My husband is starting on this today for anyone who is interested. I will try and update progress over the next few months trial to let you all know if it is making a difference.
Restore Gold starting today - Parkinson's Movement
Next, give fourty days to high dose thiamine HCL
He has already been taking that for quite a few months too. And mannose. And other b vitamins, fish oil, magnesium.
His main current issues are loss of fine motor skills in hands, urination problems , extreme anxiety. These all seem to be getting worse.
He has been up to 3 g per day of thiamine and had improved masked face and depression but was coming off mirtazapine at the same time and on mannose etc too and diet changes so hard to tell what helped. Also lots of exercise, qigong, hand exercises, lsvt.
The hands and anxiety have got worse rather than better so he stopped b1 for a few days then dropped it back to 1 g per day but still getting worse so not sure of correct dose. The pull test he has always performed well on so can’t really use it to determine dose as he doesn’t need to correct himself.
We tried writing to Dr C but after an initial reply acknowledging email he hasn’t replied again to subsequent emails.
I can't prescribe. Stop mirtaz and mannose. Have neuro prescribe C/L. Wait three days and start hi dose thiamine hcl and C/L
He has finally got off mirtazapine a few months ago by weaning it off over 3 months. Why stop mannose?
Roy - why would you suggest that someone start C/L (through a prescribing neuro) who isn't already on it? many people prefer to delay that as long as possible I thought? I'm new to this "game" though - just diagnosed 2 years ago and still on azilect only. I have a lot to learn. (Also, is it more beneficial to be on C/L at the same time as thiamine hcl? In other words, will thiamine work if on azilect only?) thanks!
I viewed the following video and the first viewing, the video did not contain the entire speech. The second time I clicked and played, success.
Doc. Stanley Fahn
World-famous leader in movement disorders, Dr. Stanley Fahn was the keynote speaker discussing myths and misconceptions in PD, and several members of the University of Florida Center for Movement Disorders and Neurorestoration also spoke and participated.
Myth 4. “No response to Sinemet 25/100 three times a day is considered a non-responder.”
a. Each person should be treated individually and each may require a different dosage of Sinemet to get a response.
b. Some physicians fail to push the dose after it reaches 300 or 600 mg/day.
c. My “limit” is 2,000 mg/day.
From FAQ document.
32. Do people taking Levodopa and following Thiamine protocol develop Dyskinesia?
A: I have consulted with Dr Costantini about your query and I do confirm that on the basis of our observations: our patients who do use l-dopa in addition to thiamine have not developed dyskinesia. This is true for patients who are under treatment for 3 to 5 years (we invented this treatment in 2013). However, you should inform Dr Costantini or myself about your current l-dopa regime and he will see if it needs to be adjusted.
We do consider the timeframe above “long term” but further studies are necessary to confirm that patients will be dyskinesia-free lifelong though we are optimistic.
We observed that the right dose of thiamine can lead to an improvement of the symptoms between 50 and 80-90%, but in order to push towards the complete regression of the symptoms the correct dose of l-dopa should be coupled to power the dopaminergic motor circuits. L-dopa then shall no longer lead to DYSKINESIA if used together with the high dose thiamine. The treatment is based upon the hypothesis that the disease leads to the death of neurons through its interaction with the intracellular metabolism of thiamine. This action can be blocked by the administration of high doses of thiamine. The neurons, once no longer burdened by the primary cause of the disease, restart their activity and this leads to the improvement of most symptoms. Continuing ...
1. HUBERT H. FERNANDEZ, MD
+ Author Affiliations
1. Cleveland Clinic Lerner College of Medicine, Center for Neurological Restoration, Cleveland Clinic
I thank Dr. Keller for his thoughtful comments. They are most appreciated.
It is true that with availability of generic ropinirole and pramipexole, there are now cheaper alternatives to levodopa. Nonetheless, levodopa remains the cheapest and most efficacious medication for Parkinson disease to date. Whenever levodopa is compared head-to-head with any dopamine agonist, the general results remain consistent: levodopa affords better motor improvement with lesser side effects, but is more likely to lead to motor fluctuations, specifically dyskinesias. Therefore, in general, levodopa is the first choice in elderly patients where tolerability may be an issue, whereas a dopamine agonist may be the initial treatment of choice in younger Parkinson patients, who are able to tolerate the drug better and have a higher likelihood of developing dyskinesias.
Doctor Costantini strategy that I find helpful "thiamin hcl stops the progression forever...".
Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.
I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –
Doctor Costantini - “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.
Google search: Doctor Costantini Parkinson
Dr Antonio Costantini, email@example.com
Thanks for sharing. Update us in 6 to 8 weeks!
Why mannose instead of mannitol?
Mannitol seems to be helping me.
Mannose and mannitol are the same thing. He is using synuclein.
***discovered they aren’t the same thing!
hi laj12345 well i take 2 grams in the morning 2 grams at night thats thiamine. 1 gram of mannitol in the morning, the thiamine power. i take with frozen berries defrosted as its hard to take by its self.is he taking any other meds.i also take 4 madopar tablets 200/50 every day.hope this helps.regards.
He hasn’t been on any meds so far but today the dr at the mental health place have given him sertraline (Zoloft) for long term depression and anxiety, and zopiclone for sleeping if required, and clonazepam for emergencies if very anxious to immediately calm him on top of the regular long term one plus sinemet
Have you looked into melatonin for sleep ? How long had he been on B1 ?
No, he is on so many supplements but I was a bit worried about adding any brain chemistry altering ones without doctors say so although I guess they all are in a way. He has been on b1 since June from 1 g per day to 3 g per day. No dose seemed to make much difference and he has continued to feel worse overall but at the same time he has weaned off the antidepressant which meant he is anxious and not sleeping. Hopefully the new meds will control the anxiety then that should help symptoms and we can see what symptoms are left.
When things start to go haywire for me I analyze each supplement/ herb/drug. I systematically check the drug interaction checker for everything I'm on. Then I look at each item's overdose symptoms. I always research like crazy on this site too. I remember being severely anxious for no reason.....twice. Once, it was too much b1, the other was when I wasn't taking magnesium.
Yes I do that too. Trouble with b1 I am not sure if he is on too much or too little. And b vitamins. I thought maybe it is too much so cut them back, but then he gets even worse. No dose I try seems to help, but he has now started sinemet today and new anxiety meds so will see how that works out.
Good luck and please keep us posted regarding Restore Gold.
I checked zoloft and zopiclone, and saw anxiety as a possible side effect for both. Go figure.
What's the longest B1 vacation he's had ?
Hi sorry just saw this. He had a break for a week and seemed to get worse but then halving and going back on he only lasted 2 days getting better before getting worse again. Now he is taking 1 x 500mg with his other bvitamins and inositol dissolved in a big sipper bottle and he is sipping that through the day. Honestly his anxiety is so bad I am not sure what is doing what any more.
Well the first few weeks on Restore Gold hasn’t gone too well. Possibly not the fault of the product but hubby is taking a break from it just in case.
He has had his anxiety return with a vengeance. He had stopped mirtazapine 30 mg weaning off slowly over 3 months from August and had been clear for 6-8 weeks then insomnia and anxiety hit a high again. He had been feeling good and was smiling and interacting again but the thought of Christmas, school holidays with the kids home being messy and noisy, and going away for a week are making him worry. Suicidal thoughts etc. so back to the mental health crisis team. Over that same period he had stated RG so it is not really having a fair test.
Having said that it has green tea in it which when he has tried that for a couple of months previously his weight plummeted over 10kg in 6 weeks. I asked the manufacturer about caffeine in it and they use decaf green tea which only has 8mg per dose which they say should not affect him. They say it should calm him and not make him anxious due to the theanine in it.
It also has taurine which is an ingredient in red bull so would this in combination with caffeine from his coffee have an effect??
There is also ALpha lipoid acid which is a chelater of mercury which might cause anxiety if it drags more mercury into his system. What is the likelihood of ala which is swallowed mobilising mercury from amalgam fillings? There seems to be some evidence it might then other evidence that says that it doesn’t.
Anyway he has now been loaded up with sertraline for depression which has given him more anxiety , insomnia, and restlessness so he couldn’t get comfortable. So then they gave him clonazepam, zopiclone for anxiety and insomnia,but he was still suicidal and feeling worse, so they have doubled down on the sertraline and added mirtazapine back. 😞
He now feels dreadful, won’t exercise and won’t get up. And the doctors and psychiatrist have all gone on holiday. I am at my wits end as he is worse than ever.
I am wanting to swap his regime of vitamin supplements over to a product called Hardy’s essential daily nutrients which has all of them in it and is made in Canada under stringent conditions but the NZ supplier can’t sell it to me unless the psychiatrist says he will wean him off the medication if his symptoms reduce so he isn’t over medicated. They say because he is already taking most of the ingredients he is likely already overmedicated and that is why he is experiencing all the side effects. Unfortunately the psychiatrist does not believe in the efficacy of nutrients and will not authorise any reduction. His method is medicate then if there is a side effect add another drug on top....
Hubby has had DNA testing that says he is a slow metaboliser of pharmaceuticals but the psychiatrist also says this is unproved science, not enough evidence blah blah blah. He prefers to go with the 85% rule where most people have good results. Unfortunately hubby is in the 15% that don’t, which is probably why he has PD in the first place. Dr doesn’t have to live with it all.😣😂🎄not very merry Christmas. Sorry for the rant.
Sounds all very difficult and stressful. Is he taking l dopa? I couldn’t work it out?
For his gut health have you tried bone broth? My integrative GP was a huge fan of it to restore the good bacteria balance.
Sounds like you need a break - there is only so much you can do for someone.
Yes, he takes bone broth regularly and sinemet which makes no difference to anything. Also tried mannose, b1, which he is still on, had tests for gut, organic acid, heavy metals, every other blood test . His gut bacteria were weird with bifido all missing so have been to natural dr and been on berberine, allicin, alternated with probiotics, lots of Veges etc, little meat, little fish, legumes, beans, nuts, fish oil. Tried everything we can find. Nothing seems to be able to overcome irrational fears which sees to be the cause of the problems. Had counselling but he reckons it doesn’t do anything. He has always been very unemotional.
Hi, I was going to get bone broth for fatigue until I read that it contains heavy metals. It seems the metals are in the soil, and animals grazing eat grasses containing the metals, which are absorbed into their bones. Read that it's in chocolate too
Oh dear. I am in New Zealand so hopefully ok here? But peopl3 have been eating bone broth for ever😕
I just make it from chicken bones. Everything is so complicated
I think it is both natural in soil, and unnatural from pollutants that come in the air from the elements. NZ would still get pollutants carried by wind from all over the world. Read up on bone broth, and heavy metal contaminants, I was shocked.
BTW, I've read that mucuna helps with depression too.
Thanks for that tip. He had his heavy metal hair analysis and has arsenic at the top of the low range, nearly into the bottom of medium, and mercury there too. Mercury blood test was 10 Which is lower than mine but I have had a huge amalgam filling a couple of years ago where the dentist drilled it out then said sorry have to use amalgam as too big for white filling. I was really cross. I just decided to have the whole tooth removed recently as I was feeling odd so hopefully levels will drop from here.
So mucuna more than sinemet for the depression? I will have a look at that.
Sounds like you have been very thorough.
If the sinamet doesn’t help though, does that mean he doesn’t have PD? Did it ever help?
Your situation seems exhausting.
Yes, I have wondered that myself. He has only just started it and had tried Mucuna Pruriens too but he doesn’t have tremors . His mask face seemed to resolve with stopping mirtazapine and b1 not sure which as they were together. He has a funny gait and hands that don’t work and urinogenital symptoms but otherwise not many normal symptoms. I’m a bit worried it is MSA.
I did it for a while it’s in to help a little especially after I read instructions and started avoiding chlorinated water
Sorry, do you mean you took Restore Gold? At the 16 tablet level? Which instructions?
Hi I took in a store in the liquid form. The instructions indicated that it will be more effective if the patient does not drink chlorinated water. Therefore I began to drink order from a trusted that is water from a trusted Vendor oh artesian water. Pardon the miss spell I am using a voice app
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.
* 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😪
Hi, Is your husband still improving ?
Hi, after starting the Hardy’s his mood quickly stabilised, and his anxiety has completely gone. He hasn’t had any relapses of anxiety despite a few quite stressful situations. His apathy has completely gone and he is arranging things to do, and getting up in the morning. Going walking with no prompting and is showering, shaving etc which I was having to push him to do around Christmas. His face is working again, and he is laughing and joking which I haven’t seen for years. I think his Parkinson’s smell which was on his clothing as gone, at least to my nose. His sense of smell seems to be slightly improving.
He still has the gait where his arms won’t swing, his hands don’t work very well, he has increased need to urinate and when he needs to go he has to go immediately!
He was having monthly bouts of feeling sick like he is getting the flu and having to sleep it off for a day but he hasn’t had one of these for months. These have been ongoing for years so that’s an improvement.
His roseacea seems under control as long as he follows the strict diet and takes berberine and allicin alternate weeks with probiotics. If he stops that for any period it flares up again but at least he is off the doxycycline.
So not perfect but changes will be slow I imagine. He hasn’t got worse in any area from where he was a year ago at least.
He is still taking the restore gold as well but has stopped the inositol as his anxiety is gone but will take it again if he needs it.
He is only taking 1 sinemet tablet first thing in the morning and is prescribed 2x3 times per day.
While reading this I'm thinking wow, these are incredible strides ! What you mention in the first paragraph is amazing. I know you've written about Hardy's before. Do you prefer it over Restore Gold ?
Well he had been taking the restore gold for about a month before starting Hardy’s so it is hard to say which has helped with the long term improvement. He tried taking the restore before on another occasion for a month but it seemed to make him more anxious and hyper so I stopped it.
The Hardy’s den definitely is the only thing we have tried that has had such a sudden and noticeable effect within days. It could be it was just the final piece of the puzzle on top of the other things, or it might have been one or more of the ingredients in it that made the difference. Earlier on he was taking the mannitol and b1 at the same time and that did help a bit with the face and he is still taking both of them as well.
I do wonder if it is a bit of a cycle where one thing helps but causes a shortage of something else, then add the next thing and it fixes something else then runs out of yet another thing etc. maybe you need all the thing he is on for the Hardy’s to work. I just don’t know. But while it is working I am loath to remove anything!
Hi! I'm just curious to learn how your husband responded to Restore Gold.
Hi, well he is still taking that and the Hardy’s products (see my profile for the full list of what he is taking) and he is a different person. After only 3 days taking the Hardy’s den he become completely calm and has not depressed at all since. He has his energy back, is smiling and laughing and has barely stopped talking since, which a nice change from the last few years where he wanted to hide in the bedroom, not get up or go out. Maybe it is synergy between the products but the big change happened taking the Hardy’s. So I am not sure if the restore gold is helping or not. I could drop that out and see if he declines but at the moment I prefer to leave everything as it is and not do any more experiments while it is working!
His only problems now are his hands have still lost their dexterity and get tired quickly which was the first symptom that he went to the doctor over. He also still walks strangely with his arms out front but he doesn’t really have any other PD symptoms unless he really pushes himself physically or he is cross with one of our kids or nervous about something, then he develops a slight tremor.
Hi, another update.
At the end of May he suddenly went downhill again but I’m not sure why. He suddenly has no energy again and feels nauseous and fluey. He hasn’t become anxious again luckily. Possibilities are:
He stopped mannitol as he didn’t like the way it makes him need to urinate so often and he has had a few close calls while out nearly weeing himself.
He accidentally ate half my non gluten free toasted sandwich when he has been gluten free a year.
It’s winter. Less sun, darker, different food. He is always worse in winter.
He had a different probiotic than the usual one he has every second week.
He has been taking blackcurrant juice every morning and started a new bottle. Maybe it has different varieties or berries in it? ( it has a natural Maoi in it).
I has his blood tested for iron, b12/folate, vitamin d, b6 just in case any of these have built up too far being on Hardy’s den for months. They were all just above the high end of normal but not outrageously high.
Tried stopping blackcurrant since we have found it has an maoi in it. No improvements back on it.
Today 24/7/19 I have been reading up about coenzyme A ands it role in energy production from fatty acids. See my other post. I’m going to get some from vitacost and in the meantime have increased his b5 pantothenic acid which is one of the things that helps the body make coenzyme A, as there is only a small amount in the Hardy’s. Other components of coenzyme A are acetyl l carnitine and NAC which are both in Restore Gold and Hardy’s DEN!
If that doesn’t work I will try mannitol again in a week or so.
Update 7 August 2019
He is gradually improving again.
I have finally decided it is a seratonin/ dopamine imbalance. I think the reason he went down quickly is that may/ winter in NZ came. He tends to go into a sort of hibernation in winter. On Saturday’s though he watches our sons play foot ball and sometime stays out all day in the bright light. Then other days he will sleep in and not walk or go outside. I think he has a very sensitive circadian rhythm and such extremes of light throw it out of balance.
I have just been to a talk on sleep and found out that wearing sunglasses outside negates the benefits of the sunlight. He wears tinted glasses that go dark in bright light. Maybe in summer it’s bright enough but in winter with not so much sunshine perhaps he’s not getting enough light. Sitting in a bright room with sunshine is not enough apparently as the light level peters out at about 1m from the window. You need out side light.
Changes to regime:
He has his light box on a timer on the bed so he gets bright light at 7am to mimic summer.
We are walking an hour at 10am.
He will not wear his tinted glasses on walks from tomorrow
He has been taking his sertraline (SSRI) in the morning with the Sinemet but now we are cutting it in 4 and spreading it over the 3 meals and pre-bed. The rationale is morning light makes seratonin over the day so he needs the ssri later in the day to keep it in the system. Not sure if this is correct or not. Maybe it has just been interfering with the sinemet which frankly never seems to make any difference.
He is taking
Mirtazapine 3.75mg, sertraline 100mg, Sinemet 1 or 2 x 25/100 with uridine
Restore gold x16
Hardy’s DEN x12, Hardy’s greens and probiotics,
Digestive enzymes before meals
B5 in the hope it helps to make coenzyme A
Reduced glutathione on an empty stomach with a glass of water
Back on mannitol
Sipper bottle with 2g b1, d-ribose, mannitol, b2x 50mg, half a niagen capsule, inositol, with barkers blackcurrant juice (unsweetened)
, ubiquinol, pqq, fish oil,
Week about berberine/ allicin for roseacea
Sauerkraut, kimchi, kombucha, kefir yoghurt natural a few of these a day.
Diet no gluten or sugar, processed or deep fried food,
Oatmeal and blueberries for breakfast
Meat every 4 days, fish every 4 days, vegetarian in between days.
Nuts, seeds, beans, lentils, chickpeas.
Not much dairy or eggs. No seed oils.
Walk approx an hour in the mornings.
He has had an osteopath session to work on stiff neck and shoulders.
11/10/19; it’s now spring here after a not so good winter. He has been feeling sick and lacking energy all winter but has been coming right over the last few weeks. Not sure if it’s the light or supplements helping or the decreasing mirtazapine. Actual PD symptoms haven’t really changed since diagnosis apart from the initial improvement in facial expressions.
Now not taking blackcurrant juice. Using light box in the morning, no phosphotidylserine as it ran out.
He also still takes Hardy’s greens and probiotics, Restore Gold, fish oil, digestive enzymes before meals, ubiquinol, pqq.
&&& Just started Citicoline cdp jarrows on 28/5/19. Starting to slowly wean off mirtazapine and sertraline over months. ( now down to 2.5 mg mirtazipine from 30mg. Using a jewellers scale to reduce by about 1.5 % per week. Sertraline still on full amount 50mg as decreasing it by just a small amount made him feel worse).
11/1/19 now also taking celery seed extract (2 weeks) , niagen (6 weeks) astaxanthin on and off, shilajit(3 weeks), acetyl glutathione (5 weeks), l- carnosine (3 weeks), vinpocetine (1 week), and for roseacea lighthouse probiotics every second week, Allimed (garlic clinical strength) and berberine alternate weeks ( for a year) .
He feels better than he has all winter😀😀😀😅
Hi, LAJ12345! Is your husband still taking Restore Gold? Why or why not?
Yes he is! If you look at my profile I am trying to keep it up to date with everything he is on and my experiences and how he feels. As much as for my own records too. He is certainly so much better than he was last year but I don’t know how much of that is restore gold. It didn’t have a dramatic effect that I could say, wow that stuff is amazing! But it may be helping slowly improve him. The only things that I have noticed that have had a sudden and noticeable effect on him are hardys daily essential nutrients and horny goat weed (Icariin) but of course they may have worked symbiotically with any of the things he was already taking at the time.
He also exercises with a walk almost every day for an hour. Before he struggled to get out of bed and he was exhausted all the time and when he exercised he would have to sleep for hours. He was quite resistant to exercise previously as he didn’t have the energy. He has much more energy now.
Our diet is now very strict no sugar or oils other than olive and coconut oils, butter, ghee. No gluten, lots of greens every day, meat only every 4 days, 4 every 4 days, vegetarian every second day. Less dairy ( replaced milky coffee with soy milk), no processed food unless it doesn’t have any numbers in the ingredients. No mayonnaise’s just olive oil and vinegar, lots of nuts, beans, lentils. A few eggs, hardly any cheese. Yoghurt, kimchi, sauerkraut.
He lost nearly 20 kg over 6 months.
We now have a dog who makes him smile. His face works again! He volunteered at the bridge club doing directing and now they have made it a paid position so he now has a job 1 1/2 days a week. He doesn’t feel nauseous and like he is getting the flu every 23 days or so like he used to last year. He is interested in all his old hobbies again and last year he wasn’t interested and didn’t enjoy anything. Horny goat weed is helping motivation I’m sure, and also libido! His mood is stable, he isn’t anxious or depressed and he has cut his pharmaceutical antidepressants down to 1% of what he is prescribed and wants to get off them totally but we tried that a few Weeks ago and he felt worse after 2 days so maintaining a minuscule amount (I have had pills sent to a compounding pharmacy who has diluted them and repackaged them into capsules and I use a jewellers scale to weigh out amounts exactly.)
His Parkinson odour has been replaced by a normal man smell which is very nice😊. He can smell things now better than before but still not perfectly. He has had a fungal toenail which is extremely thick (nearly 5mm ) at the end for years and it appears it might be looking a bit better at the quick. He is going to get it removed by podiatrist and see if it grows back better. Usually it regrows the same if not worse.
His acne and rosacea are completely gone still and his skin is less oily. He has had acne and rosacea all his life that he remembers.
Problems he still has are his hands are still not dexterous so he struggles with things like doing dishes, doing up buttons etc, he is very stiff around the shoulders, he has urination urgency. He still gets a bit tired after an hours walk and needs to lie down for a bit. His gait is still the same with arms in front.
But overall he is much improved! The ultimate test will be winter and whether he will try and hibernate again. We are taking a week holiday in may in cairns Australia as it has longer light hours and hoping to stop the slide if it is going to occur,
Next steps are to work on dexterity which I am thinking may be more a physical thing than brain thing. I am trying to convince him to start qigong and finger exercises again but he is resistant to that idea still. I am worried about driving as he can not turn his head properly to check over his shoulder so maybe I can use that to convince him to try stretching again.
Today he is starting a collagen extract called vita raw collagen complex to see if it helps nails, joints, stiffness.
He takes 1/2 a C/L first thing an hour before breakfast and a mucuna capsule.
That's fantastic! Thanks for the detailed update!