Depression and Apathy

[Tenafterten]

I’m 54 and newly diagnosed. I’m learning a lot here with this forum, thank you all. I started on B1 with Dr. C a few weeks ago. Not seeing a big improvement yet. My biggest challenge these days are non-motor symptoms. I’m dealing with some pretty tough challenges with depression and apathy. Many people write about staying positive, but I’m finding it difficult. Does anybody have any suggestions that might help? Thank you.

[Hidden]

1. Pick out a memory from your lifetime experience and focus on that on ocassion...

2. Find a political or charitable cause and get deep into through participation.

[Tenafterten in reply to Hidden]

Thank you Roy.

[Kia17]

Hi Tenafterten

I am 50 years old . In June 2017,I had different symptoms including depression and anexity but now live almost symptom free. What I have done include;

- High Does Thiamine

- Intermittent fasting

- No sugar

- No gluten

- Low carb diet

- Cycling

- MCT C8 oil

- Fast walk

- Vitamin D3/K2

- Mannitol

- Magnesium

- Healthy foods

- Yoga

- Enough sleep

- avoiding streesful situations

- Mindfulness practice

Hope these help.

Kia

[Tenafterten in reply to Kia17]

Thank you Kia.

[Oceanflow in reply to Kia17]

You are amazing! I wish I could kick my addiction to sugar. Did you find that part hard, or were you never a "sweet tooth" like me?

[Kia17 in reply to Oceanflow]

Thank you. It wasn’t that hard but kicking any habit is a bit of challenging in the beginning.

[Xenos in reply to Kia17]

Hello Kia,

May I ask you the type of intermittent fasting you use, and why this one (5:2, Daily window, 5 consecutive days,...)

[Kia17 in reply to Xenos]

Hi Xenos

I do Intermittent Fasting every single day with no exception. 18 hours only water + a cup of bulletproof coffee.

[jeeves19 in reply to Kia17]

Kia are you still on 3g of B1 out of interest?

[Kia17 in reply to jeeves19]

Yes Adam, 3grs Thiamine daily except Saturdays.

[nourilo in reply to Kia17]

Can you explain why you skip Saturday? Thank you 😀

[Kia17 in reply to nourilo]

Dr Costantini has suggested since he thinks 7 days is a bit of too much for me.

[nourilo in reply to Kia17]

Can you explain your regime for intermittent fasting? How many days per week and how many hours per day?

Thank you!

[Kia17 in reply to nourilo]

Hi

I do Intermittent Fasting every single day with no exception. 18 hours only water + a cup of bulletproof coffee.

[nourilo in reply to Kia17]

Thank you. I’m thinking of trying intermittent fasting for but for two days a week. High dose thiamine doesn’t seem to be working anymore😞

Initially, I had good results with HDT but now after four months those good effects have worn off. I started with 1g/day then reduced to 500mg/day. Now I just take it once in awhile.Don’t know what to do....

[Kia17 in reply to nourilo]

Please contact Dr Costantini. He will be happy to advise you as he has done to many.

[park_bear]

I second the RoyProp suggestion to get involved in some way with things that help others.

Qigong has been tremendously helpful to me, but it is not for everybody. See my report of my experience here: healthunlocked.com/parkinso...

[Tenafterten in reply to park_bear]

Thank you. I will check out the link.

[Johnny_joe]

I think you are doing well please do give it time at least you are under the Doctor’care. I ‘m having trouble contacting the Dr. I hd a big lull between my first contact and my most recent due o m recent move relocation

[Tenafterten in reply to Johnny_joe]

Thanks for the words of encouragement.

[Johnny_joe in reply to Tenafterten]

B-1

[Kwinholt]

I second that, do give it some time. We all get depressed and overwhelmed with this disease from time to time, so your not alone with that. Roy is right , try and find something else to focus on . I always remember there’s someone else out there that have things worse then I do , so I try not to ever say , Why me ? I still work full time and exercise everyday so I try to focus on my routine and getting involved in my marathon races. Take care and keep your chin up. Karen

[Tenafterten in reply to Kwinholt]

Thanks Karen.

[Natlp2]

This video has a lot of great info on non-motor symptoms: davisphinneyfoundation.org/...

[Johnmo in reply to Natlp2]

It sounds really helpful but like other videos on hu at the moment it won't stream properly. It's annoying that there is no consideration of nonmotor problems by practitioners. I'm finding it more and more rekevant

[Tenafterten in reply to Natlp2]

Thank you. I’ll check out the video. Looks to be very helpful.

[55andpd]

Hi tenafterten. I’m 55 newly diagnosed too. Can I ask what non motor symptoms in fact what subtle symptoms you have. I’m still in denial I guess.

[Tenafterten in reply to 55andpd]

Apathy and depression are the two big ones I’m struggling with now. Some irritability, fatigue and constipation as well. I’ve had these on and off for a couple of years, which my doctor has indicated was likely early signs of PD that I didn’t know of. There might be others, but these are the ones I notice and are impacting me.

[LAJ12345]

My husband suffers from the same problem. Here is a link from a little while ago where I asked the same question. There may be some comments from people that are useful for you too.

healthunlocked.com/parkinso...

I am happy to say he is gradually pulling himself out of his anxiety attack but I am not sure what is helping him the most.

Here is an update which I have already posted earlier with what I think may have helped:

Here is an update on Restore Gold as promised.

I’m pleased to say hubby has calmed down a lot and is starting to feel better. His hands which don’t work well and are his worst worry have been working better. Pre Christmas he was struggling to hold and rearrange his cards when playing bridge but he is managing to do this much better at the moment. His face is working normally😊 which is nice for the family as before it was a blank stare.

Possible reasons:

* Christmas and holiday is over

*sertraline is finally starting to work after 2 months

* mirtazapine cut right back down to 7.5 mg

* he is now taking Sinemet 2 x per day with a capsule of uridine each time. He doesn’t feel sinemet makes any difference whether he takes it or not but it makes him shudder when he takes it sometimes.

* he has been taking a tsp inositol (Hardy’s product), mannitol, and d-ribose each day along with his b vitamins including 500mg thiamine, 125mg niagen and vitamin c in a sipper bottle which he sips on during the day. I have been giving him extra b6 for his hands which may or may not be helping. Too many variables to tell.

* he has started back on restore gold 2 weeks ago.

* he has been taking digestive enzymes for a month

* he also has been taking magnesium threonate, magnesium citrate, fish oil, cod liver capsule for months

* as his hands are working better he is less anxious so it is a cycle that feeds on itself. Less anxiety and they work better which makes him less anxious and happier.

This week we have swapped out all the bottles of vitamins and minerals and replaced them with Hardy’s daily essential nutrients which is a product clinically proven to work for problems such as adhd and has been used for stress in post disaster situations. I have been replicating their proportions of vitamins with individual of vitamins for some time now so the amounts of these won’t change but minerals are harder to buy individually. hardynutritionals.com/produ...

I like this product as it is made in Canada so has stringent quality control, and has had a lot of research done on it and has balanced amounts of vitamins and minerals at the higher levels required by people suffering with mental health problems.

He will carry on with restore gold and other supplements he is already taking that aren’t in it, plus extra thiamine. This should simplify our daily regime!

In short too many changes to have any idea what is working but he is definitely better than he was 2 months ago, but still not completely back to where he was about 6 months ago. Ie he is not doing his daily qigong or hand exercises yet or doing any tasks around the house or go any where or do anything with me. The only thing he seems to be able to do is go to bridge twice a week😪

[Bazillion in reply to LAJ12345]

You have mentioned all the things he’s taking but not a thing about what he is DOING !. With Parkinson’s it’s as much about DOING as pills.Not knowing what his abilities are it’s difficult to suggest anything specific BUT we all benefit from exercise mentally and physically , and it doesn’t matter where we are with the PD there is s always something we can do.There are so many posts on the site re how exercise has helped check them out.You might want to look at the PD warrior 10 week programme.

[LAJ12345 in reply to Bazillion]

The problem is his anxiety was so bad he would/ could not do literally anything. He would/could not get up , change his clothes, have a shower, even eat sometimes. When they get that low no one can make someone do anything otherwise I would have made him as I know that exercise makes so much difference. He knows that exercise makes him feel better too but can not make himself do it. I don’t understand it but I have not ever been in that position myself.

[Bazillion in reply to LAJ12345]

This is not just anxiety this is depression and he needs help urgently.If you are in the UK you should have access to a PD nurse .Ours will come to the house if necessary.

Otherwise you need to talk with your GP and Consultant.

You are right no one can make him do anything, but professional help and support will enable him to make the choices and decisions needed to aid recovery. the longer he goes on like this the harder it will be.PD is enough to be getting on with let alone with depression to contend with.

[LAJ12345 in reply to Bazillion]

Yes, he has been under the local mental health crisis team over this period and is scheduled to see the specialist geriatric psychologist 4 February. We are in New Zealand and unfortunately everything grinds to a halt over Christmas with the summer holidays so this was as soon as they could get him an appointment with this specialist.

He says himself he is not depressed, but the anxiety is so bad he can’t bear it, to the point he feels he can’t go on living. I think it must be like a physical pain so bad someone wants to die so I don’t think it is necessarily depression. If the pain were to go away he would not feel like this.

[Bazillion in reply to LAJ12345]

What you are describing is depression and I’m really glad you have an appointment soon.

Depression symptoms can vary from mild to severe and can include:

Feeling sad or having a depressed mood

Loss of interest or pleasure in activities once enjoyed

Changes in appetite — weight loss or gain unrelated to dieting

Trouble sleeping or sleeping too much

Loss of energy or increased fatigue

Increase in purposeless physical activity (e.g., hand-wringing or pacing) or slowed movements and speech (actions observable by others)

Feeling worthless or guilty

Difficulty thinking, concentrating or making decisions

Thoughts of death or suicide

Having these symptoms will make you anxious but the underlying problem is depression and I hope that he soon gets the help and care he needs to deal with it.

[Bazillion in reply to LAJ12345]

Found this information you might already know about but if not it should be helpful.

As a carer it’s important for you to have support because it’s tough on your own. Accessing the info is very easy on the internet

parkinsons.org.nz/sitemap

carers.net.nz/

THE PARKINSONIAN

Resources for Carers

A number of excellent resources for carers as well as wider support are available from Parkinson’s New Zealand, Carers New Zealand, health professionals and other agencies.

PARKINSON’S NEW ZEALAND SUPPORT

Parkinson’s New Zealand and our Parkinson’s Community Educator Service support carers throughout New Zealand.

Our founders made sure that an integral part of our mission is to provide education, information and support to families and carers. They listen and advise and make referrals as needed.

Our Parkinson’s Community Educators also connect carers with support groups. They may refer carers to a number of more formal support mechanisms, including recommending a counselling service or to the Needs Assessment and Service Coordination agency (NASC).

PSNZ was a founding member of the Carers Alliance, which started 10 years ago.

GOVERNMENT SUPPORT SERVICES

Using NASC services is the irst step for a person seeking Government-funded disability support services. Services

may include help with personal support, meals, household management, carer support, day programmes, and respite support provided by rest homes and private hospitals. They are also a good source of information about other support agencies.

Every carer should read the Government’s helpful Guide for Carers. It is a good place to start and has a lot of practical information about getting help. This resource has been updated by the Ministry of Social Development and other government agencies. It can be downloaded from msd.govt.nz or copies can also be requested by phoning Work and Income

on 0800 559 009.

The resource includes information about government funded services and supports available for carers such as inancial help, NASC, help at home, respite, making and resolving complaints, equipment and modiications to your home.

CARERS NEW ZEALAND

Carers New Zealand is an organisation especially for carers

of people with a disability. They have recently completely revamped their website to help keep you informed about issues and developments important to carers, how to complete an emergency care plans, stay it and well, and lots more.

The Carers NZ website also has some new resources and information:

Time Out is a respite planning guide that has some great

ideas about proactively planning respite breaks and time out each day. The Meet Ups Tool Kit is designed to help organise

fun get-togethers. They are also planning webinars and are interested in your ideas for upcoming webinar topics. There is also a questionnaire to help identify carers as often family don’t

recognise their role in the word ‘carer’ so don’t access the resources and support available.

Carers can visit the Carers NZ website to download a free information pack, which contains the Guide for Carers, the latest issue of Family Care magazine and other useful information every carer should know about.

Family Care is a quarterly magazine with helpful articles to help self-manage common caring issues at home. To request a free sample copy, phone Carers NZ’s National Carer Resource Centre on 0800 777 797 or email [e-mail]

Whether you’re new to caring, or have experience, these resources will provide helpful information.

Caring can be challenging at times but there is support on hand to help and these resources can show you what support is available.

OTHER RESOURCES AND WEBSITES

• parkinsons.org.nz/carers-an...

• Work and Income

• Ministry of Health information on Respite Services and Carer Support

Parkinson's Community Educator Service

There are over 30 Parkinson's Community Educators across New Zealand. They provide education, information and help people make informed decisions about living with Parkinson’s.

Parkinson's Community Educators can provide:

Home visits. These provide individualised advice through a personal assessment. Our Community Educators work with the person with Parkinson’s, their family and carers to provide information and support to an agreed plan that promotes best health and lifestyle.

Support groups for members with similar needs or issues. This may include groups for people with Parkinson’s, carers, or people with early onset Parkinson’s. These groups come together to share coping strategies, experiences and are a chance to establish social networks. These meetings also provide relevant information and educational opportunities, and speakers.

Referrals. Your Community Educator can give advice and liaise with health professionals and others who work with people with Parkinson’s in the community, as appropriate. For example speech language therapists, occupational therapists (who can arrange things like handrails or bath seats, they also can help you learn new ways to do daily activities) and physiotherapists.

Advice on monitoring of medication. Parkinson’s medication routines are unique to each individual and your Community Educator can help with information about managing side effects, ‘on and off’ periods and sleep problems.

General advice. If you need advice on how to arrange mobility vouchers, parking permits, home help and other general assistance, your Community Educator can help.

Advocacy. Need someone to work beside you or speak on your behalf? Our Community Educators can assist with conversations with hospitals, specialists and employers.

Social activities provide a sense of togetherness and give members an opportunity to meet, talk and support each other during social outings. Your Community Educator will be able to tell you about the social activities held in your area.

Exercise and other therapies. Your Community Educator can let you know what programmes for people with Parkinson’s are available in your area. This may include exercise, physiotherapy, hydrotherapy and art or music therapy sessions. Research has shown that exercise is a vital component in the overall management of Parkinson’s.

Educational seminars. Many of Parkinson’s New Zealand’s branches and divisions organise educational seminars. Education seminars provide access to a variety of speakers including neurologists, Parkinson’s researchers, pharmacists and other health professionals. Your Community Educator can advise you about any seminars that may be occurring in your area including those presented by other organisations that may be relevant.

Facilitate family/whanau meetings. Community Educators are available to meet with family/whanau to discuss how they can best support their family member. They can provide information about Parkinson’s to give family/whanau a better understanding of the condition. They can also provide information about respite care, both day programmes and short term care, available in your area.

To find out who to contact and what services are available in your area head over to our Find Help section.

[LAJ12345 in reply to Bazillion]

Ok, thanks for taking the time to reply. He is on the sertraline and mirtazapine for the depression at the moment and has been on various combinations of antidepressants for about 4-5 years now and under various psychiatrists but every Christmas we go through this with the anxiety so I am not convinced they actually work that well. He has clonazepam for emergencies for anxiety which help but he tries to only take these if he is really bad as they are addictive and make him so dopey he can’t do anything.

But over the last few days he has felt a lot better than he has for months and the only thing that’s new is he has swapped out his individual vitamin and mineral supplements for the Hardy’s nutritional daily essential nutrients which are clinical strength and only available with GP or psychiatrist approval, and added Hardy’s inositol and Hardy’s probiotics and greens, plus he has restarted taking the Restore Gold product. Not sure if that is what has made the difference but hopefully his increased energy and mood will remain😊

He actually does not have any physical symptoms to look at him that would lead anyone to think he has Parkinson’s, except the way he walks with his hands in front. Physically he is able to do anything he used to do, it is the battle with the mind that is the problem.

[nldr18 in reply to Bazillion]

A good reminder about activity. Could you please let me know what the 10 week PD warrior program is, I have not heard of this before. Thank you.

Natasha

[Bazillion in reply to nldr18]

pdwarrior.com/

When I first started the programme I got a book and downloaded the programme from the internet .In the UK there are a few centres that have rolled out the programme. Now there is an app! It really is a good programme as you can work at your on level and as you improve push yourself more. The programme is specific to PD and addresses many issues. Good luck!

[nldr18 in reply to Bazillion]

Thanks so much for the information Brazillion.

Natasha

[Tenafterten in reply to Bazillion]

Thanks Bazillion. Sage advice.

[Tenafterten in reply to LAJ12345]

Thank you for sharing LAJ12345. Sorry to hear about your husband. Hope is feeling better.

[LAJ12345 in reply to Tenafterten]

Yes, the last 4-5 days he is feeling much better. Thanks😊

[janisjose]

I was diagnosed 2011... I've been into requip and levodopa right now and gradually accepting things as it is.. I was just 30 or 31 then and I still manage to work.. go out and live, the drive of being positive must be worn by everyone who has pd.. because it's the only way you can enjoy life, having a positive outlook out there! Get up, drink your med and face life... cheer up!! 🤗🤗🤗🤗

[Tenafterten in reply to janisjose]

Thanks janisjose.

[janisjose]

Hi.. just an addition to my previous response, I believe I had the most effective combination of medications right now.

Requip 8mg + Levodopa 250/25 1 capsule each taken empty stomach in the morning as soon as I woke up. Levodopa be taken every 6hours and I'm perfectly normally functioning the whole day...

[rebtar]

I struggled with depression and anxiety for years before PD symptoms started (5 years ago). I've thus taken anti-depressants for a long time, but never with an optimal response. although they did help.

Since PD symptoms started and then 4 years ago diagnosed, I began to adjust diet, take a lot of supplements, exercise daily. I really struggled with the shock of the diagnosis and my mood was a real challenge. I tried psychotherapy, TMS, CBD, and other methods with some success but I was still struggling.

About a year ago, I began ketamine assisted psychotherapy , which helped a lot. I can heartily recommend it, especially to people who are a bit adventurous. I felt a lot better. The method where ketamine is combined with psychotherapy is more effective in my opinion than just going for intravenous sessions at a clinic. I also started B1 around the same time. I had been resisting starting C/L and my PD physical symptoms were still very mild. I was planning a trip to Italy last fall in November, and I decided to start C/L so that hopefully, my symptoms would not be a bother on the trip.

To my surprise, the C/L brought my mood to essentially normal, the best I've felt in many years. I wasn't expecting that. I'm taking a small dose: 1/2 of a 25/100 three times daily. My other symptoms are pretty much gone, which is an added bonus. I continue psychotherapy, although I have no need to continue with ketamine for the time being.

So I would say that why helps me with mood are 1. anti-depressants; 2. exercise; 3. C/L, and 4. psychotherapy both with, and without ketamine. It's been a journey. I'm so glad to finally be in a good place. I hope you can find some help with this, and hope. Keep trying things and you will find your way.

[Xenos in reply to rebtar]

Very informative. Thank you.

[Tenafterten in reply to rebtar]

Thank you rebtar for your account and explanation. Interesting to hear that C/L helped with your mood. I associate that with more motor symptoms.

[rebtar in reply to Tenafterten]

I did too. But my neurologist told me many people find it helps their mood. If I had known I would have tried it sooner.

[JeanieBeanie]

My husband has never had depression and he was diagnosed 25 years ago. He has taken Silegiline all this time and he wouldn't be without it. The newer version is Rasigiline.

[jeffmayer]

I always find any exercise of any sort will be a massive help I know you've heard this before but a positiveattitude is a massive help if you think negative thoughts it will drag you down don't let it win

[alaynedellow]

Mannitol from syncolein.com. A natural artifical sugar. Cured my apathy gone from where didnt care if i died to being glass half full. And yes glass is half full, we not beaten yet. Research PD and get to know your disease and ask anything here someone else been there first. It is a shock but as it doesnt go away you Accept it and learn to live withit. Accept the bad days as just a bad day because generaaly tomorrow is better, be kind to yourself. Exercise and get some mannitol. Good luck

[Tenafterten in reply to alaynedellow]

Thank you alaynedellow. Reading and learning now. Like drinking out of a fire hose. A bit overwhelming at times, but it all helps.

[TheGimba]

Hi,

My husband has suffered for many years with apathy. My only advice is that depression and apathy are two totally different issues and are treated differently. Depression is sadness, regret, some guilt, loss of interest, sleep issues, etc. Apathy is sort of lack of feeling, no sadness or regret or guilt, just kind of a nothing feeling. Many mix these two up. Depression is very treatable, meds, however, my husband was given meds for depression but actually has apathy, they just put him to sleep. He has always said that he is NOT depressed, he just feels like his emotions are blunted, he simply doesn't care about anything. Apathy is less treatable unfortunately, at least from a pharmaceutical stand point. I wish I knew the cure for apathy. I brought this up at our latest appointment with neurologist, he just laughed it off, said oh he doesn't have apathy, (after meeting him for three minutes!) apathy is just something older people get. My husband was so full of life before, the smallest thing would interest him, so curious. I miss him.

[Tenafterten in reply to TheGimba]

Thank you. Not good to hear a neurologist make light of a serious symptom.

[LAJ12345 in reply to TheGimba]

You are describing my husband completely! He says he just doesn’t care about anything. They treated him with mirtazapine for depression that basically turned him into what looked like an 85 year old dementia patient sitting in a chair all day with a blank stare. He is 58. The psychiatrist says He thinks it is depression but you are right, I don’t think they are the same. Now the mirtazapine has been decreased to 7.5 mg he is showing a few more signs of wanting to do things. What anti depressant is your husband on?

[alaynedellow in reply to TheGimba]

Try mannitol from syncolein.com

[NRyan]

I'm 53 and have known for 2 years. The buddhists believe depression is your focus turned inward. My biggest symptom yet is fatigue and apathy. IT IS DEBILITATING! Especially as a working mom of a very rebellious teenager. I have discovered that stress can turn it on immediately. I try to avoid stress and keep busy with one task at a time. I reach out to friends to get together, it takes my mind off myself. I often tell them I may not talk much but want to hear all about them. It takes pressure off me to speak and keeps me from going off by complaining and feeling sorry for myself. When I can't stand laying in bed one more minute (I am a former very high energy person) I go for a simple walk. It often gets me going enough to have momentum take over. I have found DIET/SLEEP impacts my mood tremendously. I eat no meat (except fish), dairy or gluten. I avoid sugar as much as possible. No artificial colors, flavors, preservatives, artificial sweeteners. Whole foods-plant based. It sounds overwhelming but instead I am looking at it as a new skill I am going to learn. I try to make searching for and trying a new recipe like a treasure hunt. I take one step at a time. My house is a bit of a mess (for me), but I let things go until I have the energy unless it is vital. It really makes me re-evaluate my time in this world and helps me to re-prioritize. I am a patient of Dr. Mischley and follow her recommendations for supplements, diet, etc. I do need to exercise more but I am working on that....one step out of the hole at a time. Surround yourself with support, positive people, live in the moment. FInd someone to inspire you....Jimmy Choi, Christian Bandu, anyone one with PD kicking some ass. Check out Parkinson's Disease Fighters United group on Facebook. There is a reason we all have PD, find out what it is. For me, it was a wake up call to change the way I was living my life. Hang in there, it does get better with time when you realize you have a great life to still live.

[Tenafterten in reply to NRyan]

Thank NRyan. Appreciate the detailed response. I’m looking to see Dr. Mischley as well. Stress I noticed helps to bring on my tremors. But the apathy funk is one that seems to linger. Thanks for the positive outlook.

[LPalmer]

Hi I’m 57 diagnosed 6 years ago

Also have a lot of non motor symptoms.. apathy and depression what Kia said I do as well

I use cbd oil.. exercise biking works well as can do more as walking can be a little more difficult at times .. yoga... meditation .. I lead a stress free as possible life lol...

However sometimes that darn anxiety comes for no reason and is very difficult 😳 I have never experienced that prior to Parkinson .., I am normally a very positive and upbeat active person .. takes a little more work now !! Recently I just had to get some anti-anxiety medication from the doctor just to fly as we are travelling right now other than that I try to do as much natural as I can but it worked well for what I needed it for

[Tenafterten in reply to LPalmer]

Thank you for sharing.

[Bron60]

Find a support group, preferably one with an exercise program focus. Fun, fitness, friendships, focus ........

[Enidah]

I am so impressed with all the supplements people take especially when they're keeping track of all that for their partner. It's hard for me to find a patience to do all that. Bravo for all the dedicated caregivers that we hear from.

Something that also came to mind reading some of these post is it we cannot know what is going on with another person's PD. Robin Williams was condemned by many for his suicide and then it came out that he had Lewy Body dementia. Good lesson not to judge as we don't know what it's like to live inside that other body and that other mind. We don't know the burden others carry.

[PDGal4]

Tenafterten

Lots of good thoughts and advice here. I'll add to give yourself time. You are newly diagnosed, you are grieving. It took me two years to get past stage 1 of the grief period--denial.

I was diagnosed almost 7 years ago, age 57. Had major fatigue, which a blood test showed low levels of B12 and a subsequent blood test low levels of D. I supplement with both. So I'd suggest a physical and blood test to take care of any imbalances. I also exercise most days (walking), go to yoga classes about 5 days a week; except for some cheese, I don't eat dairy (easy, I'm also lactose intolerant); am back again on gluten-free diet (fell off that wagon over the holidays, but feel much better & sleep better being gluten-free); eat little sugar (although been into chocolate snacks lately) and lots of fresh veggies; meditate; have a great women's support group which meets once a month; have a therapist I talk to once a week; visit the acupuncturist twice a month.

These work for me. Also having a routine and avoiding stress as much as possible. Everyone's mileage varies. I've experimented over the years with various supplements and diets and still do so. I do struggle to find motivation to begin a task that requires organizing and thinking; sometimes cannot conjure up discipline and drive. But everyday is different. Accepting the notion of Impermanence along with other Buddhist concepts, living Mindfully, has also been amazingly helpful to me. It is a journey taken one small step at a time.

[tomatera]

My heart goes out to you! I have the same problem. Unfortunately when in depression it exerts it’s own power over the positive thoughts you try to keep. I did get some some relief with a new drug called Xadago. Depression is less often and apathy is much less. It boosts dopamine availability and subsequently serotonin. But nothing seems to eradicate the depression everyday.

I see new things out there that have some promise. Just hang in there.

[maureenl4]

I

[Tenafterten]

Thank you for sharing. 😀

[faridaro]

When I am feeling down which usually happens on daily basis lately I resort to what I call "the ploy of joy" - recalling times of misery (like dealing with sudden onset of cardiac arrhythmia during a trip, tooth pain, urgent need to go to the bathroom when there is none around, etc) and try to appreciate the fact that I don't have to deal with this misery at the moment - just putting things into a perspective...

Since I am being late here to the party not sure if anyone has suggested writing a gratitude journal - I know someone who was immensely helped by writing every day 5 things she's been grateful for however I have not tried it yet although some research has shown that it's a successful tool against depression.

[rideabike]

I also have a daily battle with apathy although depression is not as bad as it used to be. Loss of pleasure in things I used to enjoy is difficult. It was only when I read that others with PD had similar feelings that I was able to come to grips with it.

On this site an article about amino acid depletion from loss of dopamine helped me understand it is an organic problem, not mental illness as a doctor once told me. ncbi.nlm.nih.gov/pmc/articl...

Dr. Marty Hintz is one of the contributors. There is a chart showing the depletions so I added quite a few daily amino acid supplements to the mucuna pruriens I take each day. There was no way I could do the amounts recommended but even with the ones I'm on I see a big change and may work up to higher dosages. Whenever I went off of them to see how I would feel I felt depressed and disassociated again. I also take 500 mg B1 each day. I hope this article helps you. Linda

[Tenafterten in reply to rideabike]

Thanks Linda.

[faridaro in reply to rideabike]

Thank you Linda for sharing this article. Could you tell the difference in motor symptoms from taking amino acids?

[rideabike in reply to faridaro]

I find there is a difference in non-motor symptoms rather than motor. About the only thing that helps motor is Mucuna Pruriens although that also lifts my moods somewhat. Amino acids lift mood in a more sustainable way as well as curb apathy and depression. I have not had depression this winter which is a first for many years, except for a few blue days. I still feel a strain being around people too much or too long but it's not as bad.

When I went off the amino acids for a few weeks, within a week felt less inclined to socialize, go for a walk and became irritable with more anxiety. And I'm super clumsy. There is only me to get irritable with so that didn't go well. 😟 It's a fast downhill slide but after starting up again within a few days I felt my moods lift and more ability to focus.

It's not like being on antidepressants in that they sometimes take awhile to work and you can't quit them cold turkey. I doubt that amino acid therapy could hurt anyone in the long term. Maybe the pocketbook initially but it's worth it.

The reason why I stop sometimes is I have swallowing problems and sometimes can't stomach another pill. I rebel. I guess I have to work on my attitude somewhat.

I hope this answers your question. Linda

[faridaro in reply to rideabike]

Thank you Linda for taking time to explain. I find these days that I have very low threshold for frustration and minor difficulties throw my mood off balance which I see as a sign of neurodegeneration and this awareness makes me feel even worse. Have to figure out how to deal with it and so grateful for this forum where people understand our issues.

[rideabike]

Just a note about apathy. It often feels like I'm relearning to connect with people or do things I formerly enjoyed doing, similar to the rewiring of the brain after a stroke. They need to relearn or make new pathways in the brain to walk, talk or do the things they did for themselves. I have to try to look at people, read their facial expressions and engage with them. It takes a real effort to not be impersonal and it's tiring sometimes but there are small rewards and some large ones.

[Tenafterten in reply to rideabike]

Hi Linda. I finally had a chance to read over the journal article you posted. Some great stuff but also some very technical stuff that I'm trying to get my head around. As I initially mentioned, I'm somewhat new to the game here and trying to learn as quickly as I can. I have been looking for alternative treatments before diving into to the usual C/L regimen right away. Like you, I am taking 500 mg of B1, for a month now. I haven't seen much if any improvement yet, but want to give it time.

Your mention of mucuna prurient is the first time I have heard of it and had to look it up. Appears to be a natural form of L-Dopa. Could you share what amino acids you take and how you determined the right dose? This is one line from the reprint that jumped out at me, "For optimal results, L-dopa, 5-HTP, L-tyrosine, L-cysteine, and B6 must be administered simultaneously at dosing values uniquely defined for each patient."

Seems as though my learning is a bit like drinking out of a fire hose these days. Again, thank you.

[rideabike]

Yes I think the combo is what works. I now take Zandopa (Mucuna P.) 7.5 g that I need 2x a day. I take L-Tyrosine 500mg., 5HTP 100mg., B6 50mg., L-Cysteine 600mg., B-1 500mg. and D3., 1000. I added L-Lysine 500mg. It mentioned folate but I'm questioning the safety of it as some posts did. I know this is less than the website said but it helps a lot.

Before bed I take L-Theanine 225mg. and 1 or 2 mg melatonin and if I wake up take GABA 100mg., and magnesium 200mg. which puts me back to sleep and all are very calming. I still shake when I'm "off" but not as much if I keep to these doses. I need to take krill oil, MCT oil and Acetyl L-Carnitine, good for the brain... all of which I just ordered. I have salmon oil but apparently krill oil has phosphatidyl choline in it which is very good for the brain too.

[Tenafterten in reply to rideabike]

Wow, I see what you mean when you mentioned that you were already taking a number of pills. I’m trying to take in all that you’ve indicated here. That’s great that it’s working for you.

Are you working with a doctor with these supplements or are going about it on your own? One last question, how did you determine your dosage levels?

[rideabike]

No not a doctor. Like you I'm trying to use natural things. I tried pharmaceuticals with no satisfaction and find more beneficial treatments online or HealthUnlocked. There are some on this site who are trying the Dr. Hintz protocol and it seems to work but very expensive with his guidance. I took the dosage levels from the website and did the starting doses and use what I can find locally or online. I don't think the amounts are far off. If I feel more productive and less depressed it's a plus for me. That's all I expect. The rest will take care of itself in time. Nothing's perfect in this world. PS the L-Lysine is not for PD but for collagen which I need for my knees. That was a mistake.

[Tenafterten]

Thank you for the clarification on this. Interesting that you tried pharmaceuticals and didn’t get satisfaction. My perception is that most PD patients go this route initially or at some point. Especially those that are inclined to just do what their doctors prescribe. I find people on this forum to be more proactive and looking for something beyond ‘the gold standard” which many docs rely on. Again, thank you for your time and care here. Wishing you well. 🙂