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.

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!