I have never thought much about healthcare, medication, research and definitely not about Parkinson’s disease. Well, here I am, 48 years old, cursing myself because I may have forgotten my meds at home and I have hundreds of questions and views on research, medication and healthcare organization. I went from completely ignorant to being an expert on how a person with Parkinson’s experiences the disease.
Or is it really a disease?
Recently I helps a woman with PD who just had a DBS and was it wasn’t working properly. She was completely “frozen” to the ground, but with help she could move forward… How?
By walking consciously,
by walking in the same pace,
by walking over lines in the street,
by walking towards goals.
Then we reached a staircase and I had only heard about it before, never seen it myself.
She said: give my my bag, now I am OK. And then she literally ran up the stair!
I am not a religious person, but maybe, just maybe the person Jesus told: Take your mat and walk, had Parkinson’s!
In the case of the frozen woman I met with the DBS, she had recently had a tuning of the DBS and the technicians had made a mistake with the device, so the week after she was fine again. But even when she couldn’t walk on the ground, she could run up the stairs!
WYH?
Dalo
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I'm reading your post and thinking of all the stories I've heard and personal experiences about being able to dance but not walk, run but not walk, etc. and I started comparing it to batteries getting weak. Could it just be a matter of electrical current?
When I had an apomorphine challenge (that stuff really wears off fast) and was getting slower and slower while doing some tap tests a glass of water fell off the table and I caught it, quick as can be - I was so surprised!
I spoke to a group of researchers in a UK University, their Brain Repair Group. I explained how my condition affected me one of the seemingly contradictory effects was that when I was finding walking difficult, because either my legs wre stiff or my angle was stiff - I could always run and this was because my leg muscles, joints my body became less stiff and suddenly I was free and could move.
One of the researchers said running was controlled falling; I told him my walking was uncontrolled falling and running was controlled movement.
I am amazed that many of the people who are conducting research do not meet PLWP nor seek to understand what life is like living with Pardkinson's
I agree with you. It is so important that researchers listen to people living with the condition, recognise their priorities and respond to them - Tom Isaacs calls this the living brain bank, and this is the inspiration behind Parkinson's Movement. Q
I quote what Dr Jill Marjama-Lyons,MD {Neurologist and Medical Director Of Parkinson's Centre at the Unversity f Florida}
This is an important message .We all have to be careful as doctors,nurses,practitioners and patient nto to define or label others or ourselves by a disease.If we do this,then the disease and the sympotoms become our focus.So read,find out more about the condition,but do not make the mistake of thinking that you are your disease Iam not saying that you do not have parkinson's disease and that doesn't warrant treatment and adaptation in your life Rather if you lead a wellbalanced healthylife by attending to all your needs.physical,emotional,intellectual and spiritual-and strenghthening your connectio to others,nature and the Divine,you can achieve optimal wellness and go beyound your disease.You can learn how to cope with and rise above and beyond it rather than be consumed by it
I recently turned off my DBS Stimulator by mistake.. the effect was immediate - I was all over the place shaking all over and practically unable to stand up!
Fortunately, I managed to get hold of my neurologist and managed to turn on the device - and mercifully back to normal. it was really scary!!
Your blog has made me think again. We (CPT) are funding a study into Paradoxical Kinesis at Oxford, exactly looking into the phenomenon you experienced with the DBS lady - it would be wonderful if an override system could be created. Q
I will be completely honest but no names, no hospital names. I went through holy hell with DBS because of lack of experience on the part of the programmer, managed by my neurologist.
I can't emphasize how important your programmer is in the team. I've heard it said that any neurosurgeon worthy of the title can perform this surgery. And your neurologist is important, too. But the programmer is the one to choose with care. After 2 DBS implantations in two organs and an emerging dystonia, I finally found my current (sorry, bad pun) programmer and she is a crackerjack, absolutely dynamite.
She took a look at what had been done (over 1.5 years of trying to get the programming right (by the original group) and very professionally commented that there had been no apparent plan,and had been completely haphazard.
I spent a few days with her and she was incredible. There are 60,000 potential configurations! I now see her about once a year. My husband and I have to go on a long plane ride to see her but it is worth every penny.
If any one wants further info let me know through this forum and we can connect.
This is a very prestigious hospital, but, as my husband said, they have a weak link in this area.
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