It's been a long wait since the neurologist told my husband that he was 80% sure he had PD and to go away and come back in six months - when I first joined and posted on this forum. That appointment was earlier this week and the neurologist is now 100% certain of his diagnosis. However, he did not put my husband on any meds as he said that he is in the early stages, the drugs cannot alter the progression of the disease, only the symptoms, and there is nothing to treat tremor, which is probably his most significant symptom to date. So we have another six month wait. Apart from the tremor (in his right hand in particular), my husband has some rigidity in his face, a slight stoop, does not swing his arms, and is generally slower in mind and movement. Does anyone have any suggestions as to what he can do going forward, apart from exercise? Thank you in advance.
My answer
Where are you from I can not believe what you posted.
Go back and get some meds and Jump on your DR. he is a asshole.. Would he send home a person with a broken arm and tell them it is a little broken and come back when you are worst. I am mad as hell right now. Tremor is treatable with carbidopa levodopa. Why must he suffer with his symptoms. They all can be helped if not completly controlled with meds.
WTF I am shaking and i have not been this mad in a long time.
Call or contact that sob and demand to see it again and don't leave with out some meds.
I am 62 and i am crying now. I am so upset.
Please answer back
my email is
Written by
Bailey_Texas
To view profiles and participate in discussions please or .
Yea when I read the post I thought the doctor was pretty stupid. He could have easily placed this man on low dose levodopa and a low dose MAO-b inhibitor like selegiline/deprenyl. Not fond of azilect because it is irreversible.
DO NOTHING! Great, I too could be a doctor and so could everybody on this website.
Really, PWP and doctors have a tenuous relationship. PWP can be difficult and often have a 'pre-morbid' personality. And doctors can be cool, don't listen to your complaints - been there done that, and give you your 15 minutes then you are out the door. If something does not comply with their framed medical world view, it does not exist. Even it this man tries something, say NADH, and it did not help him physically, he still could possibly feel benefit from it because of the placebo effect (and the same goes for C/L, deprenyl, etc). Given NADH has helped 78% of PWP with best benefit to those earliest in the diagnosis, I think the placebo effect would not be the mode of improvement.
The power of the mind can be a great thing and placebo effects can last up to 2 years.
The bottom line is doctors are not gods, believe me I know, and there are good ones and bad ones. I think it is time for a second opinion.
What it means for Azilect to be "irrreversible" is that the Azilect that is present binds irreversibly to the MAO-B that is present at the time. The body is constantly producing more MAO-B enzyme, so if one stops taking Azilect, it depletes soon enough and new MAO-B that is subsequently produced is then no longer bound and inhibited. So as a practical matter that "irreversibility" is short-lived.
WOW!! Get another doctor. Like your husband, I had a lot of the same problems. I was put on meds right away and what a difference it made for me.
Get Another doctor that cares and give you the meds you need. The meds change as time goes on. I see my doctor every 3 months and change meds as needed.
I hope you get the meds that help for a better life for you both.
It's me again. I am possibly sometimes not able to see replies to my posts that are actually here. I need to check navigation of the site more closely.
In regard to the person with possible early PD who was told by neuro to leave until next appt in 6 months....the words of my husband's neuro at the initial visit were "I don't think you have anything bad....its manageable; if anything, less than Stage 1." He gave 3 month trial prescription for C/L 25/100 and instructed to go up easily- no rush- from 1 to 3 tablets a day. In these last 7 weeks my husband has changed, but mostly not for the better. He is experiencing memory issues, extreme confusion and disorientation, to point of even asking me my name at one point. He goes in and out and usually a few seconds or minutes after such an "episode", with us talking through what just took place, he realizes he was mistaken. He is extremely heat intolerant and it seems to enhance the confusion. He gets down about it. He is taking no initiative to do anything on a consistent basis. He used to love exercise and I think still does, but if I don't push him to do his posture exercises or go to the gym, or swim or walk, he does not do it. He seems to have no focus or attention span or something. I read about how this C/L is the go- to and also how everyone is different. I understand that, but I don't believe I have read any posts here with a reaction to C/L such as this, especially in an early diagnosed person. Any comments or suggestions? Next refill on meds has to be tomorrow. Does he continue this or look to something else? Really need help. Thank you.
I would call his doctor it does not sounds like the meds but might be. I would ask the Doctor how to reduce the meds safely and get him off of them to see if the promblems go away
They have replicated plaques and tangles in the lab and have a direct link between toxic algae (BMAA) and parkinsons, Alzheimers, ALS, through brain samples. And a non direct link with Psp through hair samples.
They think nearly all kinds of algae produce BMAA.
Algae is found in every Eco system on the planet.
12/12 lochs, lakes and reservoirs in the UK have tested positive for BMAA.
The BMAA replaces serine in the amino acid chain affecting the membranes of cells.
The theory is flooding the body with serine can stop this process.
They have reduced tangles in the lab using l-serine.
You can buy a kilo of l-serine online for about £63.
Good luck.
Also, if you are in the states, look into cannabis. New research has concluded cannabis removes plaques from the brain.
I have looked into the possible etiology of Parkinson's, ALS....and have noted that whomever is doing the research puts forth their idea as the cause. From studying other possible 'causes' of PD, BMAA may, to use cautious scientific terms, be a contributory factor for the development of neurological conditions such as Parkinson's and ALS.
Cyanobacteria have prospered because of agricultural run off containing nitrogen-rich fertilizers thus spurring cyanobacteria growth. Additionally, another component of agricultural run off is pesticides and they are a risk factor to the tune of 80% for Parkinson's disease. Other causes have been put forth for PD, including: bacteria, viruses, blunt head trauma and all are valid with scientific justification.
As for serine and ALS, it is already in a clinical trial:
And the (video) doctor mentioned that dietary supplements may be used in treating ALS. This is true and the Deanna Protocol was developed by a doctor whose daughter developed ALS. I looked at their supplements and do not think serine is an ingredient.
The most interesting bit of learning I gleamed from the video is if you respond (by becoming more calm/restful from taking GABA as a supplement) you have a defective blood brain barrier. GABA does not cross the BBB and if you feel relief/become calmer from this supplement, your BBB is porous. It is known that people with neurodegenerative diseases have dysfunctional BBB and by taking a simple supplement (as monotherapy) like GABA, it would confirm it.
Metabolic Therapy with Deanna Protocol Supplementation Delays Disease Progression and Extends Survival in Amyotrophic Lateral Sclerosis (ALS) Mouse Model
I discovered this protocol because I am looking for supplements which actually combine different nutrients for PD rather than taking a multitude of pills. Interestingly, I also found a good eye vitamin for PD and a hangover remedy. The Deanna Protocol also been put forth as Parkinson's disease therapy because of the nutrients the therapy contains: ubiquinol, niacin, 5-HTP, caprylic acid (from coconut oil), AKG....:
PS (edited). The method used to treat ALS by Dr. Tedone attacks glutamate toxicity and D-cycloserine, brand name Seromycin, has been tested in PD models:
I am so sorry you have been badly affected by this post - I think most of us will be gobsmacked (UK) at the incompetence of the doctor. I have had such excellent treatment since my dx 12 years ago that I almost feel guilty when I come across a case like this.
I was dxd via a nerve trial after wearing down my GP's resistance to my 2 or 3 year plea to get my left side tested as I was gradually losing the use of my hand & foot. I no tremor but poor arm swing & draggy left foot. The consultant who came to give me the results of the nerve test asked me to do a few more tests after which he said he was fairly certain I had PD & asked me to see him in a fortnight with my husband. When we made the visit he told us a lot of general PD background & invited us to ask any questions. He then asked if we would be prepared to take part in a trial which involved taking 1 of the 4 most popularly prescribed drugs on dx. We agreed & I was put on Sinemet (Carbidopa/Levidopa) for an agreed minium time. I thought I was dying: I fell, fainted, couldn't stay awake etc. After that time we saw him again & took me off the Sinemet, which would not have been his choice, & started me on Ropinirole (Requip) a dopamine agonist. This suited me much better & I still take it today. I also now take Sinemet as the time is right.
The Requip helped with my symptoms which did a nosedive not long after dx. My left side was seizing up & turning in to my body, my hands & feet were like claws left side rigidity. The Requip sorted out those symptoms & also my emerging tremor. There are a number of meds which will combat tremor & all the other symptoms & the idea of leaving PwP to use up more of their own Levodopa without treatment is incredibly old hat, having been discredited in a number of trials.
My first visit to the Dr for my symptoms was much worst than his. It was a Friday after noon . The doctor told me i most likely had ALS that's all he said and sent me home. You can imagine what my weekend was like. New Dr. on Monday morning and got true DX. This is why i felt this so deeply.
It me that that posted the post that so upset Bailey. The response was amazing and I would like to thank everybody again who wrote a post. They were all very helpful. This is to update you all. My husband wrote an email to the neurologist in question (well I typed it as his tremor affects his typing) saying that we would like to have the reasons behind him not prescribing him any medication. To our amazement, he did not answer that but just said in a one sentence reply that he had no objection to giving him medication! We wrote back again asking for the reasons he had not recommended this before, so that we were able to make an informed decision. He replied saying that he had not thought that my husband's symptoms would respond to treatment. He then said that he would write to our doctor with a prescription (no information about what drug or how much the dose would be). We saw this guy privately as we have medical insurance (although now that we have a diagnosis we will have to go on the NHS as the insurance does not cover chronic conditions). It is typical of the NHS that the patient is treated as an idiot and kept in the dark: take this and go away. We went privately, goodness knows how he treats his NHS patients. We have been trying to find another neurologist who specialises in PD. It looks as if Newcastle is our best bet - or Queens Square in London. However we are not sure if there is cross referral between the Scottish and English NHS (they are run separately). If anyone can help on this, we'd be most grateful.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Did your external tremors 'start' as internal tremors?
New here just joined in
Question for all that have been here for Awhile
Mucuna and When to Eat
