Young onset Parkinson’s patient - Cure Parkinson's

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Young onset Parkinson’s patient

Schofield81 profile image

Hi

I’m David aged 41 just diagnosed with Parkinson’s and really really struggling to cope with the news at such a young age.

My motor problems are minimal at present, just slowness, stiff left shoulder and occasional tremor in my left thumb.

However my non motor symptoms are debilitating. Been in major depression anxiety and anhedonia for 3 years and now totally apathetic, constantly in a state of brain fog and fatigue ridden. Smell is foul and my thoughts are very dark. Lost my job and my world is very small now.

Been through lots of antidepressants but currently not on anything. Neurologist wants me to start low dose sinemet but I’m very anxious about side effects and doubt it will help with non-motor symptoms.

Can anyone offer me hope?

Might sinimet positively effect non-motor symptoms?

I’ve started HDT B1

Anyone had any success with the coronet red light therapy?

Feeling desperately devoid of hope

83 Replies

I was diagnosed 3 years ago but not confirmed til I had the DAT test last year. I fought the diagnosis because I don't have stiffness. I have tremor and lousy handwriting. The docs want to take my license but I refused to give it up. I think I failed the driving tests because of depression. I don't use my car but I have a motorcycle. I have no problems working the pedals on the bike: I don't mistake the brake for the accelerator.

I take Rytary, a long-acting form of sinemet. I take Duloxetine, an antidepressant. I think it keeps me from having suicidal ideation. I lost my job and home and had to move across the country. I'm 65. I wish things were different but don't know what to do about it. I tried B1 but didn't see any change. I looked into red light therapy but since I don't have stiffness or slowness I don't think it would do much. Good luck.

Wow, I did not realize you lost your job and home Kaypeeoh. That is tough.

Years before the diagnosis I sensed there was a problem: I was making dosage errors and having problems doing surgery. I found a Veterinarian willing to buy my practice. Then I sold our house in Wyoming and my wife found a new house in Connecticut. In Wyoming it was a three-hour drive to see a neurologist. In Connecticut it's basically walking distance to the new doctors.

mhberman profile image
mhberman in reply to kaypeeoh

Have you investigated Photobiomodulation?I’ve had good luck with it for some patients and our dementia clinical trial in which several subjects had PD as well as dementia, showed improved motor, mood and cognitive functioning.

Marvin Berman PhD

kaypeeoh profile image
kaypeeoh in reply to mhberman

I looked into Vielight but decided I'm doing well enough that I don't need to spend 2k for a head bucket or nose clips. But I could change my mind anytime.

mhberman profile image
mhberman in reply to kaypeeoh

When you decide you’re not doing ‘well enough’, you won’t be able to recover as much as you can now.

The mindset of waiting until you are incapacitated to invest in your brain health is a part of the problem. Good luck.

NRyan profile image
NRyan in reply to mhberman

which photobiomodulation are you using in the trial?

mhberman profile image
mhberman in reply to NRyan

Neuronic.online

Despe profile image
Despe in reply to mhberman

WOW! Not cheap.

mhberman profile image
mhberman in reply to Despe

if it helps you then divide it into the rest of your life.

kevowpd profile image
kevowpd in reply to mhberman

Transcranial Near Infrared Light Stimulations Improve Cognition in Patients with Dementia

Is this the correct PDF?^

If so, havent read the full doc yet but pleased to see that the effort was made to include a placebo arm. Sick of PD trials with no placebo.

Despe profile image
Despe in reply to mhberman

I will pass, thanks. :) This is what we use with excellent results. wellred.com.au/

mhberman profile image
mhberman in reply to Despe

Oh I didn’t know you had something that was helping. Great for you.

Despe profile image
Despe in reply to mhberman

Actually, it helps my PD husband, not me.

Hi Schofield. Welcome to Healthunlocked. Sorry you are feeling so down. Sinemet or Madopar (C/L)is the standard treatment for Pd. Even though is meant to work only on motor symptoms i read that that in many cases it also relieves some non motor ones. Everyone of us responds different to medication so is difficult to predict. One thing that i find is that my walking and exercice under C/L are more fluid and intense and thus the depression and fatigue lift. Fortunately you have started also the HD b1 and you are here. Keep reading and sharing and day by day your circle will expand a little bit more.

Hi David Please see below my post of 3 months ago that you might find useful. Be strong. PD is not the end of the world. For me it meant a new life.

healthunlocked.com/cure-par....

Do you have a link to purchase the ps128 probiotic supplements? Thank you for your reply

I have been using this one for a while but it is out of stock. SYNERGIA PS128 30 Sticks | Neurobiotic Lactobacillus plantarum | 30 Billion CFU Production amzn.eu/d/gO9wbbh

I have therefore reverted to taking Symprove which has had no negative impact. Helps me with digestion. Not so sure about psychobiotic benefits.

Welcome. Keep reading.

When most of us are newly diagnosed, we go through a process of denial, anger, often depression, grief, eventually growth, and finally acceptance. When we reach an emotional acceptance, we find that Parkinson’s is not as bad as we imagined. It’s not a death sentence, it’s a wakeup call.

We don’t get to choose the hand we’re dealt, but we can choose how to play it.

There is one advantage to getting a diagnosis at your age and that is you are better able to adopt a robust exercise regimen. Try becoming a runner (or cyclist or swimmer.) I believe it would also help with depression and apathy. That's what I would do were I in your situation.

Very well said MB: “It’s not a death sentence, it’s a wakeup call”. I will remember that sentence and (with your permission) re-use it.

Be my guest. I'm sure I got it from someone else, anyway.

kaypeeoh profile image
kaypeeoh in reply to MBAnderson

Every appointment starts with me reciting all the meds I take. When I say, cinnamon from Ceylon, nicotinamide, DIM and melatonin they chuckle and there's eye-rolling. But they don't say anything negative about them.

David,

I suggest that you read about melatonin as it relates to PD. Melatonin production declines in humans with age, and age related diseases inversely rise with this decline of melatonin. PD is an age related disease as the main risk factor for PD is age. Melatonin has already shown benefit for people with PD in three studies. Melatonin has an excellent safety profile and helps prevent the other diseases that PwP are at increased risk for such as stroke, leukemia, osteoporosis, colon cancer and Cardiovascular disease. Aside from the age related decline of melatonin, PwP have even lower levels of melatonin. Here are a few things I have written about melatonin as it relates to PwP :

healthunlocked.com/cure-par...

Art

Hi David,I was diagnosed at 45, 2 years ago. I take C/L (levodopa) and really helped with my movement symptoms. This allows me to exercise which helps my movement and my mental wellbeing . I also joined the PD warrior programme soon after diagnosis and it helped me feel back in control of things.

I have the red light coronet and symbyx laser and believe they help give me more energy and feel perkier!

I think it’s a combination of things that helps and finding the right combination for you.

I think there is hope and you can still have a good life with PD. I’m still running, cycling, dancing and paddle boarding and I believe all of this helps keep me feeling good!

Rupa88 profile image
Rupa88 in reply to CiciDuBois

HiCan you please tell be about your red light helmet

What brand is it and where fid you get it from?

CiciDuBois profile image
CiciDuBois in reply to Rupa88

HiMine is from Symbyx biome where I bought my laser from though they don’t seem to advertise them. symbyxbiome.com/products/sy...

gwendolinej profile image
gwendolinej in reply to Rupa88

The Wellred coronet is the one we have. We also bought their Therapad, which we use on the gut. ( It’s also great for injuries.) My husband was starting to jerk around with his legs in bed, which wasn’t doing much for his or my sleep. He uses the coronet and Therapad twice each daily. It’s early days, but it seems to be working.

My husband’s neurologist says a number of his patients have told him they are using it with success.

Hi David, one thing that will help your mood at least is to join the Zoom calls Marc is kind enough to host on Saturdays and Sundays:

us02web.zoom.us/j/833522248...

Saturdays, 7 PM – 8 PM-ish, US Central Daylight Time (GMT–6.)

Sundays, 11 am – 12 PM-ish, US CDT.

Whilst everyone is well intentioned, i get the feeling some people simply dont understand how bad these problems can be. PD doesnt represent a "new life" if you have crippling non motor symptoms that prevent you from experiencing any joy. That may be an existence, but its not a life. When that is a neurobiological result of the disease, and not a reaction to the diagnosis (or the other parts of the disease), its not quite so simple to just shake it off by exercising or socialising (not that these are not critical, but you need the mental energy to get to there), or adjusting your attitude.

So: you need to ask your neuro about dopamine agonists. Theres unimpeachable evidence, and no shortage of it, that they can directly treat the symptoms you describe. Ill leave you with one link here but there are plenty out there.

thelancet.com/journals/lane....

Acquaint yourself with the side effect risks. Impulse Control Disorders mostly. Potentially serious but not so bad that you should go on living this way without possubly trying them. Can be monitored.

Gymsack profile image
Gymsack in reply to kevowpd

I believe that there is very little reason to take dopamine agonists if he is not taking Dopamine

You should maybe look at B3: healthunlocked.com/cure-par...

Bydureon (a.k.a., Exenatide), a repurposed Type 2 Diabetes drug is now in third-stage trials in UK for stopping Parkinson’s in its tracks — results expected 2024. Testing — mice, open label, double blind — has been going on since 2010 and it has been positive every time.

scienceofparkinsons.com/201...

According to a very sensitive test, Homeostasis Model Assessment for Insulin Resistance (HOMA-IR), 2/3 of Parkinson’s patients are supposed to be insulin resistant. IR may be treated with Bydureon (Exanatide). Just an angle that might get us one step closer to getting Bydureon.

cureparkinsons.org.uk/news/...

South Korean researchers have learned how to dial our cells back to stem cell stage -- and are now administering monkey stem cells to parts of their brains that are short on dopamine producing cells -- with the hope they will fill in and take over the job.

Started this before with stem cells from other monkeys and had some success I think until local immune systems attacked foreign cells.

So there is even realistic hope for a cure.

Patrickk profile image
Patrickk in reply to Patrickk

Parkinson's Disease:- Prof Tom Foltynie "Does the repurposing of diabetes drugs offer hope for PD"

Haven't watched it yet myself (1:20:00 long)

youtube.com/watch?v=36Fe1bv...

Hi David,

I find it strange that your neurologist has made a certain diagnosis of PD without testing the reaction to levodopa, (if I understand correctly), but I am not a neurologist. Do you have a datScan? What does it say?

Hi GiocAs a general rule, they don't use levodopa to diagnose PD in the UK. Datscans aren't always routinely used either.

Thanks, And what do they rely in UK on not confusing PD with other diseases?

Patient history eg poor sense of smell, two of the cardinal signs, physical tests and consultant judgement. They will rule out Wilson's disease with urine tests and brain abnormalities on MRI. Using levadopar to diagnose was considered bad practice a few years back I seem to remember. It doesn't seem a lot to base a diagnosis on I'll admit. I was a bit baffled that my consultant wanted to see my handwriting when my non dominant side was the affected one! There might be some different practice in other areas of the UK but those are the published guidelines here (called NICE guidelines.) We really need better ways to diagnose it.

My neurologist. He spent about 10 mins listening to my history then had me do the hand gestures and walk up and down a corridor. Said he’s 90% sure it Parkinson’s but I need to take L/C for a month then review. DAT scan was brushed aside as not reliable and no mention of mri urine blood or any other test. I’m not passing judgment on him though he described my idea of high dose B1 as whacky but said I could try it but it’s poorly researched. No connection to Parkinson’s nurses or any other support. Told me not to go on the internet researching. Feel like they have same crappy pills that are making pharma a fortune and won’t be really bringing anything new on the NHS anytime in the future

Considering our growing numbers, I think pharmacy does have an interest in some better management. It's hard not to be cynical though.

Gioc profile image
Gioc in reply to Schofield81

I understand you David, maybe he has his reasons (See below my reply to stillstand)

Trailing profile image
Trailing in reply to Schofield81

David if you are concerned about taking the drugs because of their side effects, you might consider a more natural solution. My husband is taking Organic Mucuna Pruriens Seed Powder instead of the usual drug treatments for his Parkinson's. It contains 5% L Dopa and works for him similar to the medications (which contain synthetic L-dopa). This is not an extract but the whole seed ground up into a powder.

We've been getting it from Z Natural Foods. As a whole food it contains other beneficial ingredients. He mixes it with water and takes it three times throughout the day.

But the most you can do for fighting your Parkinson's and mental outlook is exercise and your age should give you and advantage there. John Pepper on this blog has practically eliminated his Parkinson's symptoms with fast running.

But we are all different. What works for some doesn't for others. Also, for me personally, it is my faith in Christ that gives me hope for each day.

Trailing profile image
Trailing in reply to Trailing

Opps! I should have said that John Pepper does fast "walking" and not fast "running".

Gymsack profile image
Gymsack in reply to Schofield81

I have had PD now about 20 years. gone through 4 neurologists (one died, and I fired one and the guy I have now is great ) 2 appointments per year = approx 40 appts ,

In each and every appointment the neuro had me do the hand gestures and look up and look down. Every time they said " I think its just Parkinsons"

If the Levodopa works then you have Parkinsons or Parkinsons plus.

Datascans are seldom used in Canada. There is no such thing as a PD nurse in Canada and the only other support is a local discussion group

I know that you are angry but to be honest you are just not that special. There are many like you and the world has no time to play games.

Thanks for the correct tip. I found the most recent NICE guidelines in this article in Italian entitled "Guidelines for the diagnosis and treatment of Parkinson's disease" where it deals with the NICE guidelines in the UK of which a quote: "Phase 3. Supporting criteria of a diagnosis of Parkinson's disease Make a definitive diagnosis of Parkinson's disease in the presence of at least three of the following:

Unilateral onset of symptoms

Excellent response to levodopa

Presence of tremor at rest

Severe chorea induced by levodopa

Progressive symptoms

Response to levodopa for over 5 years

Persistent symptom asymmetry, with greater involvement of the onset side

Clinical course of over 10 years "

You will notice that 3 out of eight points are based on levodopa and there are other criteria that exclude PD.

evidence.it/articolodettagl...

Thanks Gioc. Just to add this, copied from the NICE guidelines.

"Acute levodopa and apomorphine challenge tests

1.2.13 Do not use acute levodopa and apomorphine challenge tests in the differential diagnosis of parkinsonian syndromes. [2006, amended 2017]"

Thank you Stillstandingstill very interesting and enlightening.

You are well understood here David. MBAnderson said it best. Time will help you overcome the dread you are feeling. For me the anxiety was the worst non motor symptom I had. I didn’t want to start meds for the slight tremor I had but my neurologist convinced me that sinemet would help the anxiety and it definitely helped me. I use the red coronet and intranasal unit from Vielight The best medicine for me is taking me walks in nature and continuing my passion for wildlife photography. It’s definitely a struggle to get the “what ifs” out of my thoughts sometimes. doing the things you love or taking up a new hobby can help distract and make you feel more grounded. There are great resources and YOPD support groups. I can point you in the right direction if you want. I have learned so much about supplements , nutrition and living well with pd from all the warriors on this site. Take things one day at a time

Hi David

We can offer you hope and we understand how bad these problems can be.

Reading your story, I could have been the author regarding my husband. The only differences are that he was diagnosed at age 57, doesn’t have any tremor, or foul smell. Otherwise everything else is exactly what we went through!

My husband was having treatment on his left shoulder for over 10 years before diagnosis (left side dominant).

The depression and anxiety started 2015. Tried first lot of antidepressants January 2016, things got worse. We were walking the streets at 1 and 2 am and maybe having total of 2-3 hours sleep at night. Things were spiraling downhill fast. Tried second lot of antidepressants, no improvement.

Went to a naturopath who gave him melatonin for sleeping because without sleep, nothing works! That very first night, he slept 6 hours straight. It was a miracle! But he still had depression and anxiety so bad that he had said to me that he can’t keep living like this. We changed doctors and were prescribed the antidepressant Lexapro and this doctor weaned him onto it, not like the previous doctor who put him on maximum dosage straight off.

He started the antidepressant the same day that he started taking Madopar (similar to Sinemet). The reason being we were desperate at this stage because the depression exacerbated his Parkinson’s symptoms which in turn exacerbated his depression. He could no longer do buttons up, dress, clean teeth etc and like you, had no interest in anything or anyone. He just sat there looking blank. I’d take him in the car with me when I did the shopping as I was afraid to leave him home by himself. But he would just sit there looking straight ahead, no interest in anything.

Our Parkinson’s Specialist Nurse was instrumental in my husband starting Madopar as he was getting worse, not better. He got him into PD Warrior and PD boxing and we joined a support group. Exercise is so important and has shown to slow down progression. See if you can join a Young Onset PD support group in your area. It would help immensely. So important to connect with others in the same situation. My husband didn’t want to go in the beginning but he looks forward to it now.

My husband also takes B1 and he is a responder. After 3 days on HDT his constipation went. He’s been taking it for 3 1/2 years now but we still have to keep adjusting the dose as we go along.

As for the coronet, it’s definitely not doing any harm. He also uses the Vielight intranasal device every evening to aid sleep. Research, and do whatever you can. When we look back to a year ago he’s not feeling any worse and the ‘honeymoon’ period would be just about over 🤞He no longer has the daily anxiety.

Sorry this is so long but I hope I’ve addressed any concerns you may have.

Try not to read negative answers in the replies, it will not help one iota.

You are young, and you can do this!

Jenny

Pinca6 profile image
Pinca6 in reply to Jennyjenny2

Jennyvjenny2, grazie per aver pubblicato questa testimonianza, che dá speranza. Mio marito ha avuto la diagnosi a 56 anni, 5 anni fa, e si trova in un momento difficile, ma continuiamo a cercare e provare.

Jennyjenny2 profile image
Jennyjenny2 in reply to Pinca6

Pinca6, hope is what keeps us all going. 🌸

Can someone please help me out with the translation? 🙏

Gioc profile image
Gioc in reply to Jennyjenny2

Traslation:

Jennyvjenny2, thank you for publishing this testimony, which gives hope. My husband was diagnosed at 56, 5 years ago, and he is in a difficult time, but we keep searching and trying.

Jennyjenny2 profile image
Jennyjenny2 in reply to Gioc

Thank you, Gio. 🌸

You're a rock. Tony is lucky to have you.

And we are all lucky to have you, Marc. 🌸

David, I’m so sorry to hear that you feel so apathetic, and depressed, and anxious! It’s extremely important that you have support around you, at this stage of your PD ailment! Losing your job, just makes those bad feelings worse. So, when I was diagnosed, like you, initially my motor symptoms were there, but not debilitating. Apathy, frustration, depression and anxiety were difficult problems, for me. I was lucky, to have found HealthUnlocked.com. I have received wonderful advice, understanding, and support, from many fellow PD suffers, who participate in this forum. The people here, supported me, and helped me get through those first several years, and I have learned to deal with Apathy, Anxiety, and Depression. People on this blog, have always been here, for me, when I’ve needed support! So, welcome, and thanks for being so forthright in how you feel! Early onset PD is, indeed, tough to deal with! I have some support from my family, not much support from the Medical Community, as far as understanding the depth of how Parkinson’s affects a person. Seeing my neurologist, 15 minutes, once or twice a year, is not enough time, to feel like I am supported, well, because my Doctor has told me very little about the disease, how to cope living with it, and how to seek help, when I need some help dealing with progressing problems. People that have the disease, are the best source, in my opinion, for coping and adjusting, to all the ramifications, of dealing with PD. The good news, is that I adjusted, and got through the stage you are in, by teaching myself to adjust to exercising with stiff muscles, achy shoulders, and cogwheel rigidity, along with resting tremors. Sinemet has helped me a lot. A Doctor may suggest an anti-depressant, for you. Propanolol is helpful to me, for blood pressure and heart beat problems, that may have resulted in my case, of progression of PD. It’s now been a number of years since I’ve been at your point, David. I have progressed, but have learned to adjust. Another important help for me, is that I keep moving, and I don’t give in to the stiffness and other symptoms, easily! I have developed the attitude that I am going to fight every day, to live with PD, and know that even though I have PD, it does not have me! Also, in spite of my slow progression, I have found that having PD is not as bad to have, as I first feared, and that I still have control, on how to deal with any symptom, that comes up. Wishing you the best, in your journey having something, that you didn’t want, and, please know, that we are here for you, with this forum, HealthUnlocked.com!

Hi David,

I felt the same as you.

but I found therapies that helped me to stop the disease (diagnosis December 2020) almost completely.

I have described this on my homepage parkinsonclub.de.

I am in contact with doctors who use TPS (Neurolith from Switzerland) and the PDCare from Australia.

I still don't take any medication...

Greetings from Germany

www.parkinsonclub.de

Antidepressants sertraline and fluoxetine caused all kinds of issues and suicidal thoughts with my husband so they don’t suit everyone. Mirtazapine caused apathy and made him sleep all day so he is off them all now. They also are very hard to get off again so if you stop them you need to reduce them extremely slowly over many months. Even the last 10% can cause issues if you just stop it. I bought a jewellers scale and gel caps and crushed the tablets and weighed it into the capsules reducing the amount by a small amount every couple of weeks.

To give your body the best chance clean up your diet of any additives, try gluten and sugar free, eat plenty of vegetables and some fruit. Not too much dairy or meat. Exercise every day. Get a good nights sleep every night with regular bedtime, not too much screen time.

These things can help mood.

My husband has found Hardys daily essential nutrients with added vitamers (clinical dose is 12) and restore gold ( 4x 4 per day) helpful. He reduced these late last year and deteriorated but has improved again after going back to the full dose. He takes a tiny dose of clonazapam (0.5mg ) split 1/4, 1/4, 1/2 over the day and that has helped with anxiety and the depression and suicidal thoughts have gone again.

His PD nurse always wants him to increase his dose of levodopa but it made him worse so he is back on 62.5 x 3 1/2 per day and is doing well again.

His symptoms are exactly the same as yours. He has found levodopa has not helped the stiffness and higher doses make him stiffer. If I was you I would try diet and exercise first, and the above supplements if you can afford them.

As well as aerobic exercises include strength and stretching exercise. And try and push yourself to do things even if you don’t feel like it as the worse thing to do is to start avoiding things that are hard as you may lose that functionality if you don’t use it.

What do you mean smell is foul? Do you mean you smell bad? Even after showering and clean clothes? Do you smell bad to yourself or other people?

You may need to check that you don’t have any infections. Have you had a full set of blood tests for deficiencies and infections? Have you had tests for diabetes as that can cause an odour. Or sometimes medications can cause a bad smell in your own nose but other people can’t smell it.

The Parkinson’s smell I believe is a problem with the breakdown of fatty acids so a digestive enzyme might help and I think pantethine also helps my husband.

Or do you mean you can’t smell anything?

I’m 52 and diagnosed at the beginning of the year, which feels very young to me! I’m going a bit left field here to recommend learning transcendental meditation. Sounds like you need it! If you’re not that way inclined I’d advise try it anyway as it’s not that weird and for me it’s made a huge difference, particularly for my sleeping but also in general! Go to a genuine tm teacher and learn properly though!

Best antidepressant medication (most effective, best safety profile, fewest side effects (virtually none), least likely to lose effectiveness over time, fewest if any interactions, best tolerated) that I've seen over decades: duloxetine.

Despe profile image
Despe in reply to MarionP

Best tolerated?

mayoclinic.org/drugs-supple...

MarionP profile image
MarionP in reply to Despe

In MY actual clinical experience of 20 years using this medication with MY patients, yes, doctor. And you?

Despe profile image
Despe in reply to MarionP

I will take your word for it. I just checked side effects.

David. I've written and deleted quite a few replies so far. If it helps, many of us can empathise, having been confronted by that life changing diagnosis. For me, two years after my news, I can say that beyond those early days, there is still hope, and even joy. There are things you can do for yourself, and there are potential medical breakthroughs on the horizon albeit never fast enough for those of us waiting. This site and the Science of Parkinson's are great resources. I wish you all the best.

I was diagnosed 6 years ago when I was also 41. Did Ayurveda treatment for 3 years before starting the first dose of Selegeline and continued Ayurveda. I started with Sinimet last September and use the coronet as well. My advise is to excersise and do the Lgvt physical therapy as they recalibrate the brain and keep a positive attitude. It’s been manageable so far.

Parkinson's Disease:- Prof Tom Foltynie "Does the repurposing of diabetes drugs offer hope for PD"

Haven't watched it yet myself (1:20:00 long)

youtube.com/watch?v=36Fe1bv...

David I’m sorry to hear you are dealing with this problem at your or any age. I’ve been working in the area of light therapy for a while and am happy discuss my experience back channel. I do believe that infrared light therapy can help reduce PD symptoms, especially 1070nm LED stimulation. Marvin Berman PhD

Quietmindfdn.Org

David if you are concerned about taking the drugs because of their side effects, you might consider a more natural solution. My husband is taking Organic Mucuna Pruriens Seed Powder instead of the usual drug treatments for his Parkinson's. It contains 5% L Dopa and works for him similar to the medications (which contain synthetic L-dopa). This is not an extract but the whole seed ground up into a powder.

We've been getting it from Z Natural Foods. As a whole food it contains other beneficial ingredients. He mixes it with water and takes it three times throughout the day.

But the most you can do for fighting your Parkinson's and mental outlook is exercise and your age should give you and advantage there. John Pepper on this blog has practically eliminated his Parkinson's symptoms with fast walking.

But we are all different. What works for some doesn't for others. Also, for me personally, it is my faith in Christ that gives me hope for each day.

Hi DavidPlease look at the work of dr Janice hadlock. Her site is pdrecovery.org. There is a lot of hope especially as you are not on medication yet. I am 3 nearly 4 yrs into diagnosis and the anxiety and panic attacks were horrendous. I am so much better following dr had locks methods. Her books are free to download. When I read them it was like reading about my life . It’s worth a read and a try. There is always hope. Good luck and I hope you find the right way forward for you .

During our recent visit at Vanderbilt, I asked my husband's MDS if she had a disease-modifying medication or if there would be one in the near future. She replied negatively, but she told my husband that at the present time the best "disease-modifying med" is EXERCISE!

I also asked her to prescribe the brand name of Sinemet, and she did. I went to the pharmacy to pick up the prescription. The pharmacist quoted $3,000!!! Of course, no one would have paid this ridiculous amount of money for medication unless one doesn't know what to do with his/her money. :)

Hi, my names Dave, I am 46 and was diagnosed 18months ago literally on the verge of the whole lockdown situation. The diagnosis was a complete shock to me, I had medical anomalies 5 years previous which made sense once I was diagnosed, the diagnosis put me in a very dark place and was totally overwhelmed as well as heartbroken, the country going into lockdown made the whole situation worse!What I did was to reach out for help, I got in contact immediately with my local Young onset Parkinson’s group, they are nation wide and also got in contact with Parkinson’s Uk, these when I now look back were a massive step to coming to terms with and getting support of people who have/are going through what you are, I can’t encourage you enough to at least give them a try. The support group were fantastic and helped me greatly, I had a 4 month wait before I got to see a specialist and knew I couldn’t wait that long, I have had massive support from my family but there is a world of a difference in talking with people who actually know how you feel as they have experienced it themselves, and from what you have mentioned I know most people I have talked with have felt much of what you are feeling, your genuinely not on your own although it feels that way. Parkinson’s Uk also have a tonne of information and people who can help you and if they can’t they’ll put you intouch with people who can, they also run a “ first steps” program which I actually did, it’s for people newly diagnosed and have afew online session where everyone shares their experiences and explore options, again I found it a very worthwhile and beneficial for me, I was the youngest by a few years but nevertheless I would highly recommend it, I have since met quite afew people in my age bracket with Parkinson’s, so your definitely not on your own, there is a whole process to go though and it is individual specific and that will be what you make it to be, but I know how hard the early stages are. Things that have really helped me have been the support network, exercise!!!! This is massive and one of the only things you have in your power to actually make a difference to your condition, but it really does help and also with the mental side too, Parkinson’s Uk have classes and info of classes near you and another great way to meet people in your situation. Be careful of the b1, I say this because I am on my own journey with the B1 but it can be easy to overdose which will make your symptoms worse, the B1 is very much trail and error but at the very early stages of diagnosis I would advise to leave it till you are in a better place with your diagnosis. One last thing I would say is stay away from looking things up on the net, for me I never looked at anything….. at all, there is sooo much information out there but you will not know what is relevant to you, im glad I didn’t and waited to speak with the professionals who actually knew what they were talking about, but that was just my way, I’m not saying it’s your way but just giving you things to think about, things will get better for you but you also have to be proactive in your own journey, but know you are definitely not on your own and a whole Parkinson’s community who are willing to help, you just have to let them in.

If there’s anything I can do to help I’m only too glad to be of assistance, be kind on yourself,

Best regards

Dave

Despe profile image
Despe in reply to dgriff76

Sorry for intervening, but you are not a doctor to pass advice. You may suggest anything based on PERSONAL EXPERIENCE.

If it was not for the net, you wouldn't have found this wonderful forum, people with Parkinson's who share their personal journey and their therapy. You will be surprised with the thesaurus of PD information, trials, homeopathic and conventional therapy that is available here and on other sites. Many distinct professionals/doctors use the net to pass on the latest of PD therapies and trials and then some! Major universities and institutions are on line and within a click to find out the latest on any ailment. Honestly, I have not learned as much from my husband's MDS as I have from this forum.

I know I am glad I joined HU almost 5 years ago.

Hi David, I was going to mention the Wellred coronet, but thought you had enough with what you were trying. Alan has been using the Wellred coronet and their Therapad recently (twice each daily) in the hope that it might help with his legs jerking pretty violently in bed at night. He uses the Therapad on his gut. It’s early days, but it seems to be working. I don’t know at this stage what else it’s doing.

I’m glad you’ve joined us. Between the two sites you’ll get lots of support, as you can see from the replies here.

Gwendoline

Schofield you said

" Been through lots of antidepressants but currently not on anything. Neurologist wants me to start low dose sinemet but I’m very anxious about side effects and doubt it will help with non-motor symptoms."

my experience:

Sinemet helps me very much with non motor symptoms. That is the primary reason I take it.

Your Neurologist probably has a BA in health science , a medical doctor's degree and a degree in Neurology. He went to school a very long time and while not perfect he is probably the closest thing to perfect that you have access to. He prescribed levodopa and you have decided not to follow his advice and not even try it to test it and instead are getting advice from perfect strangers over the internet about light therapy .

There is a reason why they do not call this disease Parkinson's inconvenience

You are walking on the edge of a very long down ward slippery slope that gets steeper and steeper .

kevowpd profile image
kevowpd in reply to Gymsack

Indeed.

The case of salvation1 presents us with a cautionary tale. From this:

I am a big believer that Parkinson’s can be halted, reversed and even cured, but feel that modern medicine is looking at the disease the wrong way and is typically looking to address the symptoms rather than the root cause. I found everyone from the medical side uninterested in an alternative approach and was continually told to ‘take the meds’.

healthunlocked.com/cure-par...

To questions about various alternative therapies:

healthunlocked.com/cure-par...

healthunlocked.com/cure-par...

And of course a long discussion about thiamine, including plenty of advice from self taught thiamine experts with no experience in the management of PD in any capacity whatsoever.

healthunlocked.com/cure-par...

Then, sometime later, this:

Sadly despite my best efforts, my symptoms have worsened, resulting in me spiralling downwards into what can only be described as a ‘very dark place’. It seemed the harder I tried to address the symptoms, the worse I got.

healthunlocked.com/cure-par...

Gioc profile image
Gioc in reply to kevowpd

What a sad story, ... the happy ending is missing, right? ... he goes to the neurologist, takes the recommended drug (Dopamine agonists without levodopa ) and gets better. …. Emh no…

it wouldn't seem that way

Bolt_Upright profile image
Bolt_Upright in reply to Gymsack

Thanks Gymsack, you reminded me of this meme:

Medical Advice

Hi David,I was 44, married with 3 children aged 8,6 and 2 when diagnosed. It was a huge shock. That was more than 12 years ago. Life has been very challenging but also richly rewarding in that time. None of us know what is around the corner- but for me hope is a precious and very relevant commodity. Not false hope. Please try and do some exercise and stretching every day and I really think you will feel at least a little better. Then maybe more new possibilities will start to present themselves… Good luck

Thanks for your reply Did you suffer from non motor symptoms too?

I can't begin to understand your non-motor symptoms - they sound like an incredible burden. I did have wild, violent dreams, and a fair degree of anxiety, but as for tiredness and brain fog, it's hard to tell - I was semi-exhausted from having 3 kids and working anyway! The biggest "help" was that my own mother died of cancer aged 51 (when I was only 12), so that gave me a weird kind of perspective and even gratitude that this was a long-form illness. This is probably controversial but I do think the Azilect and Madopar I have been on since the start have helped me maintain my emotional and psychological balance along with controlling my physical symptoms. I have been fortunate not to have major side-effects yet.

Strenuous exercise is the number one tool in your treatment bag. Try your doctor's recommendation and prescription, it will not be a huge amount of medication at this stage. Use the improvements obtained from taking the meds to exercise more and prepare for the future.

Hi David, I thought I was young at 54 when I was first diagnosed I am now 60so I totally sympathise with with how you're feeling.

I thought medication wouldnt make a difference but how wrong I was.

I have a brilliant neurologist who has helped me a long the way and you deserve the same and I sincerely hope you are getting the same support.

I started on low dosage of Sinemet and found it had little effect. But for the last 4 years I have been taking 5 x 250mg Sinemet and one Melatonin at night on a daily basis and it has transformed myself. Before this I had night terrors every night,cramping all down my right hand side, rigidity , tremor ,chronic fatigue, weight loss , severe constipation etc etc.

Yes I still have these issues but not on the same scale and I definitely have a far better standard of life now compared to where I started from.

Liase closely with your GP, Neurologist etc until you feel what is right for you. I know not everyone is the same and there are people with Parkinsons who do suffer side effects from medications. Do not give up David , I didn't but you need the proper medical support and you deserve it. Good luck on your journey and if there's anything you need to know don't hesitate to get in touch.

Kind Regards,

Jim.

Hi David, sorry to hear of your symptoms. I’d say you’ve made a good step joining this forum. There are a lot of smart people on this forum who provide a lot of interesting, hopeful, information. I’d recommend getting the daily summary email of forum posts as it’s an excellent way of staying in contact with other people and the latest news (there’s a kind of hive mindset - Parkinson’s news is found, linked, and often critiqued, faster and better than anywhere else I’ve seen!)

There are clinical trials in the UK for a variety of new treatments (caveat that many have placebo arms and are Phase 1 safety tests) but this may offer hope and / or a sense that you’re fighting back at the limits. I check:

cureparkinsons.org.uk/take-...

bepartofresearch.nihr.ac.uk

parkinsons.org.uk/news/save...

and of these an interesting one that might be worth reading up about is:

parkinsons.org.uk/research/...

I find it like checking my lottery numbers reading these studies - not got the jackpot yet but getting closer!

Finally, I have to recommend the Science of Parkinson’s website. It was the first thing that gave me any true sense of hope that this might be a marathon not a death march. It can take a bit of effort to read Simon’s posts as they are epic at times, but I come away with a better brain than I started with and am immensely grateful that someone so talented and knowledgeable has chosen to actively share that with us.

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