Just wondered what I need...More help for my Husband!!!....

It's been a while since I updated here; which, is I suppose, a direct reflection of my life at the moment and more obviously, my perceived impression of the 'progress' of Parkinson's Disease in my life.

For several months now,I have been all but bed-ridden. This has been partly self imposed, in as much as I am now suffering from nerve damage, which has badly affected my balance, to the point, that I fell and broke my wrist on my last birthday.

This left not just myself doubtful as to my safety, but also my family, who it seems, would prefer I not attempt my daily routine. Coupled with winter temperatures this has severely diminished my participation in life in general.

It's a frustrating position to be in, as I have always been a willing Participator in life - and this goes directly against my extroverted nature.

I have also noticed that my speech is more often affected & this is probably the one thing that annoys, devastates my confidence, embarrasses & isolates me the most.

I find it increasingly difficult to make myself heard & understood even with my family - that are clearly becoming weary of the daily requests for assistance & upkeep of my care.

For me I suppose, the loss/change of my family relationships is easily the saddest & most challenging issue I must face. Over the past 6-8 months I have observed several changes emerging from my relationships.

Although I continue to try to not be overly demanding or needy -- and am mostly successful at appearing upbeat & cheerful, this is doing little, if anything to strengthen or improve the attitudes, that have begun to emerge understandably, from my loved ones.

Due to the nature of the topic I am currently discussing, I feel that is imperative to me that, the reader understands the context of my current psychological state.

I am aware that one of the issues that can be faced with Parkinson's Disease, can be psychological, however I wish to assure this is NOT the case with me, at this time. I am quite lucid & in NO WAY, believe my family wish to harm or hurt me physically or emotionally. At least not intentionally.

So, to make myself clear, the context of this discussion should be taken entirely from an analytic, rather than emotional view point.

The behaviors I refer to are, I believe, natural and my best description of what I observe with those that care for me is 'impatient'.

I consider this to be a normal response, under the circumstances as I must be extremely taxing to live with. Whilst I am lucid, I do not always appear so and when I sense the increasing frustration & impatience of my loved ones toward me/disease. I would be lying if I said that it doesn't hurt. I try not to take it personally, but after all, I am a woman & have my own set of sensitive areas.

Interestingly, many of these areas are the ones that being are being directly effected.

I dislike the inference that my mental capabilities are depleted. I am aware that when there are fluctuations with my medications that there are indeed times when my 'problem solving' abilities are challenged and this is directly controlled by my physical 'on/off' state.


On a more personal level,I am incredibly blessed to have a wonderfully supportive Husband & Carer, and this is the relationship I most resent this pointless disease intruding upon.

Lately, more often than not we seem to somehow be 'out of step' with each other eg: When I am awake & "ON" my husband is either absent, busy with household chores & duties or sleeping exhaustedly, after a stressful day of coping with the daily grind of maintaining the status quo of a large, blended & extended family unit.

At this point in the discussion,I am declaring a womanly mood swing and the following (until I move the Goal Posts again) should be understood in an emotional, rather than analytical perspective.

I am amazed at how loyally and selflessly he goes about the daily, mostly boring or unpleasant duties attached mainly to my care. I have watched this man, over the past 18yrs of our 30yr relationship endure endless days & nights tolerating, understanding empathising and struggling to keep his poor overwhelmed mind steady for his family.

All of this he manages to do without assistance from anyone & the diligent, love and care he shows for our children and many others - not our own,is the most remarkable example of this extremely stoic and gentle man.

It truly tears my soul to shreds to see him lost,bored and unhappy with his life, because of my disease.

It is a cruel irony indeed that deems it somehow necessary for the one person in my life that I would gladly do anything to make his existence a happy one, can for now (and sometimes feels like forever) only offer a lifestyle that is boring & depressing for him.

I watch his brave face as he watches me battle this stupid, soul destroying, disease. Without his loyalty and love I would be lost and most certainly be residing in my 40's in a Nursing Home.

I am now at the point where I am really beginning to mourn what is lost to us in life as a very happily married couple.

Obviously, most couples would claim a deep and abiding love for each other & in this, they can share and love a life together.


It is the small, simple things I am missing the most. The cosy chats, the comfortable and comforting embraces etc. Because we are so close, I will very Proudly say; that our relationship is truly 'above' most others.

I am aware that this is perhaps a brazen and immodest claim - but it is true nonetheless. We are 'True Soul mates', we are unbelievably compatible and absolute Best Friends and obviously, devoted lovers.

During our 30 or so years together we can count on one hand the number of times we have briefly 'fallen out' with each other & I can honestly say that my love & adoration of THE MOST remarkable man I have EVER & will EVER meet just continues to grow ever deeper & ever stronger........

Now, I guess, I have no choice but to thank my lucky stars for my WONDERFUL Husband, hope he has the strength, stamina & desire to continue whatever life we can salvage together & I'd just love to start stamping my feet at the 'Will of Heaven' to hurry up & provide not just a cure for Parkinson's Disease but to also restore to us the amazingly wonderful & beautiful Journey we have so enjoyed sharing.

B & B?...or is it B B & B? A Rating Guide for Hospitals?

I am now in my third hospital in the past two months, and have had to once again, be almost completely separated from my family and travel interstate to Melbourne to seek treatment and rehabilitation. The like of which, is simply nowhere to be found in N.S.W. to my knowledge - and if it is, I would be doubly appalled to have not been informed by medical professionals in that state.

As I have expressed in earlier posts, the day cannot come soon enough for me, when the Australian Health Care System comes under Federal Government control and basic standards, guidelines and patient handling strategies become unified and funded.

Because of my condition and because this is my third hospital transfer I am beginning to feel that perhaps I could 'rate' different hospitals; like a seasoned traveler might 'rate' Bed & Breakfast accommodation. Only in this instance, the criteria would not of course be simply B & B (Bed & Breakfast) but rather B B & B (Beds, Budgets & Bureaucrats).

It seems to me that EVERY Hospital, regardless of size or geographic location, is bound by these three constraints, and probably always will be.

However, each institution has it's own regulatory body or overseeing auxiliary of some kind, and it is largely the financial decisions made by these officials that determine in which way a Hospitals' financial resources are to be spent.

Sometimes, watching staff struggle to keep nursing and ward standards acceptable, I have often wondered if anyone on the given institutions' financial committee has ever been, or had a relative as a patient in their facility.

Needless to say, that in my experience, Hospitals here in Australia seem to deliver very different outcomes on many different levels. And so, the rating begins........watch this space for further updates on the B.B&B (Beds, Budgets & Bureaucrats) Rating Guide.

Dungog Hospital Rocks!!!

There is a small Community Hospital on a beautiful hillside in a quaint Country Town in New South Wales.

This little Hospital is 100yrs old and is not resourced with all the latest technology. It is not heavily funded and I suspect, runs on a 'shoestring' budget.

However, what it does have are qualities that in all probability cannot be bought and paid for and there are no bureaucrats in the world that could alter the "Heart" of this place.

This little Hospital is meticulously clean, beautifully and lovingly maintained and employs a local staff that include; Ancillary, Domestic, Kitchen, Grounds, Maintenance,Nurses and at the moment one very overworked GP.

Although this Hospital seemingly lacks many of the 'advantages' that other, larger and more generously funded Health Care facilities in the area enjoy, the standard of Care is probably one of the highest a patient could wish for or expect in Australia.

It is a shame that over the years various governments have seen fit to erode the funding of this much needed rural community resource. Up until 30yrs ago Women were still able to have their Babies here and all kinds of other surgical and non-surgical procedures were carried out. Very advantageous for the local Community and I would suggest would be financially prudent for Local, State & Federal funding.

Now, instead of a Hospital facility that is full to capacity dealing with the health issues of a vibrant local community, we now have a quaint building, with Staff who are doing more than their level best to provide what services they can.

Patients and their loved ones are now forced to drive a 60km or more round trip on dangerous and badly maintained roads to access major health care and maintain visits. The only access to other local hospitals is by private transport, there are no public transport options available so families have the added pressure of increased fuel costs and the ridiculous but ever present imposition of Parking Fees.
Apparently,the community is expected to take solace in the provision of a Helipad so patients can be transported to 'Major' Hospitals quickly.

I suggest this is a case of false economy that seems endemic in our public health system.

However, my B,B&B(Budgets,Beds & Bureaucrats)rating for this Hospital is 9/10. Well done to the caring, committed staff and an untiring Hospital auxiliary.

Is It Negligence or just bad planning?

Back in Hospital and I'm not sure if I should be grateful or angry.

About 8 weeks ago the supply of the 'slow' or 'controlled' release drug that I have been taking for over 10yrs and therefore, am dependent upon, ceased to be available.

There was no real warning to Patients, Doctors or Pharmacists and the huge multinational pharmaceutical company, responsible for production, apparently has no 'duty of care' to ensure supply and failed to stockpile
the drug even though it will be over 12 months before stocks become available.

So, there is now a world-wide shortage and obviously many thousands of lives are being affected. Including myself & my family.

For me, it has been a major physical setback. After all the years of effort, rehabilitation and enjoying a comparatively restored quality of life and personal independence, I have, over the past 8 weeks, succumbed to being once again unable to self-care which indirectly led to my acquiring impetigo and then an alarming infestation of head-lice. Coupled with the decrease in medication has rendered me non-ambulant, unable to utilise my hands for small motor skills, a shaven head & an unnecessary amount of pain!

For my poor family, it has obviously had an enormous impact.

Not only have they once again had to helplessly witness my decline, but are now faced with ongoing hospital visits and have now come under the scrutiny of health workers as to their competence in caring for me.

Soul destroying for such a totally devoted and loving family unit, who simply want their Mum back home.

The unnecessary pressure this places on my ever loving, devoted, patient, kind Husband is taking it's daily toll - this I can see. In turn, this is extremely distressing for me. Being separated from my Husband & children for an extended period is stressful in itself, however, the question arises again............who cares for the carers?

It seems that once again, I must re-learn old skills, lay down new neural pathways, be homesick and hope above all that my dear Husband and family can remain intact whilst I endure these necessary but agonising steps.

Healing Ceremony (Adoption Issues)

http://www.smh.com.au/national/rees-apologises-at-healing-ceremony-20090919-fvv7.html


This was a special day for the many people who attended this event - my Brother and I included.

We were both 'State Wards', placed in the same orphanage but sadly seperated and placed into different foster homes. Unfortunately, the placement for my brother was not successful and he was moved to a boys home at the age of seven. He spent a miserable childhood at the hands of uncaring and often times criminal adults.

As I attended this ceremony with my Brother, and the function at Governnment House afterward it obvious that many people had been deeply affected and that this event was clealy a stepping stone to heal wounds long ago inflicted and hopefully resolved in the near future by some. Sadly, there were stories and reminicinces on that day that bear wounds, and scares so deep that not even time nor kind words will heal.

I was amazed at my own depth of feelings and realised that there were many life long issues that efffected me that I had never been aware of until I participipated in this emotive day .

Parkinson's Disease Speech Issues (Dysarthria)

Here at the Kingston Centre, and because of the 'whole team' approach, this visit ,I have had access to a truly wonderful Speech Pathology/therapy team.

Although I've had PD for a number of years, and it has been apparent to my friends and glaringly obvious to my family my speech has begun to be very badly affected. This has been an embarrassing and depressing decline that I was beginning to feel I had no control of and that this capacity was one I was sure to be losing in the near future...

Now I know different!! The symptom even has a name; Dysarthria. Common speech characteristics in PD patients can include: A soft voice, a husky,rough or breathy sounding voice, talking too fast, stuttering and slurring. All these symptoms I have suffered.

As a young PD sufferer it is incredibly embarrassing and soul destroying to lose the facility of speech. With the above symptoms, to those who do not know me, I appear drunk or on some mind altering drug. Coupled with loss of balance etc. the picture to the onlooker is complete.

It has occurred to me oftentimes to have a tee-shirt printed that states: 'I'M NOT DRUNK, I'M NOT ON DRUGS - I JUST HAVE PARKINSON'S DISEASE!'

For my poor family, they have had to endure the stares and judgements of strangers, as well as the frustration of being unable to hear or understand me whilst trying to communicate with them.

Again, I praise the "Kingston Centre's" holistic whole team approach and it seems to me that what is needed is not just Speech Therapy - as useful as that is, but rather, Speech Pathology to aid in the rehabilitation of throat and muscle chords in PD sufferers, as swallowing mechanisms are also affected with the progression of this disease.

With a few simple techniques and vocal exercises it is possible for PD patients the find their "LOUD VOICE" again and so improve the quality of life and once again enjoy a good chat with family and friends, instead of being or feeling like a dimwitted participant as this disease progresses.

This has also reminded me that whilst PD may affect my brain, it does NOT affect my mind even if this is impression to those who are unaware. Moreover, I intend to return home and practice my newly re-learned skills and vocal exercises.

So, the next time I feel tongue-tired, stutter or slur my words, I will stop, take a deep breath, slow down my thought processes, tap-out long syllabled words and once again take control over a small but vital part of my life whilst acknowledging that there is not much I can do to stop the progression of this disease upon other physical aspects of my life. All part of the journey I guess!

Drawings - another gift found at Kingston...

Kingston Centre Melbourne Australia

Kingston Centre Melbourne Australia

Kingston Centre Melbourne Australia

IN HOSPITAL 09

IN THE HOSPITAL! 2009


K I N G S T O N

Kind

Intuitive

Nurturing

Great

Soulful

Tremendous

Open

Nothing to complain of!!

My stay in this hospital has been nothing short of miraculous! Today Michael is having Brain Surgery and just like “ clock work” I received Holy Communion – typical of the loving care one receives here.

The standards of this ward are the highest in the country! Of this I am sure....I have now been receiving treatment for Parkinson's Disease for at least 10 years and in many different locations – mainly in the Hunter Valley. Sadly, the care and standards there are poles apart.

My first admittance to the Kingston Centre was 3 years ago – and upon my return most of the staff remain unchanged – so it is like a 'happy reunion' to return here.

This place is overflowing with love, compassion, care and empathy which can be only be provided in my opinion, by people who are truly dedicated to their work and their professionalism shows through, from Staff who are responsible for Domestic Duties, Clerical, Nursing – and all the way through to the Highly Trained Clinicians – not to mention the Doctors and the Professors attached to this establishment. (Even the on site op-shop has a caring volunteer staff and provides great “retail therapy”)

At every turn there is a friendly smile and as a patient I have never been made to feel as if I am a burden or a bother – which, sadly has been my experience in other institutions.

Patients here are not spoken to in a condescending manner, nor are we made to feel that we are unimportant. To the contrary; each patient is carefully handled and our emotional and spiritual needs are met readily and happily even though in essence, it is only our physical care that staff have a duty of care as an obligation.

Every patient here is clean, showered, dressed. There are no patients left sitting disheveled, bored or ignored. So from a patients perspective it is never depressing and the encouragement given speeds recovery and rehabilitation – which is the aim here.


I am sure that there are staff issues and underfunding would be incredibly distressing and frustrating for these fine Health Professionals and it seems to me almost criminal that those in control of the 'purse strings' as it were, especially Politicians do not apply the same dedication and professionalism to their highly paid vocations as those on the front line of these establishments.

To find a voice and avenue to facilitate the needs of these truly gifted and caring people is one that I feel I should explore. These guys would do it – but they are busy getting on with the 'business end' of life and need support.

It will be an interesting day when 'the powers that be' need the care of these professionals – as we all do. We are all human and each and every one of us need, at some stage of our lives access to assistance with our health care.

On the opposite end of this scale is the Health Care in

New South Wales that my Husband is currently enduring.

Why this is the case in Australia I have no idea and it seems clear that there needs to be some kind of 'National' model of standards, procedures and implementation, whether that be funding, training or otherwise to be put in place to ensure that ALL Australian citizens are getting and have access to quality health care. Needless to say, it is my opinion that the Kingston Centre should be the role model and bench mark that would set a decent standard and that whatever or whoever is responsible for the training of staff be aware and avail themselves to a visit here to get an idea of what I am attempting to express.

Going away today.......

today i am returning to the 'movement disorder cslinic' in a way i should feel happy, excited & grateful - to have access to one of only 8 beds in the country tells me that our public health system needs help & that i am very fortunate woman!!
Yet i am extremely sad and distressed as latetly i have been trying hard to hold the 'poor me's away (depression) but somehow i fear my attempts are too little - too late for my husband & kids for that matter!

I know they love me but the fact remains that the awful truth of this disease has affected my marriage so deeply that i feel incredibly hurt and scared as this is the 1st time in 28yrs of what i believed was the MOST SOLID loving relationship my poor husband who is worn thin with my daily needs and care - does not wish to travel with me today - instead i must rely on my 13yr old and the kindness of friends to get me through - & its hard to tell yourself that its all ok sometimes

Embryonic Stem Cell Support

http://www.citizensugar.com/2905321

Parkinsons Protection for Women?

If found this to be a very interesting line of research - one worth watching perhaps?
http://www.curingdeath.com/research/Naturally_produced_estrogen_may_protect_women_from_Parkinsons_disease.asp

speech

The loss of the ability to speak clearly is VERY DEPRESSING!It is also one of the most embarrassing & frustrating of all the challenges for a PD patient.

Because I am relateivly young, most people, who do not know me assume I am Drunk when my speech slurs. When my voice becomes soft and inaudible,it is most frustrating for my loved ones and I often feel that loss of speech could at times become life threatening.

I cannot begin to imagine how older PD sufferer's and their Carer's cope!

Depression Treatment

http://www.femail.com.au/depression_treatment.htm
I spend many hours alone... this means a lot of soul searching goes on and whether my mind is being eaten-up by this disease,I do not know.

I know I appear strange to even my closet beloved ones. My once graceful and easy movements are becoming more difficult and I am relying on my family to do far more than they should.

I have always been fiercely independent and it is humiliating,depressing and extremely tiring on those I love.

Today I was prescribed an anti-depressant and I intend to follow up here with the progress. My fear however is for my husband who sees ALL the pain and struggle i go through.....who cares for him? This is of great concern.

 

 

some of my drawings!

Understanding?

It is difficult for loved ones to sometimes understand the frustrations that PD brings to your life.....

Speech is affected and so it is difficult and sometimes embarrassing to express yourself. (Understanding)

Sleep patterns are affected and again it is difficult for loved ones to understand your patterns and what it is that you need from them at that time - (Understanding)

With PD it is easy to become overwhelmed with the world, life, family demands and everyday life sometimes no matter how hard we try and control it. (Understanding)

So, to anyone out there reading this who knows or loves a PD sufferer - Understanding is a wonderful gift - Yes! sometimes PD can make us seem strange and demanding but really all we need is a little understanding.....

Imagine yourself in a position where you must rely on others for your day to day existence - would you need a little understanding?

Voice of Reason?

At what point in our society did we collectively decide to hand the power over our lives to Politicians and their appointed advisory boards?

It is a sad and ridiculous situation that Australians have allowed themselves to become individually dis-empowered over issues that are personal, and life threatening.

Ethics Committees are an essential part of our Society and are generally relied upon to be the Voice of Reason when it comes to these major issues.

However, it is NOT the role of ANYONE (ethics committee member, politician, doctor, businessman, or labourer etc), to set in stone rules that are draconian or defeatest.http://www.biotechnologyonline.gov.au/human/ethicssc.cfm