Eight months into good heart recovery and then , surprise surprise, hello Parkinsons! How does one affect the other?

[ramotswe]

Have any of you experienced both? I doubt it's good news, I imagine a battle between my recovery - very good so far - and PD. With 2 new valves an Atriclip and a CABG, I was told to expect 18months for recovery (thats confirmed in scientific papers) so I'm wondering who's the hare and who - or what - is the tortoise? Help!

[aspergerian13]

I have both. The underlying process may be aspects of dysautonomia.

[ramotswe in reply to aspergerian13]

Thank you for responding so quickly. What is dysautonomia and how do you live with it?

[aspergerian13 in reply to ramotswe]

Very complex. Use google as a medical dictionary. Disorders of the ANS are instructive . Search for dysautonomia in this list. Many postings.

[Hikoi in reply to ramotswe]

A simplied non scary explanation.

epda.eu.com/about-parkinson...

[Parkie- in reply to Hikoi]

Very interesting link:

"Scientists now recognise that many medications used to treat Parkinson’s can affect the ANS and so make symptoms worse"

[ramotswe in reply to Parkie-]

Very interesting. Take a pill, get iatrogenic illness and so it goes.

[Hikoi in reply to Parkie-]

Yes. It also says autonomic dysfunction can be present before becoming symptomatic (pre diagnosis?. )

“Autonomic dysfunction often occurs in Parkinson’s due to the loss of dopamine-producing cells and the presence of microscopic protein deposits called Lewy bodies in the brain. As a result, a number of non-motor symptoms may be experienced. Research suggests that the peripheral nervous system may be affected long before such symptoms appear.”

[ramotswe in reply to Hikoi]

Thankyou. Fascinating - each body is like a different country and with so many variable responses. Reading it was a bit scary actually, what was not on the list ! Then again depression, even pain perhaps etc could be caused by knowing you you have PD+......I shall think on. The meds I've researched look as bad as the illness, is there anything going for them that.s not just holding back the inevitable? Meanwhile I'm walking walking walking - very badly, and accepting every day

Thankyou again Hikoi

[Hikoi in reply to ramotswe]

“. The meds I've researched look as bad as the illness, is there anything going for them that.s not just holding back the inevitable?”

Well if you believe J Pepper with his essential tremor he says no though he was 10 years on meds. He doesnt appear to have had any significant side effects. You could always follow his lead and try them for 10 years!

[ramotswe in reply to Hikoi]

From my reading Norman Doidge on John Pepper I recall that he took MOA oxidase inhibitors (are you there John?). Do you know anything about them?

[Hikoi in reply to ramotswe]

Yes, they are antidepressants that were found to have a very mild effect on PD. I dont believe JP has Parkinsons so I will not write more if you are asking him.

[ramotswe in reply to Hikoi]

That's fine by me. I'm just interested in the meds available for PD - MOA inhibitors are probably not the only meds which have a questionable effect! On we go ..

[Jana86]

I also have both. In my case, bradykinesia came first after an accident in which my lung collapsed, docs discovered my heart stopping for a second or two in the ER. At first, the docs thought it was from trauma, but as time went on, the conditioned worsened and I received a pacemaker. 12 days later I had a bowel blockage and required major surgery...almost died. A few months later, my left hand started shaking and PD was diagnosed. That was 7 years ago. The only suggestion of linkage in terms of cause was from a neuro who said that the trauma of injury and surgery could have brought on the PD sooner than it might have otherwise appeared. (He believed I had had PD for at least 10 years). I was 65 at the time of diagnosis.

I have had continuing development in both. I now have afib and, as a result, they found a prolapsed atrial valve last year (not severe enough to fix). My PD is tremor dominant and I struggle with that. I find Sinemet to be minimally effective.

Re: recovery. Both the heart issues and PD (re quality of life and progression, not cure) are helped greatly by attention to diet, adequate sleep, and lots of exercise. At least, I have found that to be true and, as to advice, I suggest you put your attention there.

I am in the best physical shape of my life, and have, I think, finally learned how to care for myself. I am retired, live with my husband of 40 years, and enjoy our three grown children and their families (5 so far).

Of course, I don't like any of it and would wish to be healthier and less focused on centering my life on managing chronic illness, but both of these chronic conditions give us the gift of time with those we love so I try to be grateful (not always...some days I am just angry, but I try,)

[ramotswe in reply to Jana86]

You've given me hope - thankyou - what merry go round!

[Jana86 in reply to ramotswe]

Take care and best wishes for a fulfilling life.

[Carolbren11]

I discovered I was dropping in blood sugar thus racing heart beat. Hypoglycemia

[ramotswe in reply to Carolbren11]

How did you resolve the blood sugar problem?

[Carolbren11 in reply to ramotswe]

I’m not diebetic but I monitor my insulin. Need to follow a high protein low sugar diet.

[BlueHawaii]

I had 2 stents in May 2012, and in Sept of 2012 diagnosed with PD. My neurologist said, however, that the first diagnosis a few years earlier of essential tremor by my primary care physician was not correct. That all along it was just PD.

[ramotswe in reply to BlueHawaii]

That was my experience too! But I colluded in it. Denial as Bill Clinton said is not just a river in Egypt. I imagine it's quite prevalent with many gruesome illnesses because it helps.

[Sapeye2020 in reply to ramotswe]

I am similar to you ... PD first and then a double CBGa year later.

It took me 2 years to really.really feel I was back to feeling NORMAL body wise. I am a swimmer and it took the 2 years to swim 1 km back stroke (my slowest stroke) in under 30 minutes, non stop. From that point I either added more distance or shortened the time. I have found that when the 'energy' is waning, one has to have the mind to go faster or pull harder. Another of my self talk is to tell self... ''no problem , you have done this before, so you can do it again. Mind over body and perseverance

Then there is all the reading and learning needed to become your best source on your PD. Why you? Because you have a designer disease and only you can know it.

best of luck finding your answer.

[ramotswe in reply to Sapeye2020]

That's very encouraging - and well done you.