I am the 71 year old husband and care partner for my wife of 49 years. She will be 71 next Tuesday and that marks the 1 year time mark on her Parkinsons journey. We were in New Mexico prior to her diagnosis and she walked with me everywhere on our quest to see the sites.
Now, she has the severe Parkinsons shuffle, falls on average of once a week over the last year with five events requiring trips to the ER.
It seems to me that with the cognitive impairment and Parkinsons medicines she is worse off today than before the meds.
DatScan confirms the Parkinsons onset and the MCAT confirms the absence of Dopamine in the necessary regions of the brain.
The isolation of the COVID quarantine has her reluctant to leave the house. Multiple attempts at Physical Therapy are repeatedly interrupted with setbacks.
My question to all is: Is Carbodopa Levadopa worth the effort to administer or is a poison to the system?
Bill
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Not a poison – think of it as a supplement that replaces the missing dopamine. Dose must be adjusted properly – too much is adverse. Many people do better on time-released versions instead of immediate release.
That’s my understanding and first hand observations. The various support group’s we have been associated with express a lot of emotions for C-L treatment. However I know a list of pwp sufferers that struggle along with no medications due to disappointment with the results.
I see hundreds of veterans at the VA hospital who suffer from PTSD and no two of us take the same medications to get the same results. Therein is my wonderments of treatment protocols for Parkinsons.
Again I am the Care Partner and observer, and I realize the difficulties of understanding precisely what goes on in another persons brain.
I take Sinemet 25/100mg, 3 times a day. Dxed March '17. Have had no problems , dosage was increased from 12.5/50mg last December as my tremor was getting slightly worse. I do take CBD oil and on "Off" days ,the occasional cannabis joint.
Atypical Parkinsonian disorders are progressive diseases that present with some of the signs and symptoms of Parkinson’s disease, but that generally do not respond well to drug treatment with levodopa. They are associated with abnormal protein buildup within brain cells.
Patients with progressive supranuclear palsy (PSP) may have difficulties with eye movements, particularly when looking downward, and with balance — when descending stairs, for instance. Backward falls are common and may occur during the early course of the disease. PSP is not usually associated with tremor, unlike Parkinson’s disease.
All I can say, is that when I take my Sinemet ( C/L ), it improves my PD symptoms markedly. I’ve been on it for 5 years. If no improvement results from taking C/L, then I would think medicine, dosages, and diagnosis, needs to be analyzed by a movement disorders specialist/neurologist. Getting a second opinion, is helpful, sometimes, when one is not pleased with treatment, or diagnosis etc. I got 3 opinions, when I was diagnosed with PD, from neurologists, movement disorder specialists.
That's really interesting that she's been off it 28 days and no more falls. Her other symptoms of shuffling etc still there though? Did they disappear when she was taking c/l?
So far it is predominantly backwards. The whole process of slips, trips, and falls has been a life long challenge for her and her family, they have always joked about being the Clumsy Jones
Many PWPs are non responsive to C/L. But falling backwards is not typical of PD. In your wife’s case, I would address the diagnosis with a Movement Disorder specialist. PSP could be a possibility, or other things as well. In any case keep up the walking. I personally take C/L, diagnosed PD 2017. She’s fortunate to have an attentive caretaker. Best of luck.
Also a pretty rapid deterioration for PD, a year post dx and falling weekly.
I know some PD meds are are not advised for LBD patients. Would the scan's OP's wife has had distinguish PD from LBD? (Actually this hypothesis probably doesn't make much sense. If she has a datscan positive then youd think CL would at least be neutral).
I will definitely look at her site, quick glance at it really peaks my interest.
For all- I have 51 years continuous experience in the Aerospace World and we must alwayschave a safe aircraft to operate. Therefore “if it’s broke fix it” and this is my struggle. Parkinsons can’t be fixed so how do I get it Operationally sound to the point it’s operationally safe?
Hello! I wanted to chime in about Laurie Mischley, also. I was scared of C/L until I started her online PD school and heard her presentation on the importance of it and how to ameliorate side effects. I was particularly reassured to learn that levodopa is not a pharmacological invention (which I might fear was a poison) but an amino acid that our bodies (and some animals and plants) produce naturally. For me as for most everyone else, it's been about tinkering with the dose -- and it's definitely helped me.
my personal opinion is that the std meds with the quantity of L/C given by modern medicine (hundreds of mg vs ngr needed) with carbidopa that deplates B6 it is a poison that increase the disease causes the additional problems (Dyskinesia, cognitive problems, insomnia, impulse control disorder, wring on/off, etc) expecially on senior people (mainly due to liver weakness). it is addictive and toxic, for the liver mainly. it overloads and shuts down the internal dopamine production and it is almost impossible to get it back. There are a number of alternative solutions (gut probiotics, High Dosages of vit B6, B1, Curcuma, vit. C and D, CoQ10, Exercise, EWOT, LDN) before to start the meds but they bring no money to big-pharma so forget to get them from a neuro.
Thanks Somic I tend to agree with you and when I go to Audie Murphy VA hospital I meet veterans that are taking anywhere from 25 to 84 pills a day just to exist.
There is no quality in their lives that I can tell and that’s what I want to avoid with my wife,
My 83 year old mum experiences the same thing, diagnosed in 2018, as mild Parkinson's. Her weight has gone down to less than 40 kg (never was big, but at least around 52 kg), doctor ordered last 100mg 6 times a day + slow release for the night - she feels ill all day long, can't eat, and shakes are much worse after levodopa/carbidopa. But she again cannot give up the pills, it is a misery to watch. we're trying to reduce the dose now, and she's got horrible withdrawal symptoms.
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