Motivation - how do you get it?

[LAJ12345]

My husband has a severe motivation problem. I can now no longer get him to exercise and he has started refusing to get out of bed. He won’t shower and now he won’t change his clothes before bed meaning he will wear the same clothes for days on end. Even his undies. Ewwwwww!

Yesterday he wouldn’t even eat for most of the day. I only managed to get him to drink a glass and a half of water all day, but he did get up for dinner.

How can I get him moving? We did have a very good program of light exercises, qigong, finger exercises walking before the holiday season but severe anxiety leading to suicidal thoughts has meant a trip to the emergency mental health people so now he is on sertraline and mirtazapine which I think induce apathy.

Given I can’t even get him out of bed to shower or walk, and no amount of reasoning, cajoling, threatening is working I’m stuck. What can I do?

I am not sure if leaving him be to sleep it off until he decides to do something is the best. I have found in the past the more he sleeps the worse he gets. He is like a bear in hibernation.

I have tried reasoning with him. He knows exercise makes him feel better but he just says he can’t be bothered to do anything. It is not that any of his symptoms prevent him from doing anything. In fact he says the neuropathy in his hands is slightly better. He has no lack of physical ability except he is tired.

Today I tried a bit of threatening. If he doesn’t get up, change his clothes , have a shower I will have to employ a nurse to take over his hygiene care. This will cost $200 an hour. In the past the thought of spending money is enough to spring him into action as he doesn’t like spending. Today he doesn’t care. I said if I can’t look after you here you will have to go into a care facility which will cost $1000 per week. As he is only 58 he doesn’t get the pension or any government benefit so we would have to use up our savings to pay. He doesn’t care. This is a new level of apathy.

My 14 year old heard the conversation and is in tears. Am I being mean, insensitive. I don’t think he can carry on sleeping all day and never changing his clothes, or can he? Should I just leave him be and get on with everything- now I have to do everything he used to do as well as my normal tasks, plus look after my 14,16, 17 year old kids who still need attention, which he has been sucking up for the past months since diagnosis. I think they are feeling neglected.

Help!!!!

[MBAnderson]

My heart goes out to you. You're facing real challenges. I hope you will take care of yourself. (Put your oxygen mask on 1st.) I don't think you're prodding him as being mean. I don't know what else you could do. As a parent our children always come 1st, as it should be. You'll get helpful comments here.

[park_bear]

We are so much more at the mercy of our neurotransmitters then we would like to think. This is not laziness or some kind of character defect, so threatening him will not work. I suspect, as you do, the problem is due to the psych meds. If I understand your post correctly this problem started shortly after these meds were introduced. My suggestion would be to taper the psych meds.

[LAJ12345 in reply to park_bear]

Yes, he was on mirtazapine originally which he weaned off over months. He was going well until the holidays then the anxiety hit then of course the psych team remedicated him with the same stuff and more so no surprises he is back to square 1. Well even worse than that.

The psych team were not pleased he weaned off them in the first place so I feel I am to blame for that but it wasn’t helping him exercise and do things he needs to for the PD being on it. The apathy went away last time once he was off the mirtazapine so I am pretty sure it is the cause. The psychiatrist would be very cross if he started to wean off them again. It seems a choice between suicidal intents and apathy to the point of hibernation😪.

Well I returned from being out this morning to find him dressed and showered and playing bridge on the pc so the choice of showering and getting up today must have seemed more difficult than selling a rental property and going into care if he carries on like this for too much longer.

I agree it is not his normal personality and not his fault so it hurts me to have to be a bully and some days I just can’t do it so then he just sleeps all day.

[park_bear in reply to LAJ12345]

Is it possible to educate the psychiatrist as to what these meds are doing to him? It is like the old joke about the operation being a success but the patient died. It is not good enough to alleviate the anxiety if the result is the patient is confined to bed.

[LAJ12345 in reply to park_bear]

I have told the psychiatrist what mirtazapine did originally and why he weaned off and that he was was way better for a while until the holidays but professionals hate being questioned and he got pretty cross with me. I think the problem is to them success is the patient didn’t commit suicide on their watch but to me if that means they are so sedated they can’t exercise to the detriment of the PD and can’t interact with the family that is not success. Also being summer holidays here in NZ means the whole country shuts down so I think they all wanted to just sedate him to get him through the holiday while they were away then worry about it later. Meanwhile he gets hooked on the drugs again.

[park_bear in reply to LAJ12345]

So as I see it you have a choice of accepting one of three undesirable outcomes:

1. Psychiatrist cross at you

2. Being a bully to your husband

3. Husband spending most of his time in bed

The choice is yours. Personally I would choose number one, but that is just me.

[LAJ12345 in reply to park_bear]

Yes, I did that the first time he was on it and I am very tempted but the problem is the psychiatrist can section him under the mental health act if he thinks he is at serious risk (from me?) which might mean institutionalising him or removing him from my bad influence. Psychiatrist has already indicated that he thinks multivitamins and natural remedies are not effective and a bit of a waste of money so they would be unlikely to carry on administering these or make him exercise and he would probably end up sitting in a chair drugged to the eyeballs.

Also there is the serious risk that off the mirtazapine he will kill himself which I would then feel was my fault. He has got very close before to the point of getting all his passwords, keys papers etc out and leaving them on the bed before walking down to the high way down the road to jump under a truck, then changing his mind, then driving around one night after bridge looking for a lamppost he can drive into at high speed. Lucky I was up when he came home as he had already made a plan and had just returned to leave his house keys and swap to the older car and I managed to divert him and take his car keys away permanently. That was when I called in the mental health unit.

[park_bear in reply to LAJ12345]

Have you discussed with him why he wanted to commit suicide?

Pain will do that to a person.

As result of Qigong practice I spend much of my time in divine bliss - that helps tremendously.

Regarding the mirtazapine is any compromise possible - like a lower dosage?

[LAJ12345 in reply to park_bear]

It is because he can’t stand the anxiety, can’t see a way forward, or a future that is bearable he says. We were doing qigong every day until this latest episode but now on these drugs he won’t do it.

He has cut the mirtazapine in half 2 days ago on the ok from the psychiatrist who finally seemed to listen but the apathy hasn’t improved yet. I know it takes ages to work it’s way out of the system. The problem is the sertraline they put him on for depression makes him agitated and more suicidal and the psychiatrist doesn’t want to change too many things at once so won’t agree to decrease this. He wants him to double the sinemet which hasn’t so far made any difference to him and then add pramipexole which scares me as he has had compulsive behaviour like speeding, over eating and gambling before when they put him on fluoxetine and this seems to have the same effect on some people although the psych says it is a different pathway.

[Juliegrace in reply to LAJ12345]

Is the psychiatrist also treating his PD? A good neurologist should know that adding pramipexole to the regimen of someone who has already exhibited compulsive behaviors is not a good idea.

[LAJ12345 in reply to Juliegrace]

The psychiatrist isn’t familiar with Parkinson’s. He looked in his book from the pharma company and looked up webmed? which told him there wasn’t many side effects. He said the compulsive behaviour on the fluoxetine is on a different pathway than for the pramipexole as it is due to mania. So doesn’t necessarily mean he will get it for the pramipexole. Personally I wouldn’t want to chance it as he gets every rate side effect on almost every drug he ever takes. On fluoxetine he started speeding, buying lots of things, binge eating and gambling. All totally out of character.

[park_bear in reply to LAJ12345]

The psychiatrist is being naïvely taken in by big Pharma propaganda. I was taken in too by this Medscape article aimed at MDs. It completely ignores the orthostatic hypotension risk of dopamine agonists (pramipexole) and uses the now-debunked dyskinesia scare against levodopa. Worst of all, it falsely claims the risk of impulse control disorder is no different than levodopa:

medscape.com/viewarticle/43...

Propaganda: "It is not an overstatement to say that patients with Parkinson's symptoms will be less than optimally managed over the course of their illness if these agonists are not added to their regimen."

The adverse effects of dopamine agonists such as pramipexole are multiple and potentially dire. As such they should only be used when people with Parkinson's have maxed out on levodopa. Your husband has already demonstrated he is subject to impulse control disorder. The idea that pramipexole stimulates "a different pathway" than Prozac ignores the possibility that another pathway will also trigger this known vulnerability. In any case pramipexole is not an approved treatment for loss of motivation and it is inappropriate to prescribe it for that purpose.

Regarding the adverse effects of dopamine agonists - if you need medical journal references to show the psychiatrist let me know and I will provide them.

Piling on more drugs to cancel the adverse effects of other drugs is a downhill slope. It is evident that your husband needs an anti–anxiety medication, and that mirtazapine is not the right one. There are a ton of anti-anxiety meds out there. The psychiatrist needs to intelligently choose a different one rather than adding more meds, particularly one notorious for adverse effects.

Have you tried simple stimulants like coffee, tea or hot chocolate, to get him out of his funk?

[LAJ12345 in reply to park_bear]

Hi yes, I have been following this webpage since May and have tried nearly everything that anyone has suggested including most of the commonly taken supplements suggested and light box, exercises (walking, swimming) qigong, hand exercise, LSTV. Also our diet has changed to meat only every 5 days, fish every 5 days, vegan most of the rest of the time, no gluten or sugar so he has lost weight to a good weight now. Plus I have read probably 1-3 hours every day since then all the papers etc listed on here plus others when they went off in a tangent. It did all seem to be going well until the summer holiday period when the anxiety sent it on a downward spiral. The sad thing is if it wasn’t for the anxiety there is very little wrong with him and nothing much he couldn’t be doing physically although he gets fatigued very quickly. I think his physical symptoms have improved over the months with something, possibly the thiamine, or other supplements as his face is expressive again and just this week he said his hands weren’t as bad at bridge.

I agree about the piling on of drugs so I am very upset about all the ones he is taking now. He was not on any of the pharmaceuticals until recently. I reckoned right back in May that nearly all the symptoms he had seemed to be on the list of side effects of mirtazapine and when he had weaned off if the masked face and apathy went away, and he seemed less fatigued. Hard to tell though as he simultaneously started on thiamine, mannose and other vitamins so they could be the cause of the improvements.

He and I have both told the psychiatrist he does not want to be taking all these things and he has decided he won’t take the sinemet either as he can see no difference with or without it except for the bizarre shaking it causes when he first takes it. But the suicide risk is real and all the natural remedies have not been able to prevent the return of the anxiety with the holidays.

I have said to the psychiatrist I would like him to go off the sertraline as it has seemed to have had no effect in 8 weeks except to give him insomnia and restlessness, and to drop to the minimum of mirtazapine so now he is just taking 1/4 of a tab ie 7.5 mg. He has been told not to decrease the sertraline at the same time and to only change one thing at a time.

Mirtazapine doesn’t seem to stop the sudden specific anxiety attacks anyway as every Christmas he gets progressively worse even with the antidepressants he has been on over the past few years, none of them stop it. The only thing that has helped is clonazepam which they gave him initially this time to calm him down. They said take 2 3 times per day but he has found 1/4 of a tablet or 1/24 of the daily allowance can calm him. He desperately doesn’t want to take these as they are so addictive so has only taken about 6 in total of the hundreds they have prescribed over the period.

He has had a DNA analysis done which says he is a slow metaboliser of pharmaceuticals and pesticides , heavy metals etc so I think very small doses of things affect him. But the fact such a small dose of the clonazapam calms him makes me wonder if it is a placebo effect.

[park_bear in reply to LAJ12345]

By clonazepam addiction are you referring to the difficulty of stopping if one takes it regularly? Or is it something specific to him that has actually occurred? If this is the drug that works for him personally I would consider going with this and tapering off the others.

[LAJ12345 in reply to park_bear]

Just the general difficulty in stopping it. I think they say stops working after a while too so it is only a short term fix so they won’t prescribe them long term. Having said that we have a stock pile now as he is only taking a fraction of the amount they say so he could make them last ages. I have told the psychiatrist I think the best thing is to use these as emergency pills for sudden anxiety attacks, and wean off the others totally as they aren’t effective anyway in periods like holidays when it spirals downhill. Of course experts don’t like being given advice so he gets cross with me, and unfortunately he has the prescribing power😖 so I can’t annoy him too much. Oh how I wish we could all be allowed to buy whatever we want from the drug companies and do our own research as it is so frustrating to be so restricted by experts that trained maybe 20 years ago, have done less reading on PD than I have I am sure, and who get their advice from pharma manuals, and webMD which is only one of many places I read when I research something.

[park_bear in reply to LAJ12345]

To summarize, it works to take only the clonazepam when needed, and you have a stockpile that will last forever. Sounds like the answer to me. All that is left to do is to figure out what to say to the psychiatrist to keep him happy and wean your husband off these other meds. Or get a different psychiatrist if at all possible.

[LAJ12345 in reply to park_bear]

Yes I think this would be the best solution too so just have to convince the psych.

Trouble is this psychiatrist is free and available on an acute basis as he is part of the public hospital system here and if we go to another they have 2 month waiting lists and you have to pay. Then they might agree with the first guy.

Sorry I must seem like a pain as I always have a ‘but’ 😕

[park_bear in reply to LAJ12345]

No, you are not being a pain in all –you are are wrestling with a difficult problem.

The good news here is you do not need any prescriptions for a long time if you go with the clonazepam as needed recipe. As long as that continues to work you do not need any new prescriptions so there is no hurry to see an M.D.

Meanwhile if the cost is not prohibitive you can make an appointment to see a for pay psychiatrist or neurologist and see what they say.. By the time you see the new one hopefully the situation will be stabilized and you will simply need to maintain the new recipe

[LAJ12345 in reply to park_bear]

Ok, if the free guy doesn’t fall into line I will try and find someone new. Do psychiatrists typically know about PD? This one doesn’t although he is talking about putting him onto a psychotherapist (also free) if they can stabilise him and he apparently does have some experience with it. The difficulty with going to a new one is hubby is reluctant to spend any money as that is one of his irrational fears ie running out of money. Ironically the fastest way to chew through the money is if he has to go into care if he becomes too hard to cope with and won’t look after own hygiene. Any money spent to make him better is well worth it in my opinion but he has this I am not worth it because I am so useless attitude. (All self inflicted). And I am a bit worried a new one may just not want to step on the toes of the previous one so refuse to alter anything already in place.

Is there anyone out there in Christchurch nz who has a good team of specialists they can recommend?

[Motherfather in reply to LAJ12345]

hi laj how much sinemet does he take .

[LAJ12345 in reply to Motherfather]

He had just started on it at the same time as the sertraline. So it went 1 then 2 then 3 times a day x 100/25 over 3 weeks but he felt that it made no difference to anything, but made him feel very peculiar and shakey shortly after taking it. He then stopped it and it still made no difference. He doesn’t really have many Parkinson’s symptoms anyway except the depression and anxiety, and hands that don’t work well for long and a funny gait, but not the stooped shuffle. In the pull test he doesn’t really overbalance badly so it is hard to know what it should be helping.

[Motherfather in reply to LAJ12345]

hi laj well can you get him to change to madopar 200/50 1 three times a day people will say i should not be saying that well i dont really care as i know a lot more about pd than most doctors and know just about the same as some specialist i tried, if that dont help after a few weeks tell him to try 1 four times a day taking dopamine pills there are a few other pills he can try after awhile one is called amantadine..one is called doxylin 100 both the doctor can give you by prescription.both not very expensive.so ill leave it up to you laj on what you will do.hope this helps as i can understand were he is with the pain,,regards john.

[LAJ12345 in reply to Motherfather]

Do they help anxiety? I will look into whether we can get them here in NZ. Trouble is the neurologist who is the specialist here on PD is so busy he said he can only see us in 12 months, and psychiatrist and GP won’t interfere with the PD prescriptions as he is the expert supposedly. I think he has a nurse so I will approach her.

[Motherfather in reply to LAJ12345]

hi laj well im from aussie so you should have no problems getting them tell your doctor you would like to try madopar 200/50 1 four times a day thats the first step ill help you along the way if you need me to help you, he needs help badly tell your doctor you would like to try the madopar first then we can try the other 2 that i mention what you can do as well for the first week is give him half a tablet they can break into 4 pieces for that reason .im here every day to help you.regards john.

[LAJ12345 in reply to Motherfather]

Did you try sinemet first and did it not work? Is Madopar for anxiety? What is the advantage over sinemet?

[Motherfather in reply to LAJ12345]

well i tried sinemet i called an ambulance they came and i stayed 4 days in the hospital never again, i imagine theres a lot of people out there who can tell you about sinemet laj.both sinemet and madopar have one differents, in madopar it has benserazide, while sinemet has carbidopa both have levodopa.so the differents between the 2 is benserazide in madopar and carbidopa in sinemet.both theses tablets are for p,d.hope this helps..regards john.

[LAJ12345 in reply to Motherfather]

Gosh that sounds scary. His reaction wasn’t that bad but a bit scary with violent shaking. I think it might have been because he had it with breakfast which had milk and ground almond in his oatmeal. Either that or because he has his b vitamins at breakfast. Since then he has taken it between meals and it hasn’t done it again.

[Sarahjane1968 in reply to LAJ12345]

Hi,I was exactly the same as your husband, has he been checked for diabetes?, I am a single parent and because of my condition my son went into foster care , because he didn't have much of a life with me. I did have carer's, but he wanted me. He never spoke to me for 3 years. I was devastated, but the doctors took over a year to sort me out. I'm on the same tables as your husband, but I'm now on insulin so I'm awake. And my son is finally back in my life. So ask your doctor to check for diabetes. All the best hun. Xx

[LAJ12345 in reply to Sarahjane1968]

Thanks Sarah Jane, we have had a real breakthrough a few months ago and he now takes a nutrient supplement which has had miraculous results for him. I think they tested for diabetes when he first became ill, and his mum has it. I wouldn’t be surprised if he was pre diabetic before we made all our diet changes but he lost a lot of weight over the last year and has now stabilised mood. He takes only 1 Sinemet first thing in the morning about a half hour before breakfast and seems to have no effect from it, good or bad.

[Astra7]

How terrible. Sounds like depression which needs meds.

I think you need to tell him you are willing to help him if he needs you to help him get up, excercise, go to the Dr etc., and then you need to leave him to it. You already have 3 kids - you can’t handle another.

I think there is a kind of male helplessness that us women sort of support by trying to be kind and fix everyone. ( not meaning to be sexist so hope no one abuses me for that thought!).

Good luck.

[LAJ12345 in reply to Astra7]

Yes I know so I have been leaving him be for the last week but he only gets worse then as he can’t motivate himself to do anything at all except go to bridge where he can smile and chat and play and appear pretty normal until he comes home again worn out from the effort.

[Astra7 in reply to LAJ12345]

Bastard!!

[LAJ12345 in reply to Astra7]

Mmmm I put it down to the motivation required to do something enjoyable is lower so he can do it but anything which isn’t fun requires more motivation than he has. I don’t think it is his fault but it is hard to understand if you aren’t going through it I think. But it makes people think I am exaggerating when I say he won’t do anything then they see him at bridge.

[Hidden in reply to LAJ12345]

I think you are spot on with the motivation theory.

[NanCyclist]

When I was first diagnosed I felt the despair and anxiety common to PD patients. I don’t mean to sound self-centered but the thing that pulled me out of that state was learning that I could make choices. I was not just at the mercy of the doctors and/or drugs. I learned that by cycling at a high cadence I could dramatically mitigate my symptoms. I gained self-efficacy, some control over my life. I had gone from being a human to being a medical subset, not part of my plan for life. After a month I revisited my doctor and he told me that if he didn’t know i had. PD, he wouldn’t diagnose it. I wrote a book which many people have said has helped them. One man told me he was ready to commit suicide, but made another choice after reading it. “If I Can Climb Mt. Kilimanjaro, Why Can’t I Brush My Teeth”? Nan Little. This may be worth a try.

[LAJ12345 in reply to NanCyclist]

Thanks Nan, I will get hold of it and try and get him to read it.

Ps I’ve downloaded it from kindle as I can’t find anywhere to buy a copy in nz .

[DEAT]

LAJ12345

I think you are a saint. And those responding to offer advice are also.

I cant help thinking one of the biggest problems pwp face is that health professionals dont LISTEN.

Wishing you peace as you try to work thru this

difficult situation. Hang in there. You are amazing.

[LAJ12345 in reply to DEAT]

Thanks. I’m not feeling amazing, just feeling like a bully.😪

[rebtar]

I had depression and anxiety long before other physical PD symptoms, and have somewhat successfully used anti-depressants. I also used Ketamine assisted psychotherapy (very successful), and when I added Carbidopa/Levodopa to my regimen my depression and anxiety essentially went away. I have been suicidal, and meds saved my life.

It seems it would be important to distinguish between what may be an emotional reaction to having PD, and what may be perhaps a symptom of PD or continuation of an earlier depressive condition. If the reaction to having PD is a major contributor, psychotherapy can be very helpful. If he's been suicidal, however, I think meds are likely to be needed. However finding the right meds and the right dose can take time.

From what I understand, Mirtazapine is more sedating at lower doses, and more activating at higher doses. You could ask the Psy-doc about this. If this doc isn't willing to work with you to find a better solution, you could switch to another doc. But I would agree with the doc that if your husband has been suicidal, you shouldn't wean him off unless you're substituting something else.

Also you don't say how long he's been on the meds. It can take months for them to work optimally. So it may be a matter of time.

In the meantime, as others have said, take care of yourself. Best of luck.

[LAJ12345 in reply to rebtar]

Thanks. He was on mirtazapine for a couple of years the first time at 15 then 30 mg. This time he has been on 15 mg for 3 weeks with apathy starting almost immediately. He was taking the sertraline on its own for a few weeks when he first became suicidal again, but that just seemed to make him so agitated he couldn’t even sit still and he couldn’t sleep, hence the mirtazapine added back in to calm him. Prior to the mirtazapine he was on fluoxetine for a few years which also made him suicidal after a while.

He has had depression long before diagnosis in May last year so it is a symptom I think.

[PDGal4]

I feel for you, your husband, and your entire family. Is your husband undergoing any counseling? Seeing someone to help him find strategies to cope? I, like NanCyclist, felt overwhelmed, despairing and hopeless when I was diagnosed. I found a wonderful therapist who I still see who continues to help me tremendously. Might be helpful for your children and you as well.

[LAJ12345 in reply to PDGal4]

He has seen a counsellor a few times but he is a very technical type person, and also not very emotionally expressive ( probably the root of the problem) so it is hard to convince him that it is worth the money. He doesn’t believe it will work. At the moment his stress level is so high he cannot do anything at all so going somewhere to talk to someone - he would just refuse. He can’t even be got out of bed most of the time.

The psychiatrist at the hospital has said he is going to send him to a therapist but he has to get the anxiety under control first with medication so he is stable. I agree with you that it would be very helpful but it is breaking through that huge emotional defence system that he has built up over his lifetime and convincing him to change thinking patterns.

[alaynedellow]

I take mannitol- a natural plant sweetner used in diabetic products. It has lifted my apathy totally a year ago I thought that at least if I died I'd get it over with early. Now I glass half full again and notbeaten yet . I buy from syncolein.com direct. You cant even taste it- no harm in trying. Good luck and try to get yourself freetime time to let steam off.

[Stoxy in reply to alaynedellow]

How much do you take please? Thanks

[alaynedellow in reply to Stoxy]

1 tablespoon in coffee. See webpage

[Kattripp]

So sorry for what you are all going through!

It seems like he would be better off without the antidepressants!

You mentioned he was on Thiamine...what dose? The fact that he has a bizarre reaction when he takes c/l may indicate the dosage of Thiamine is too high.

We have noticed that HDT makes his C/L kick in really fast.

Have you contacted Dr Costantini?

Some PWP have good results with GABA

supplement due to its calming effect, but would need to discuss with (a new Dr?) first. I would not use a Dr not familiar with PD and med interactions!

Your pharmacist may also be helpful as can put his drugs into a Drug-Interaction

Checker (can also find several on-line.)

Good luck and don’t give up on him!

[boundless]

He sounds severely depressed. There are meds for depression that can help him, ask your doctor. Don't let this go on any longer without help.

[Hidden]

My PD husband (>60) also suffered more from anxiety and depression than tremors. He got mirtazapine to help with anxiety and sleep (which worked) and then got sertraline (along with counseling and cognitive behavioral therapy) He still has some anxiety, although not to the degree your husband has. And he is apathetic. In the US we can get health aides for $25-30/hour - I have that, mostly because he no longer can physically shower alone and it was getting too difficult for me to handle it. Perhaps it is his apathy, but he seems ok with having the aide tend to those needs, and the aide even gets him out walking for some exercise. Maybe it is just having someone other than his wife telling him what to do?

[LAJ12345 in reply to Hidden]

Yes you may be right! He has up to now done things if I insist so it is new for him to point blank refuse. Your husband sounds the same. Did the sertraline eventually work? It just made mine extremely agitated like a junky without a fix, suicidal, insomniac, and restless legs. He would sleep or sit down. Psychiatrist said double it and wait and gave him mirtazapine to offset it. How much of each does yours take?

[Hidden]

LAJ,

Here is a suggestion for you to consider. This is not a HDT related issue, but perhaps you can ask Dr. Costantini for his opinion on your situation with your husband. He has quite a bit of experience with multiple neurological disorders and consequently has seen his fair share of the associated depression, anxiety and apathy and just may potentially have a worthwhile suggestion or two. I would not normally suggest that someone contact him for things not directly related to PD and HDT, but the seriousness of your situation may require drastic measures that are out of the ordinary.

Dr. C. may not respond to a non HDT email or he may feel that a case like your husband can only be treated in his office with regular visits, but what if he suggests something that may be helpful for your husband? I know it is a long shot, but at this juncture in your and your husband's PD journey, it seems like an effort worth making. If Dr. C says he can't help, what has that cost you? If he can help, well, great! If you don't ask, he can't answer.

I hope he is able to offer you some suggestions based on his significant clinical experience and best wishes to the both of you going forward. Please keep us posted.

Art

[LAJ12345 in reply to Hidden]

Hi Art, if he would suggest something that would be great. There must be others in the same situation so it could be a helpful addition to the page. I have tried emailing Dr Constantini a few times. Once months ago I emailed about 3 times, then I tried again recently but apart from an initial acknowledgement that he had received the first email he has never replied again for some reason.

[Hidden in reply to LAJ12345]

The only two reasons that I have seen that he will not respond is either he was super busy and missed the email or the email had insufficient information for him to make informed suggestions. I have not seen him shy away from a patient because he thought their case was too difficult.

He and Dr Colangeli have both said to keep writing until he answers. You might try using the "contact form" that I posted as it will easily allow you to list many of your husbands major symptoms as well as write in specifics to your husband. That form is here :

healthunlocked.com/parkinso...

My thinking is that it can't hurt to try!

Art

[LAJ12345 in reply to Hidden]

Ok I will try the form. It is useful as it must make it easier for him to make sense of the emails especially with the language differences. The translations may not make much sense sometimes!

[Hikoi in reply to LAJ12345]

Hi LAJ12345

I think it can be quite confusing getting so many differing answers and deciding what to do. In CHristchuch you have a very activive PD organisation with a PD educator whose job it is to work alongside you both. She can usually get early appointments with the neuro etc if required. She will help you sort out your way. Have you tried that service?

ms-pd.org.nz

There is also a facebook site.

[LAJ12345 in reply to Hikoi]

Hi yes we have joined that and I have been to a couple of the support morning teas for spouses. They tend to be attended mainly by wives who are mostly 20 years or so older than me with husbands who are in their eighties so they are at different life stages than us. We are in our fifties with kids at home.

I have the feeling the nurse is so over stretched I don’t like to bother her. She said she has 600 patients and I imagine that many of them need her services more than us.

When we saw the neuro he said he would see us in 18 months as he is so busy. He wasn’t interested in trying any natural remedies, diet, exercise etc but just prescribed Sinemet and my husband didn’t want to start on that until necessary. I think his main interest is finding a method for identifying people early on so interventions can be started before the disease progresses far. I got the feeling he wasn’t interested in people who already had symptoms unless they had atypical PD, in fact he pretty much said that to us.

[Hikoi in reply to LAJ12345]

Hi LAJ

I certainly feel you and husband are just as worthy and worth help from the Parkinson educator but this is my opinion.

I don't expect your neuro has done alot of study on alternative therapies so he will avoid that but perhaps you have alternative therapists others have recommended in your area.

I guess your husband is not on any PD meds. Levadopa/carbidopa can help with non motor problems such as motivation by replacing some of the 60 % of dopamine we have lost.

Check out whether there is an Upbeat group in your area which is specifically for younger onset people. They have a national conference this year in Wangarei which Im sure you both would find very helpful. All the best.

[LAJ12345 in reply to Hikoi]

Ok thanks I will look that up. Hubby has tried mucuna, then about a month ago he started on sinemet but he thinks it makes no difference to any symptoms. I am not sure. I think the days he takes it maybe he seems more motivated but he can feel no difference. Sometimes I think he doesnt himself know or remember how he has been on other days so he feels he is always the same and nothing works but I can definitely see diffferences on different days but it is hard to figure out which factors cause the differences. At the moment he is supposed to be taking 3 tabs a day but sometimes he takes 3, mostly he takes 2 or 1. He doesn’t like the funny judderry feeling it gives him immediately after so tenses to avoid it.

[Hikoi in reply to LAJ12345]

I find it hard to know which causes what too and often partners have a better grasp of what is happening. Personally I think he needs to commit to an extended time of sinemet 3day, say 6-12 weeks then it will be clearer (hopefully). The first year is often the worst getting sorted and coming to terms with the condition. After that things begin to be easier I found.

You are welcome to private message me anytime.

[LAJ12345 in reply to Hikoi]

Is upbeat just the outward bound experience or is there a regular local event? He knows about the outward bound course but at the moment there is no way he would agree to it. I can’t even get him to do simple things like go out for dinner, go to the beach or swimming in our own pool, or go to a the movies. He has at least accompanied me for a walk around the block the last 3days which is progress!

[Hikoi in reply to LAJ12345]

Outward Bound is for upbeat members and Is Free! Work on him, he has until 65 to do it. Upbeat meetings are separate from outward bound. It would be a good way to get involved with your educator, contact her to ask about what happens in your area. She could also link you up with another younger onset family and explain all the exercise classes available