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.

Progression

PROGRESSION

Yep! It Sure Does!!! The passage of time with this disease is interesting to note; Whilst I have always known that Parkinsons Disease is progressive, until recently, I don't believe that I have understood this and probably don't now – living an experience is difficult to verbalise .

The things I am observing now within myself move slowly and challengingly forward. I have had this Disease nearly 17years now and medications are working up to a point. I guess I really shouldn't expect anything else, but the 'point' as it were, for me is that I expect myself to be fully functional and anything under that bench mark is unacceptable.

I have increased the Titration of my medication in an effort to prevent the sudden on/off effect. This has worked, as I said to a point.

After a relatively 'normal' day I find that sometimes and increasingly often that it can take hours to get myself into bed.

An old pattern emerges. The sudden 'off' appears – usually when I am close to achieving whatever it is I am aiming at (going to bed, putting the last dish in the dishwasher, getting into or out of the shower) etc. Once my brain starts to shut down to me, and refuses to connect with my body, it is easy and tempting to become overwhelmed by the predicament and end up feeling sorry for myself and dissolving into floods of tears. This I have learned, is no use to Man nor Beast, and it is much more productive to try and focus on being determined, not sad, and try to beat this thing, at it's own game.

Easier said than done of course. However, I have noticed, that the days when I am feeling strong, and allow myself to become more assertive toward the disease, in fact get down right angry with it, I am able to push through the obstacles and achieve what is necessary.

The process that my body undergoes during an 'off' time I find to be quite painful. As my brain shuts down and the signals between brain and body either slowly or rapidly diminish, depending on the circumstances, the rigidity that comes with this can be alarming.
When the dose is used up then I find myself completely frozen or stuck and it is frightening to have that feeling of being completely helpless
Staying emotionally centred in these times is extremely difficult, but not impossible.

I live in a small home with a large busy family. The challenges of negotiating small cramped spaces, with multiple conversations running through the background, and more often than not, being asked a question by Children or Friends as I am attempting to walk through the space without losing balance, is excellent and sometimes death defying practice for the extremely useful skill of Multi Tasking.

I am also aware that within the last 12 or so months, the way in which my speech is affected (Dysarthria) is more challenging. The difficulties with swallowing, which I had not previously encountered are now beginning to present.

Slurred speech is easlily one of the most embarrassing side-effects of this disease. It is also one of the most frustrating!

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

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!

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?