Connection between cicrulatory problems and development of PD symptoms ?
("traces of ischaemic small vessel disease" is mentioned in my notes" - I
think that means blocked blood flow)
Quoting Monika Lindqvist <[log in to unmask]>:
> Dear Diana, I am now 67 years old and was diagnosed with P about 8 yrs ago.
> > 50/200 5 times a day. I have been on the same dosages for almost 3 years
> now.
> snip
> Later that year I was hospitalized with a problem that I evidently was born
> with - a foramen in the heart that apparently did not close the way it
> should when you are born. An atrioseptal repair had to be done and it had to
> be
> done with an open heart surgery so they could close that hole which they
> called
> a gaping hole -
> which by then had caused a reversal or shunting of the blood flow in the
> heart causing a critically low oxygen contents in the blood that the heart
> sent
> to my brain and body (48% vs the 99-100 that should have come through),
>
> I imagine the reversal of flow had occurred from time to time as I recalled
> severe headaches over several years whenever I spent time at high altitudes.
> I
> had traveled to India for instance and spent considerable time high up in
> the Himalayas. So my substantia negra cells probably suffered a decline
> over
> time until I finally I realized I must have some cardiac problem, feeling
> palpitations and sudden hypertension. I went to see a doctor for an
> echocardiogram (which he did to humor me, not because he thought there was
> anything
> wrong with me, I looked too healthy to him!!) I insisted and much to his
> surprise, there it was, an atrioseptal defect!
>
> In retrospect I probably had lost enough of those precious dopamine cells
> to
> develop Parkinsons over time. As you probably know by now, there are many
> factors that hasten loss of those cells, toxins being all around us these
> days.
> Who knows why you are losing yours. But medication will help, why are
> you
> not taking them? True, I was not happy about taking medications - never
> took
> any pills until I was 60 yrs old and was started on a couple of heart
> medications to prevent atrial fibrillation because of the patch that
> irritated my
> heart's natural pacemaker, and then the Requip to stave off some of the
> symptoms of P.
>
> Anyway, I went back to work after three months and managed fairly well for
> a
> couple of years - until another snag sent me into retirement - I contracted
> mycobacterium avium complex which is a lung afflliction that is hard to get
> rid of, could be hospital or community acquired. I went to a lung hospital
> in
> Denver to seek treatment because no one knew what to do with it here in So.
> California. I took medications for 18 months to be sure it was gone. By
> then my activity level was not great and I determined to change that. My
> first
> P doctor told me not to join any Parkinsons support groups - they will
> surely
> depress the hell out of you, he said. But when I finally went to one I
> realized how lucky I was. I could still drive, I could still manage my
> household
> and all the activities of daily living and vowed to do this as long as I
> could. Yes, I realized that I could not return to work in a critical care
> area
> as stress seems to make symptoms worse but I could make my fight with
> Parkinsons my job besides becoming a full time housekeeper, gardener,
> accountant,
> cook,baker....for me and my partner, who has never made me feel less of a
> person for having Parkinsons.
>
> I corresponded with other Parkinsonians -met John Ball whose disease had
> plagued him for over 20 some years but who ran 14 marathons during those
> years
> to keep the disease at bay. Exercise, it seems, is not just a stress
> reducer,
> producing endorphins in the brain to give that feel-good sense, it helps us
> keep our muscles toned, helps us retain balance and movement and definitely
> gives a sense of achievement to the ones that keep it up. John wrote a
> book,
> Living Well, Running Hard that inspired me to get back on my bicycle and
> add
> activities that build muscle (yes, even Parkinsonians can build muscle even
> as it is a muscle wasting disease) -
>
> I participate in the Long Beach and LA bicycle marathons, riding at least
> every other day to keep in shape, sometimes just a few miles, sometimes
> long
> distances. I get on the bike even on days when my legs feel like they
> don't
> even want to get out of bed, and it is easier to ride than to walk. I see a
> movement specialist doctor who listens to me and is willing to allow me to
> experiment with my medications so that when I feel the stiffness come on
> early and
> even when it is not time to take the drug, I do and then it usually gets me
> through the rough spots and I am able to take the next dose a little later
> instead.
>
> I travel, and since all of my family live in Europe except my kids who live
> here - I go to Europe at least once a year. I just have to get up in those
> crowded planes and walk around a lot and wish I were wealthy so I could walk
> around with a little more space in first class!!
>
> The cramps are my main problem - especially mornings they are there just as
> faithfully as daylight comes.
> I am almost afraid of breaking bones in my feet as I try to 'walk out the
> cramps' on feet that twist every which way. But then they are gone, just as
> suddenly as they came and I get to morning chores, breakfast, cleaning up,
> moving lawns, chopping wood for the fireplace, gardening, a morning bike
> ride,
> meeting or corresponding with friends, taking the dog to the dogpark for
> socialization/exercise
>
> Without the drugs, I realize I could not live fully. I was hospitalized
> for
> 12 days for a twisted small intestine this past summer, and could take
> nothing by mouth, so I was without any P-meds as well, because there is no
> intravenous drugs for P yet. The cramps were relentless, the walking around
> the
> nursing station was an enormous effort. Again, I could not write, brushing
> my
> teeth was a chore, and ,just shifting my body positions in bed became very
> difficult. Back on the medications, I am back to where I was again.
>
> So, yes, even as the drug companies are most certainly to blame for the
> slow
> progress in finding a cure for the P, because they make so much money on
> controlling symptoms with all these medications, so why should they help
> finance research with their profits?? ( Requip costs over $400 dollars a
> month
> without insurance!). So imagine the drug companies' losses if a cure was
> suddenly
> found for the P today!!
>
> I hope for a cure. But in the meantime, why should I not try to live as
> full and active a life as the medications allow me?
>
> So take the drugs and feel the difference! Some days you will feel so
> normal
> that you think you no longer have the P. Other days the medications don't
> seem to do a thing for you or you get that 'between doses' low where you
> don't seem to be able to even move your feet. It may take an hour before
> they
> kick in, especially if you take your dose late.
>
> But thank God for the good days and accept the bad ones, just keep moving
> and get in touch with other Parkinsonians to keep a perspective on your
> situation. It may seem bad, but it could be worse. I get back to John Ball
> who has
> awful tremors and dyskenisea and bad cramping at times, but he keeps going
> and even heads a Team Parkinsons organization with his wife. I do not have
> the tremors and shaking, and I count my blessings every day I don't feel
> the
> effects of the disease, I have not suffered the loss of balance a lot of
> people tell me about, nor the total inability to put one foot in front of
> the
> other (freezing). I imagine all of these things may eventually happen to
> me, but
> I am 8 years into the diagnosis and today, for now, I am not losing sleep,
> nor will I allow depression to creep over me like a wet fog, attempting to
> rob
> me of my tomorrows. I live today, I make plans for the future, and as I
> read your questions I felt compelled to answer you because there is more to
> life
> than Parkinsons disease.
>
> Sincerely,
>
> Monika
>
>
>
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