Is this progression normal: My husband... - Cure Parkinson's

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Is this progression normal

Abinat58
Abinat58

My husband, diagnosed 2015, is really struggling. He feels rough all the time. Main symptoms are shuffling, stoop (causing back ache), balance, slowness and lack of energy so exercise is very limited. On Sinemet 3 hourly, Rasagiline 1mg and Madopar 62.5 daily + Neupro patch 4mg. Nothing new seems to have any effect after a couple of days. Additionally he’s been on HDT 1g daily for a year or so and I’ve just bought a Wellred coronet to see if that can help. We take a variety of supplements but I’m at my wits end looking for something to make him feel better. I feel helpless! The doctor is supportive, but not seeing him again for another six months. Is this normal for just five years in?

45 Replies

I was diagnosed 5 years ago and doing give up until a few months ago. Seems like the ‘honeymoon’ theory may be right😟

RoyProp
RoyProp in reply to Astra7

Diagnosed 2012

My regimen:

The positives after B1: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression slowed. Suppressed most motor and non-motor symptoms...

My 9th year post diagnosis and have not fallen, not once, to the surprise of my neuro.

Smaller doses more frequent. Keep the dopamine at even, consistent level without extreme highs. In my nine years since diagnosis, no dyskinesia, no falls. Current (Nov. 2020) Push Pull Test only one step recovery. See video of this test under Announcements. Click See All. FaceBook group, Parkinson's thiamine hcl

2 x day (6 a.m. 2g, and at fourth hour 2g) vitamin B1 (as thiamine HCL) 500mg easy swallow capsules.

Pramipexole 0.05mg, once nightly. Caused edema. Not recommended.

B1 Thiamine therapy reference / slow progression, suppress motor and non-motor symptoms:

(Thiamine HCL is oral substitute to injecting B1) 2 x day (morning 2g and at lunch 2g)

Doctor Costantini strategy that I find helpful "thiamine 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”.

@abinat58, please be more specific and someone in this forum might have some experiences to share. Welcome to the forum BTW, and I wish you and your husband and family the best that this world has to offer from here on out.

By specific, I mean, your husband's age, country that you are living in and things like diet patterns. Please indicate the exact Sinemet dosage. We are all laypeople here, but between us all we are able to give you lay advice which may help you with the right call to make. I hope that you are engaging with an MDS if you are in the USA or an equivalent Specialist if you are not. I am guessing not because we are able to see our doctors pretty much at will here in the USA provided that we have an established relationship and the money or insurance to pay.

My 2 cents, I have been more miserable when my medications are too much rather than too little. What i see as a layperson is that your husband appears to be on too much medication. Seems like how I feel when I have severe dyskynesias.

RKM

Abinat58
Abinat58 in reply to pdpatient

Husband is 64, diagnosed at 58 after back injury. We live in the UK and his diet is not restricted. He's never been the same after his neuro told him to stop taking Ropinerole (8mg cold turkey) and start on Sinemet (tiny amount and titrate up slowly). He quickly went into withdrawal, caused dreadful insomnia and then depression ending up in hospital after collapsing. Takes Mirtazapine for anxiety. Changed neuro, but medication seems to increase at every visit. I did wonder whether he was over medicated. However, due to the problems of reducing medication in the past, I worry. He sleeps a lot in the daytime and, although he has vivid dreams, sleeps well at night. Does not have tremor though sometimes jerks. His medication regime:

8am Sinemet Plus 25/100, Rasagiline 1mg, Dispersible Madopar 50/12.5

11am, 2pm, 5pm, 8pm Sinemet Plus 25/100

10pm Mirtazapine 30mg

Bedtime 2 x Half Sinemet CR 25/100, Neupro patch 4mg

Now that I've written that down, it does sound a lot!

Continuing with HDT at 1g per day as I think it helps with constipation though I'm not sure it's enough to help with other symptoms.

Too early to tell if the Wellred coronet is doing anything.

As for a Movement Disorder Specialist, is that different to a neurologist?

park_bear
park_bear in reply to Abinat58

I am six years in and doing adequately - I require a total of about 300 milligrams of levodopa daily. Additional interventions to look into:

1. Exercise program. Daily vigorous exercise as much as he can.

2. Cinnamon - see my report here: healthunlocked.com/cure-par...

3. Mannitol: clinicrowd.info/parkinsons-...

4. Qigong. It takes a lot of dedication and is not for everybody. My experience here: healthunlocked.com/cure-par...

A movement disorder specialist is a special kind of neurologist. Your husband appears to be well medicated so I do not see how that will make any difference.

pdpatient
pdpatient in reply to Abinat58

@abinat58, I don't have much to add to my good friend, @park_bear 's response, but I believe there is a great Parkinson's specialist in proper London that a few of the forum members absolutely love. Maybe, they can direct you more. I am sure that someone will respond with more information.

Diet wise, you will need to make many adjustments in terms of timing, quantity and composition. Protein interferes with levodopa absorption and so, you will need to structure it properly. Please use the search box to get already posted information on the forum regarding any of this.

As for the medications, I personally think that it is too much but please take the information that you just gave us in such great detail to your new doctor. In my experience, doctors seldom read the medicine list carefully and you will be well advised to ask questions. Plenty of questions.

As a side bar, I will say that my only one experience with a British doctor in Hong Kong a couple of years ago was terrible and if my experience is typical, then I would say that they brook no questions and are incredibly arrogant He had the attitude of " I know better and I am better than you, so keep your questions to yourself ". No American that I know would ever tolerate that kind of behavior. I sincerely hope that this is not typical in proper Britain you are allowed to ask plenty of questions.

Good luck and God speed.

RKM

Jmwg45
Jmwg45 in reply to pdpatient

I would love details of the Proper London PD specialist.

My neuro sees me once a year and pretty much only cares if I'm pooing regularly.

In the meantime I am 49, 6 years in, still working through necessity, on approx 700mg Levo/day, too low to combat bradykenesia, rigidity, pain or freezing as much as I need but causing dyskineskia, and dystonia in neck that's frequently agonising.

I say approx 700mg as I have to basically guess how big a dose I can handle each time that won't leave me too dyskinesic or dystonic while being high enough to be at least basically functional based on the previous dose.

Take melatonin, mannitol, 2g b1, b complex, c, d, NAC, and zinc also.

Seamus6
Seamus6 in reply to Abinat58

In common with other responses, that does seem quite a lot of meds and variety.I would be looking to simplify the regime and maybe focus on the C/L. If you're in the UK you should have access to a Parkinson's nurse to advise/prescribe.

Building a knowledge of the meds and questioning everything is vital.

P.s. I'm staggered to hear a neurologist advising stopping a Dopamine Agonist cold turkey!

pdpatient
pdpatient in reply to Seamus6

@seamus6, well put. The part about stopping anything cold turkey should give the patient, pause. Weaning a patient away from a medication could even be extremely dangerous in some situations such as any form of Levodopa. In that case, it can even result in death.

Skydome
Skydome in reply to Abinat58

You need to streamline your husband’s medication regime under the supervision of a good neurologist. Neupro patch is a dopamine agonist so he is still on it. I would go with either Sinemet or Madopar, not both. Actually his 1 x Sinemet 25/100mg every 3 hours is not a high dose for someone 6 years in. It’s the messy mix of everything that makes him feel so unwell. I have noticed that this problem is particularly common among UK PWP.

Astra7
Astra7 in reply to Abinat58

I take 600mg madapor a day after 5 years. Seems a fairly common dose.

Also azilect and pramipexole to help get as much out of the madopar as possible.

Perhaps his regime could be simplified.

LAJ12345
LAJ12345 in reply to Abinat58

My husband got really bad on mirtazapine in fact most of his symptoms were caused by it in my opinion.

I have weaned him off it but it must be done incredibly slowly over a couple of years.especially the last mg. I cut and weighed it decreasing by about 10% every few weeks ie - 10% the fist week, then 10% off the remainder several weeks later, and so on down to the last 3 mg. Then I had it compounded and diluted by amout1/20 by a compounding pharmacy and then continued decreasing that until now I have got him down to the last of that.

My husband is very easily over medicated. He has most side effects of most drugs at the recommended dosages but I find a much lower dose of most things is better for him. If you decrease things cut it down very slowly as you might make it worse if you go too quickly.

Try swapping in melatonin at night if you cut back the mirtazapine. Sinemet and madopar made him extremely anxious . The apolloneuro device seems to help with that and he has sublingual gaba as well if he gets anxious. Also he is taking 1/4 of a tablet of procyclidine morning and night and I think that is helping him stay calmer. Is your husband very anxious? Does he complain of feeling fluey all the time? Mine did but seems a bit better over the last few months. I think that was due to some kind of gut infection or fungus. He had rosacea and acne as long as I’ve known him but we have finally got rid of that using berberine and allimed for about a year week about with probiotics and gluten and sugar free diet so I wouldn’t be surprised if that was causing the fluey feeling.

Mjm012649
Mjm012649 in reply to pdpatient

Although I realize all PD patients respond differently to meds and also that progression is different for everyone, I agree with you completely that less is more in my husband’s case also, He was diagnosed in 2015. We tried everything that was recommended, including the high dose Thiamine regime. I was desperate to make it better for him. And then ... we both took a deep breath and slowly came off the many meds and supplements that filled the cabinet. Since then, he has found that a more simple regimen works for him. Additionally, he works with him one day a week, and a private trainer works on strengthening, which helps him with endurance. He is moving more, not just sitting. I think that in itself has helped him and his attitude as well. Here is what he takes now:Two 25/100 carbidopa-levodopa 4 x daily.

One daily multi vitamin

One probiotic

Bedtime: 150mg Trazadone and 10 mg melatonin (sleep is a big thing for him).

He also takes one capful of Miralax every morning, which has resolved constipation issue.

I would say that we both have, over the last six years, come to grips with our situation and kind of tried to stop giving all our energy and attention to PD. It was an exhausting and emotionally draining way of living our life. That’s where we are now. Hope the thoughts and ideas of others on the forum gives some peace. Best wishes😘

Abinat58
Abinat58 in reply to Mjm012649

Our husbands sound very similar. I think I will try to very gradually bring him off some of the medication. He's seen any difference being on Rasagiline. The Neupro patch irritates his skin and he's seen no effect from that either. I will leave him with the Mirtazapine for the time being as it helps him get to sleep at night and is good for his anxiety. I suppose I ought to speak with the neuro, although he seemed happy for us to adjust meds as required when we last met. Thank you. You've given us courage to experiment and shown us there is hope. 😘

Despe
Despe in reply to pdpatient

I did not know that "country that you are living" has something to do with progression or no progression!

pdpatient
pdpatient in reply to Despe

@despe, thank you for pointing out a couple of statements that could be misinterpreted as being rude or crass. I am in no way disparaging any other country, and if it came across as such to anyone, I apologize.

I suggested that country be given in order to enable us to provide accurate information and experiences. No point in telling someone to take a cue from one's Parkinson's journey, if the resources, medical systems, standard of care and other paraphernalia are not similar.

For example, although the UK has social medicine, it is not company to the same in Canada at least as far as I know. I had a brief exchange with another forum member from Canada and we compared notes. Just wanted to assure you that there was no malice or ignorance of sensitivities. You are correct that the progression of my disease knows no geographical boundaries.

That brings us to your second comment about being able to see a doctor at will in the USA. I thought that I had prefaced it with a caveat of "provided you have the established patient relationship and money or the right insurance ". I have private United Healthcare paid by my employer and myself and I have no limits on the number of office visits. Yes, there is a cap on physical therapy visits or psych counseling, but pretty much there's no cap thanks to evergreen President Obama 😂 BTW, my MDS has seen me 12 times so far via Telehealth, thanks to "my favorite President Trump". 😢😊

Medicare might have different rules and no two insurances are the same. For example, United Healthcare through my current employer does not cover Rytary, so I have to pay out of pocket. BTW Rytary is a great example of why country matters. Again, as far as I know, Rytary is not available in the UK or maybe even Continental Europe.

Now before you start telling me that UK is in Europe, I know that it is in Europe, but just not part of the European mainland. 😂😭✈️.

So, essentially, country does matter after all.

RKM

Despe
Despe in reply to pdpatient

Thank you for your reply. If you can see your MDS at will, then I have to admit you are a heck of a lucky individual. Again, it depends on what institution your MDS is part of. Our MDS is a Vanderbilt asst professor, and we can only see him once or twice a year, based on PD stage. With COVID19, Vanderbilt gave us a Webcam appointment, more than a year after my husband's last appointment. We refused this Webcam appointment and we asked for a personal visit. The earliest they could give us was in October of this year. I had to call over and over, explaining that it was more than a year since he was last seen by his MDS. Finally, they changed it to June.

We have a good insurance, too, (Federal BC/BS), and there was never a problem with physicians' visits or referrals--never needed a referral from our FP, we could make an appointment with any specialist.

Despe
Despe in reply to pdpatient

". . . we are able to see our doctors pretty much at will here in the USA. . ."

Very inaccurate! Maybe every 6 months earliest appointments, best bet yearly.

• High-dose thiamine, courtesy of Dr. Antonio Costantini:

"Parkinson's disease"

Vitamin B1 use instructions :

Join my Facebook group Parkinson’s thiamine hcl

m.facebook.com/groups/23226...

kevowpd
kevowpd in reply to RoyProp

She mentions that he is using B1, Roy.

pdpatient
pdpatient in reply to kevowpd

LoL, @kevowpd, I am ROTFL 😂😅😭🙃. I know, right?

@royprop and @john_pepper have standard templates that they offer to every unsuspecting Parkinson's rookie that joins this forum 😩👏.

OMG, I can't stop laughing.

RKM

Despe
Despe in reply to pdpatient

Now, you are rude and discouraging, AGAIN!

kevowpd
kevowpd in reply to Despe

It was an amusing (and accurate) observstion. Lighten up a bit.

pdpatient
pdpatient in reply to Despe

@despe, we need to laugh once in a while. I have to disagree on this one. It has to be quite apparent that I was joking.

Now, you have made me laugh again. I will try not to roll 😂🤣😅😁

I hope that you can agree that it is better than being sullen, sad and a bore to be around. 😴😩😪🙃

Lighten up. Life has been quite tough lately, so we have to keep as sane as we can as long as we can. One way is through humor. Parkinson's is a long and excruciating journey. I should know after nearly 10 years.

RKM

There is no “normal” with PD. What kind of exercise program is he on? Try minimizing meds and exercising as much as possible. Start with whatever he can do. Alternate HIIT with mind/body training like Qi Gong. My daily goal these days is 2 hours of physical training. “Honeymoon” theories are a defeatist mental attitude. Don’t buy into it. Diet and good quality sleep are also very important. Keep the faith and keep trying.

gginto
gginto in reply to reedboat2

Absolutely- Don't buy into this "Honeymoon" theory.. If one is exercising as much as they physically can, meditating, eating a good diet, sleeping reg....etc these, I truly believe can really help against symptoms. Agreed everyone has a different response, and symptoms vary but not moving, I believe is the worst thing one can do- As long as you can move, you can exercise ...

Abinat58
Abinat58 in reply to reedboat2

Thank you. Getting him to exercise is going to be tough though.

The walking problem is easily solved by learning t use his conscious brain to control his movements. I am happy to let you have all the information on how to go about doing this. Just let me have your email address and I will send it all to you, at no cost,

Hi. I'm 5 plus years in. I take. MaadoparCR 125 twice a day. Azilect, mannitol, B1-100 mgg daily. You can overdose with B1 and it makes symptoms worse. Main way i can tell is that i feel 'jittery' inside. I hadperiod wen couldnt wak more than 3 steps then stop but jittery lets me know when od. I rest from B1 on weekends so i dont get build up.

In protocol it says sstopping n restarting is ok.

Good luck

My husband was diagnosed in2012/13. It's been a Rollercoaster ride. The Neupro patch was very successful early on (8mg) for his apathy, which was very severe. It stopped working in 2019. After research on this site, and checking the research with our pharmacist, we tried mannitol. It's been a life changer. See my post.

The mannitol seems to have stopped the progression of the disease, but over the past few weeks I wondered if he was starting to regress slightly. Anyway, Im not waiting. This week we started on the Red Light coronet.

Thank you everyone for responding. It’s been quite overwhelming and I don’t know where to start. He’s having a bad day today and I’m grateful if your support as my helplessness is affecting my mental health.

I m so sorry your husband is not feeling good it’s such a difficult one! Neurologist appointments seem to take ages to get and then if meds are changed they take getting used too. I am very disheartened to hear your husband had to go cold turkey on a dopamine agonist seems to go against all the rules.The problem is also that PD sufferers are all different and we all rely on the experts. My husband had issues with a Neuro he had for 4 years. We changed him via our GP to a hospital that specialises in Neurological diseases, and a much more amenable Neurologist. We haven’t seen him a great deal face to face but he called my husband during lockdown and spent an hour on the phone. He is much more helpful and was quite happy for my husband to take supplements and did advise vitamin D.

My husband has also been diagnosed for 6 years now and along with Park Bear s advice on helpful additional interventions my husband includes these:

A variety of vitamins and minerals as suggested on this site, including B1.

Has Ceylon cinnamon daily as he likes the flavour.

Sticks to a healthy diet with lots of fruits and vegetables.

Wears his Red light hat( I see you’ve got the coronet)

Find a form of exercise he can stick to and enjoy.

Keeps socialising with friends.

Revitalised interests he used to love doing

Broccoli tea/sprouts/brocomax

Organic Inulin which helps with constipation and is a prebiotic.( research about it

Not everything helps everybody but it’s worth a try. There are lots of knowledgeable people on this website who have tried additional interventions and found them helpful.

I hope your husband can find something that can help him to feel a bit better.

Abinat58
Abinat58 in reply to Zella23

Thank you so much. We're willing to try anything. Just want him to feel better.

Zella23
Zella23 in reply to Abinat58

Absolutely. When trying anything new, only introduce one thing at a time or you’ll never know what helps. All the best let’s hope something might help.

I feel for you Abi. My husband also deteriorated rapidly, and he was diagnosed in 2018. He has all the symptoms your husband has and more. We tried the coronet and it made him feel worse. We recently started on the B1. He has been on mannitol since October. Because of his cognitive issues (not dementia), he is not a candidate for DBS. Our only hope at present is the duopa. We too, have tried all the supplements. He also takes sinemet, comtan, and the neupro patch. Exercise is iffy, since he feels so badly most of the time. I wish I could be of more help. Take care of yourself.

Abinat58
Abinat58 in reply to Pegcity

Yes, exercise is impossible when he doesn't feel well enough. Just knowing someone else is in the same position as me helps a little. Thank you.

You mention a lot of meds, but nothing about diet. I'm 72 and five years in to PD. Three years ago I went gluten-free, lactose-free, sugar-free, alcohol-free. I recently eliminated everything tomato-based because I felt sick after eating. I feel so much better on a restricted diet and am on very limited meds. As others have mentioned, I do B1, manitol, and cinnamon. Diet restrictions might be worth considering.

Go to YouTube and search Sara King interview with Colin Potter - you might find some inspiration. I would be interested to hear back from you with regards to the Wellred Coronet. Check out John Pepper's Conscious Walking technique.

My MDS which I see every 5-6 months is always available by email. If I feel that a drug or dosage is not working, she gets back to me quite promptly. If I feel critical then I use my cell and very happy with response time. I am 73 in Medicare with supplemental insurance.

I keep my meds very simple and take nothing but 3 grams B1 and Rytary (time released L/C). Occasionally I will try something new for a few months but so far I have found nothing that obviously helps. My main focus is exercise. I have found that walking 1-2 miles a day when I can is best for me. I've been walking like this for 5 years now. I walk as fast as I can and try to get in at least 20 minutes a day on average. Qigong is also very helpful.When I started I could barely move. I began with stretching exercises everyday, and added a little bit every day until I was walking again.

I also changed my diet and and am now whole plant which for me means no animal or highly processed products. This might seem too restrictive for some people but it has helped me a lot by giving me extra energy. Also with the high fiber diet constipation is a thing of the past.

I was diagnosed 12 years ago and 5 years ago I took a very bad turn for the worse. I won't go into the symptoms I was experiencing back then, but they were severe. For example I was lunging from one thing to another just to be able to walk across the room and falling down was daily if not hourly occurrence.

Today I am not symptom free but close enough that I don't dread each day.

Abinat58
Abinat58 in reply to JAS9

I think we both dread the day ahead. The only time he feels ok is late afternoon for about an hour (and when he’s asleep). He likes food so restricting it would be harsh when it’s just about the only thing pleasurable to him.

See Roy’s reply...,this is me too. 9 yrs dx and on B1 protocol for 3. Brilliant

I am on 8/500 mg/day HDT (HCL) and it took that to remove all the symptoms except right hand tremor. I had 9 markers for the disease. All that you mention and more. My sweet spot is 4 grams orally each day with breaks periodically. Took about 6-9 weeks to work for me.

Abinat58
Abinat58 in reply to st8farm

I started him on 4 grams a year ago but didn’t see any benefit, except reduced constipation. Then he went downhill so I reduced it and he’s now on just 1 gram. It’s very difficult to get the dosage right for each individual and takes a while to see what works.

st8farm
st8farm in reply to Abinat58

I only proffer my situation in hopes of sharing with people that 4 grams is not extreme and I hear so many times that people feel anything over 2 grams. is extreme and therefore don't explore the potential benefit s. I wish you both the best of outcomes. I am diagnosed around 5 years ago.

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