagnosis has not changed but there is hope no matter what the outcome. He is confident I will do well with treatment and medications. He wants me to LIVE and not worry about my future as that is what he is there for. If any problems arise we will tackle them head on and hopefully I will be part of the research that may one day find a cure.

Am I happy I have Parkinson's Disease? No. But how great is it that God placed me in the hands of the best care. Will I be anxious? No because the Lord says 'do no be anxious about anything.' Will I keep living? Yes... and I am not going to let this stop me. But here I am. Clearly lacking dopamine, but here I am optimistic my future is a good one. What a great doctor to allow me to visualise that. And here I am knowing full well I can trust in him. 

Maybe?

I do not think many people understand that Parkinson's Disease is a disease in the brain. A brain disease. So in saying this it affects many areas of my life and well-being. I manage very well but there are some things beyond my control and some things I have to work on daily. And it is going to get WORSE and I have to live with knowing that and so do other patients.

If my thoughts are altered, it is PD, if I am down and out, it is PD, if my speech is not clear/slurred or I stumble on a word I once said fluently, it is PD, or I am slower, it is PD, if I run around crazy at night, It is PD, it is my brain that is not functioning like it should and it is not by choice. It is Parkinson's Disease, a brain disease and now I know what I am fighting I am better equipped to fight, right? However, it is hard work getting all these things right and without medication I wouldn't do a really good job at all. In fact it is like multi-tasking all the time!

My opinion is that it is really hard for people to understand, even those close to me will be challenged. How can you completely fault myself or them? If you do not understand something, how can you empathise? How can you really think you know me? How at all can you ever imagine what it feels like to be like this? And how can you even imagine what is racing though my mind? Making assumptions I think is going to be another challenge for myself and others. Assuming either I cannot do something or I can and I am choosing not to do it right. Oh how I hate assumptions. Assumptions are evil!

My question is... how can you treat me like I am incompetent or unable to make decisions myself? I am still very human and I still want control in my life. I am not completely hopeless but yes I do suffer... I cannot imagine people who do not have PD could ever know what this crap feels like? and I would never wish it on anyone. In fact, I pray for all those suffering at the hands of this disease and pray that research will find a cure. IT IS NOT FAIR and IT IS BEYOND MY CONTROL... but I am human.

So today I am writing this rant because if you know me, love me and care for me, I want you try and understand this disease and maybe then you will better understand what is happening. When I am not speaking or my speech is mumbled, you will know why. You won't question when I stop and freeze or fumble. You won't question the lengthy gaze or slow response. Thank goodness for medications though because many of you don't see this!

Let me be me but try and understand this IS ultimately a BRAIN DISEASE. Imagine something pulling at the strings in your brain messing you around? How would that feel? I could tell you but I guess from reading this blog you may actually be starting to imagine... just maybe?

Living With Extremes

I have to admit I experience extreme emotions. It is part of who I am and what I have become. I do not mind so much anymore because extreme happiness is awesome. It is the other end that isn't fun! However I have some great energy in me that can do wonderful things... I just have to put my mind to it.

These days I manage better than ever before and I thank my psychologist for that. And no he did not use traditional methods, he used logosynthesis. Getting in touch with the essence of who you are and your true potential. Powerful stuff! I suggest you check it out.

The reason I am blogging today is because I am experiencing both happiness, elation, excitement for life and fear, pain and worry. Let me explain....

I am really happy. We are packing, moving. Moving into our home! I am doing well at work with many options around me. Medications are working for me. You could almost be fooled into thinking there is nothing wrong with me. Awesome huh? I love being around my family. I am thinking about all good things that have happened in my life. I am listening to music that brings back great memories. My children are beautiful. I just feel crazy on happy!

On the other hand some of the songs make me think about other things. Now don't think too hard about the following, I am just sharing some real fears I have. They are not hurting me today but I was thinking. I take 35 tablets a week. A cocktail of pills to manage a sleep disorder, Parkinson's and anxiety and I am asthmatic. I sometimes get scared my body will give up fighting on me. That I won't wake up one day. I guess I have had a fear of death for many years, however, I do not let it control me anymore. So with all this going on... I was thinking about the songs I would want at my funeral and should we have a plan for that dreaded word...starting with 'd' if you get my drift?

I guess you could say fear still does control me a little, but I am fine. Rhyl still has to manage some episodes at night, hence my fear. For instance he said I had an asthma attack the other night. I have no recollection of this... SCARY. Why is it I am crazy at night and I cannot remember it? So freaky to think your brain can control you in ways you couldn't even imagine. We deal with things daily and Rhyl and Mum are great support. What would I do without them? I don't think I am alone in having extreme emotions but do people talk about it?

So in this 'Mad World' we live in, it is easy to feel such highs and lows but I am thankful to say that the highs are finally starting to take over the lows and I am learning to manage. There is still so much I want to achieve... and I say I am a fighter, I just hope my body is happy with that!!! I will fight and I think I need some people by my side. I am slowly meeting people on a similar walk to me who are fighting too. They are inspirational!

So I think next week I will ring up Team Fox Australia. They asked me to contact them and tell them my story. Whatever I can do to help find a cure, count me in. But in the meantime that exercise bike is calling...it is calling BAD. I need to start looking after me!

So the saying goes...

So the saying goes 'I have never felt so alone' however, generally speaking the people who say it have felt many alone moments! I am one of them. 

I am not sure what sets me apart from others but I often have these moments. In a world full of buzz and busy how can one be alone? Yet here I am sitting in front of my computer, having had tears roll down my face on and off since last night, I feel so alone. 

I journal the good, bad and ugly so I can reflect! I hate feeling this way and the sadness just oozes out of me. Even worse, it seems that no-one gets it. No-one knows how deep this pain is and how hard it is to fight. I think my Mum certainly tries. These moments however, are becoming further apart which is a blessing. 

I am literally alone. Rhyl does not want to have anything to do with me right now. I am frightened he no longer wants me? Is the pressure too much? I am not a burden by any means but I obviously carry a painful disease that scares the living lights out of me and him. He does not seem interested and is avoiding me like a plague has hit. He is not normally like this but we did have a disagreement last night however, it seems like we are worlds apart. I cry out to God. I depend upon him but why this pain? 

Frightened Eyes

I looked in the mirror last night as I cried and cried. I watched the wretched facial expression and cried even more. I see things others don't and I feel things others don't. So much pain and anger when I look at that face. I notice the right side of my face has less movement. It is slower than the left. It cannot keep up with the left and if I try to smile it can be crooked! It doesn't move so much. I wanted to rip this face away. The right side of my body is affected by the Parkinson's Disease. No one else would notice this in my face but I see it. 

So here I sit alone and isolated. There are a million thoughts swimming through my head, most unpleasant. Last night and this morning have been particularly bad... but hey I am crazy right? The funny thing is no-one would know to look at me that my body is scarred with so much hurt and pain. This is where the black veil secretly hides a part of me that nobody knows much about...