Parkinsons awareness month… are we really aware ourselves??

April is Parkinsons awareness month, its a world-wide initiative to improve understanding and awareness of Parkinsons Disease. If you didn't already know it is an incurable, degenerative cruel illness, that for some slowly erases your self esteem, confidence, value, joy… amongst other things. Never mind freezing, insomnia, incontinence, pain and loss of motor functions. Its one of the most challenging conditions for both Patients and Healthcare professionals. I have had it for over 10 years now. My message this April is to all PD Patients…. whilst we are busy trying to educate everyone else I think we forget one major critical point…. most of us need to educate, enlighten and improve our own understanding. Don't you think? I do.

CHH

18 Replies

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  • i agree coleen

    it si important that we know as much as possible about these illnesses - parkinsons//psp /msa etc

    lol JIll

    :-)

  • True, also to love ourselves (more)

  • accept ourselves, value ourselves for how hard we struggle, patients and caregivers, what's called 'self-love' which is NOT narcissism or selfishness. Very true, love ourselves more. It's a work in progress, maybe?

  • Spot on... The constellation of progressing degradations that we are facing everyday is difficult for others to appreciate.

  • is it all downhill? my husband has regained ground now that he's on carbidopa/levadopa, getting physical therepy/PD rehabilitation, and we have resumed walking after a long winter. We try to get him on a plateau and hope to stay there....

  • Here in the States today I say two of articles for Parkinson's Awareness from two different points that really makes me wonder sometimes about how is are advocate. One was for Dave Parker, a former Major League Baseball player who now has PD and how he is starting a foundation to help those in need and to educate. A really good story.

    The other was WAY out of left field about, you Brits will love this, Adolph Hitler. Yes, ole Adolph they have learned now from watching old films of him and reading the diaries of his doctor had Parkinson's and had rapidly progressed by the end of the war. But, the good news was...... He was still mentally sharp and able to lead the war till the end.

    Now, I think I have read it all.

    Wayne

  • Hi Coleen. I agree with you wholeheartedly.

    There is one piece of information that patients are generally not told, when they are diagnosed and that is: If we can get into the habit of walking as fast as WE CAN for up to one hour, three times a week, the progression of our Pd will slow down, or even reverse. We will also get the benefit of improving our cardio vascular system and make ourselves more agile. We will be less likeky to fall and will need less medication. Our doctors should all tell their patients this.

    Before someone says that this has not been scientifically proven, then they should refer to the report read by Drs Beth Fisher and Michael Zigmond at the 1st World Parkinson's Congress held in Washington DC in 2006. There is a lot we can do to help ourselves, but most of it requires some effort on our part! We have a smple choice, at the very beginning and that is: We either take charge of our Pd and work at getting fitter or we abdicate our control and rely on medication and others to help us.

    Good luck with this!

    John

  • thank you for your interes for other parkinsons patients. i always read your letters and always learn from it.

  • Hin sjannie. Thanks

    John

  • I think what you are saying is . Think big , Walk faster with longer strides , sing and talk much louder think shout rather than talk Writ bigger than would be normal . I other words Exaggerate everything .

  • You are so right. There are noone who could understand the feeling inside but ourselves and beside the medication it is only we who can make the body and soul move. Movement is king. Motion & Emotion - In Balance with Parkinson's is my tribute to fellow parkies.

  • Low Dose Naltrexone Folks!

    Read about it online or in a great book called HONEST MEDICINE

  • Nordic Walking - even better. Cardiovascular effect enhanced because using arms; makes you walk upright lengthens your stride; flexes your spine. The forced pace also benefits PWP's as with cycling but I now find this a bit too much - have something akin to PMR dx. yet as well as PD . .My county council and others are sponsoring Nordic Walking for its all round health benefits. It would be nice if most neuros mentioned exercise at any time - mine has never raised the subject with me despite the fact that at 74 (female) and five years after diagnosis you would not know I had anything wrong with me except for an occasional hand tremor. I accept that I seem to have a slowly progressing PD but I do need to take 5 mg a day of sinemet plus and there's no doubt about the bog standard symptoms and dx. I am taking part in a longitudinal study of PD and there is just one question on the questionnaire I fill in. and its "did you do any exercise this week" - not how much or what. Age does not help but that just means you have to work harder at the "use it or lose it". Some exercise has got to be better than no exercise when you have a movement disorder. As the saying goes its not rocket science. Better still the evidence for exercise being neuro-protective in various neurological conditions is mounting. However, personally,I'm more encouraged by the neuro-plasticity of the brain which is now accepted to be life long and not confined to the young and feel that rehab. should be more available as per NICE guidelines to those unfortunate to have had a long wait/deterioration before the dx.decided. I strongly suspect that some PWP's have their medication raised quite unnecessarily instead of adequate physio and/or exercise..

  • I should have said the equivalent of 5 Sinemet plus 25/100 a day in my post above.- not 5 mg !!

  • My 67yr old husband has had Parkinson's disease for 7 yrs now. He was quite good up till Christmas 2013. He started to have severe pains in his back and his left leg became numb. Parkinson's affects his right leg so basically he was walking around on his hands and knees. his G.P sent for an early appointment with his PD specialist who got him into hospital via a long wait in casualty. An MRI scan later he was diagnosed with a slipped disc. A week later he was still in hospital waiting for physio!!! He was then discharged after 2 weeks, hobbling with a stick for short walks but still needed a wheelchair for longer journeys. He has now been referred for more physio but there is a 6 week waiting list. The GP now says he didn't have a slipped disc and it is due to Arthritis in his spine!!!!! He has been refused Attendance Allowance because they say "with sufficient aids he should be able to do everything for himself" when in reality at certain times during the day He can't dress himself, Have a shower, shave, walk, stand, get in or out of bed, put socks on, the list is endless. He is contesting it, but this just makes us feel like liars, frauds, scroungers,and unworthy.

    I suffer with Fibromyalgia myself and look after my 84 yr old Mum. I very rarely am able to get out to see friends.I am 55 yrs old. I was hoping to employ someone to look after them both for a few hours a week. Do these people realise how much it costs for carers these days!!!!!

  • Ten USD / hour in our area. T2746, Bless you and be it known we PWP, family and carers understand and send you our support.

  • my husband had pain in his back, shoulder/ scapula area. The Dr. did an x-ray of back and diagnosed probably arthritis. This year he's done PT rehab, including on his shoulders (which were tight). His shoulder joints are looser, there's more flexibility, and his pain is gone!!! He is 70. Diagnosed in 2007. His poster is improved, too. So don't assume this is permanent.

    I'm sorry to hear of all that you are coping with. Caregivers needs their own respite time. Try to get out, even if it's out in the sun or for a walk.

  • I surely agree that often times we think of others to the point of neglecting our on husband, wife, children and even pets. We can do only so much and I have found negative results each time I over work or work too hand or to long.

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