Haven’t been on here in a while. Reluctantly after having symptoms for 4yrs but officially diagnosed last year aged 54 my husband started medication a year ago 25/100 carbidopa levodopa. The tremor did not get any better although feels some benefits in other ways i.e stiffness. He found that taking 3 pills a day wasn’t enough and when seeing his consultant advised him at work he is more fatigued and feels another tablet may help as he feels a boost after 30 mins taking his pill and feels it is like an adrenaline rush and he has this surge of energy for a while, although at this point I had pointed out that I have noticed his head moving side to side sometimes, his consultant said not a Parkinson symptom and to film it and bring in with me next time.His consultant agreed to try the extra pill taking him to 4 a day he said that he also wanted to see if the tremor gets better but in fact this did not make any difference, his tremor is worse and he then started bobbing his head more. So forward on 6 months later, we saw consultant again and whilst in the room he saw his head bobbing so no need to look at my video and he was fidgety, so he said that it was too much meds and as tremor no better to bring him back down to 3 a day. He thinks he may have essential tremor also but cannot add any other med as he is asthmatic. The problem is…since he has come down in dose again to 3 a day, he is still bobbing but hardly noticeable now , but has on the last 3 weeks started to hold his arm up near his armpit/chest his hand looks a little clenched and seems to happen when he takes a tablet…can someone advise what this maybe? I’ve looked at dystonia, dyskinesia but bear in mind he
has only been on meds a year not longer. His MDS is nice but he more and less said that there’s not alot else they can give him. Thing is my hubby was reluctant to start meds due to dyskinesia and doesn’t want a cocktail of drugs, it seems to be one thing after the other since taking them. He is losing so much confidence :disappointed:.

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He could talk to pd nurse and see if opicaphone or Entacapone would help these are used to make medication last longer it’s something you could ask about

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Thanks Gus we gave up on our pd nurse a year ago, she wasn’t great which was disappointing, she forgot to call on his appt dates saying she was busy even though a scheduled telephone appt, said she would ask the MDS about changing his meds and our next visit to her 3 months later she asked how his meds were …again she forgot to ask MDS… Our next visit to MDS will be 6 months although as hubby has OCD as well as asthma and anti depressants he is reluctant to add anything in as he said he doesn’t want him to be exposed to the darker side effects…which was a worry! I suppose he just has to grin and bear it now. Any ideas on the hand /arm thing…seems to happen more when he has just taken a tablet . Thanks for the reply.

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Try intermittent fasting and a keto diet . The benefits for most are huge after 3 months I believe :thinking:

It sounds like your husband’s Parkinson’s medication journey has been challenging. His symptoms haven’t improved much, and he’s experiencing side effects like tremors and head bobbing. It’s tough, especially since he was worried about taking medication in the first place.

Regarding the arm movement when he takes a tablet, it could be dystonia or dyskinesia, but it’s essential to talk to his doctor about it.

As for treatment options, his doctor might adjust his medication dosage or consider different medications. They could also explore non-drug therapies like physical therapy or even surgery in advanced cases.

It’s crucial for your husband to keep talking to his doctor about how he’s feeling and any new symptoms. Together, they can find the best way to manage his symptoms and improve his quality of life.

In terms of treatment options, his doctor may suggest adjusting his medication dosage or trying different medications altogether. There are various drugs available for Parkinson’s management, such as levodopa, dopamine agonists like pramipexole or ropinirole, MAO-B inhibitors like rasagiline or selegiline, or COMT inhibitors like entacapone. Each medication has its benefits and potential side effects, so finding the right combination is often a process of trial and error.

Additionally, non-drug therapies like physical therapy, speech therapy, and occupational therapy can complement medication management and improve overall function and quality of life. In advanced cases, surgical options like deep brain stimulation (DBS) may also be considered.

Some references that may be useful & don’t forget to look up the side effects of the antidepressant. I’ve never taken levodopa. I developed eye dystonia (blepharospasm) after an antiemetic. My head started to jerk/nod after being given antidepressants. Later I was give a neuroleptic to ‘treat’ my movement disorders. My right arm has a mind of it’s own . I live with a cocktail of tardive dystonia, tardive dyskinesia, akathisia & parkinson’s

Parkinson Disease Clinical Presentation Robert A Hauser, Updated: Jun 04, 2020
Another common dystonia in Parkinson disease is adduction of the arm and elbow, causing the hand to rest in front of the abdomen or chest.

Demystifying the Neurological Examination A demonstration and lecture given by Dr. Rick Stell 4th Australian Multi-Disciplinary Conference on Parkinson’s Disease Sept 12-14 Perth Australia 1997?

The clue as to the diagnosis of Parkinson’s disease as far as the neurologist is concerned, is that the symptoms are ‘One Sided’ or predominately ‘One Sided’.
We next have the patient stand relaxed with the arms at the side. We look for any spontaneous tremor and also for abnormal involuntary posturing of the elbow, wrist and hands.
Many patients will note that when they are walking, all the sudden the arm will come up. This is posturing, it is not moving about and they can consciously put it down but up it will come again, if they are not thinking.

Chap. 12 Involuntary movements caused by levodopa Peter A. LeWitt, Dragos Mihaila (in Drug-induced Movement Disorders Sethi K, ed. Marcel Dekker, 2004:77–109.)

. Dyskinesias can be defined as involuntary, patterned movements affecting any part of the body.
They often have a torsional or fidgeting quality.
The term chorea pertains to the dancing-like quality of these involuntary movements, while athetosis refers to twisting movements along the axis of a limb.
Sustained and abnormal postures characterize dystonia.
Dyskinesia is a more general term that can describe each of these and sometimes more unusual types of motions,
In some instance, these movements began to occur within months of starting the drug, although more commonly dyskinesias evolved only after a year or more of treatment
Another clue as to the relationship of these movements with LD therapy was their timing, which tended to coincide with the onset of antiparkinsonian benefit produced by each dose of LD.

L-Dopa Therapy in Parkinson’s Disease A Critical Review of Nine Years’ Experience André Barbeau Canad. Med. Ass. J., Dec. 27, 1969, vol. 101.791.

TABLE VIII…DOPA-Induced Dyskinesias [include]:
Slow wave-like, anteroposterior rocking or nodding of the head. Much rarer lateral tremor of the head (similar to senile tremor).
Acute akathisia anxiety reactions with inability to stay in one spot.
Internal rotation with extension and retroversion of arm. True ballistic movements (“arm shoots out”)
Slow reptilian motion of arm with extension of hand and fingers alternating with flexion (athetosis).
Tremor modification: increase in amplitude in initial phase of treatment (with diminishing rigidity) followed by decrease in rate and amplitude.

Hedonistic homeostatic dysregulation in patients with Parkinson’s disease on dopamine replacement therapies G Giovannoni, J O’Sullivan, K Turner, A Manson, and A Lees J Neurol Neurosurg Psychiatry. 2000 Apr; 68(4): 423–428.

… They tend to disregard dosing schedules and start to self medicate using somatic cues, often unrelated to Parkinsonian symptoms, to take their next dose of medication. …Their perception of the on state is altered and they only feel on when markedly dyskinetic. …With a progressive increase in the level of the DRT a hypomanic behavioural disorder may develop with the potential to progress into a manic psychosis. The mania is non-specific with typical psychomotor agitation, increased excitability, and elevated mood or euphoria

Tardive Dystonia due to D2 Antagonists and Other Agents M.Skokou, Evangelia-Eirini Tsermpini, A. Giamarelou, A Gogos and P.Gourzis (FROM Dystonia - Different Prospects Ed.Tamer Mohamed Gaber Rizk Pub.: Nov. 5th 2018

The issue with his arm and the way he’s holding it could be related to dystonia, which is a kind of muscle problem that can happen with Parkinson’s meds like carbidopa-levodopa. It’s pretty common when adjusting to new medication.

Since his doctor mentioned he can’t mix other meds because of his asthma, it might be good to talk about other ways to manage symptoms, like physical therapy. Also, keeping track of when and how his symptoms change could help his doctor adjust the medication timing or dosage more effectively.

In my quest for additional support, I came across gcmaf capsules, which are an alternative to the traditional GcMAF injection. These capsules have been helpful in maintaining overall health due to their specific properties; each capsule contains 300ng of MAF and requires refrigeration to stay effective.