Hubby’s arms and hands are becoming w... - Parkinson's Movement

Parkinson's Movement

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Hubby’s arms and hands are becoming worse

LAJ12345
LAJ12345

His first symptom was hands that don’t work very well. Now he is struggling to hold or rearrange his cards playing bridge , cut his food, wash himself. Levodopa drugs don’t seem to help. He has tried various doses but either it doesn’t work at all or he is unable to reach a therapeutic dose without him become so agitated he can’t tolerate it. He shoulders are very stiff.

We have had some success reducing anxiety recently with a hemp oil recommended to us but last night he was beside himself and wants to die as bridge is his only social outing, friend group and interest and he can’t endure life with nothing to do.

What do people use for very stiff shoulders and arm and loss of dexterity?

114 Replies
oldestnewest

Have you discussed surgery (DBS) with your Neuro?

LAJ12345
LAJ12345 in reply to ChrisWF

We can’t even get to see a neuro at the moment or any specialist. He’s on a waiting list. I’m not sure if dbs is available in NZ and he has said he would not do it even if it was available.

LAJ12345
LAJ12345 in reply to ChrisWF

PS I just looked it up and it seems they do 20 people a year here but not if you have had major depression which he has.

Hikoi
Hikoi in reply to ChrisWF

He was diagnosed 2018. Unlikely to consider it this early thought they might.

LAJ12345
LAJ12345 in reply to Hikoi

Yes, and there is no way he would do it anyway. It’s hard enough to get him to agree to even go to the gp and he won’t even try physio or massage etc. his first answer to anything is no. Without even considering or thinking.

Godiv
Godiv in reply to LAJ12345

Darn, I was going to ask you if he would do physical therapy for his hands and stuff shoulders. It’s not a cure but he might be amazed by how much it would help. It’s very difficult though when people help themselves, although I know he feels miserable and if he has anxiety it’s very hard to get out to physical therapy appointments or massage appointments.

Sorry to hear this. Is he still taking B1? Can he try just Sinemet at night and let it wear off in the morning so he has none through the day? ( there is still a residual amount in the system) This works for my husband with the help of B1.

LAJ12345
LAJ12345 in reply to nellie58

Yes is it taking b1. He is taking madopar62.5 but thinks it has no effect on his arms. He takes 3 per day, tried 4 but it made him very agitated.

chartist
chartist in reply to LAJ12345

Since he is taking B1, have you tried temporarily stopping his dose for a week or so to let his levels return to native levels to see if he improves? I believe he has been taking his dose long enough to fall into that category where his dose might be a bit too high now and causing a worsening of symptoms. This effect generally occurs at 6 to 18 months into HDT and it appears it can happen more than once. A dose that is now slightly too high, can cause a worsening of symptoms and can even cause new symptoms that have never been seen before.

healthunlocked.com/parkinso...

Art

LAJ12345
LAJ12345 in reply to chartist

Yes I did this first. Then I tried increasing it. And then I also took him off all supplements later just in case they were interacting. It made him worse, e verything I tried so now he is back on them all at the original amounts.

Definitely the removal of the B1 made him much worse.

I do feel for your husband especially feeling so bad so early in the illness. You dont say if he is on any medicine at present? Does he have a tremor or more stiffness dominant.?

LAJ12345
LAJ12345 in reply to Hikoi

He does have a tremor now but his worst thing has always been the stiff shoulders and lack of dexterity with his hands.

He is taking madopar62.5 but thinks it has no effect on his arms. He takes 3 per day, tried 4 but it made him very agitated. He is on a tiny amount of mirtazapine for sleep 1mg. And about 1/6 of a sertaline tablet. And higher amounts of these make him agitated and compulsive but he can’t get off the the remnants of these as he has severe withdrawal side effects.

I feel like the stiff shoulders And loss of strength are a physical muscle wasting problem from refusing to use his hands except to sit and play bridge on the pc. This morning I have managed to convince him to try the hand and LSVT exercises and qigong again but he is very reluctant to do anything to help himself.

Hikoi
Hikoi in reply to LAJ12345

Parkinsons is a muscle codition. Without dopamine his muscles cannot work well and will be stiff. He is on a tiny dose of ldopa a day.

LAJ12345
LAJ12345 in reply to Hikoi

Yes but unfortunately any more he gets extremely agitated and distressed and starts having sort of spasms.

Godiv
Godiv in reply to LAJ12345

It’s really difficult if you can’t get to a Neuro. I wondered if just some thing like Xanax would just help him get through the anxiety enough to do a little bit more. I know drugs like Xanax Aren’t desirable for long-term usage, but maybe something to just get him through the bad spot and get him out of the house?

LAJ12345
LAJ12345 in reply to Godiv

He does have clonazapam as an emergency pill and even1/4 of one of the helps a bit but he’s reluctant to start taking those in large amounts. We have found the hemp oil now which is cbd and thc free and it seems to help but it doesn’t stop the side effects of the drugs

Godiv
Godiv in reply to LAJ12345

Darn :(.

Has he been checked for heavy metals, and also for toxins like mold/mycotoxins, and glyphosate? My husband just got back results and he is in 90th percentile for glyphosate toxicity.

LAJ12345
LAJ12345 in reply to Redginger

We had lots of testing done 2 years ago but I have just had mycotoxin testing done and have appointment with dr this afternoon to discuss results so it will be interesting

Redginger
Redginger in reply to LAJ12345

Would like to know what you find out from those tests. Some mycotoxins, ochratoxin, for instance, are tremorgenic. We also have testing results showing mold/mycotoxins toxicity for my husband. Blessings to you both.

LAJ12345
LAJ12345 in reply to Redginger

Will let you know results from today. Can’t wait!

LAJ12345
LAJ12345 in reply to Redginger

His results have come back extremely high for ochratoxin and gliotoxin and low for the others. Now to find where it comes from . She is suggesting I get tested too to see if it is in food or our environment.

Elizadoo
Elizadoo in reply to LAJ12345

I just looked up the medical reports and research on these 2 toxins you named, and there appears to be a definite link re: your husband's behavior. I would pursue this path--especially since you haven't tried this yet.

LAJ12345
LAJ12345 in reply to Elizadoo

Yes, it does sound likely doesn’t it. I am not sure if it is in our house or food. I’m going to get tested too . It’s possible it is from an old exposure but we have been together 20 years so unless it’s been in him all that time I need to find the source as we have kids here too.

LAJ12345
LAJ12345 in reply to Redginger

Here are the results

healthunlocked.com/parkinso...

There are videos around showing stretches for upper arms and neck that might help. Also massage is good.

LAJ12345
LAJ12345 in reply to Astra7

Thanks, yes he was doing a line up of LSVT, fingers and qigong when he was feeling good then just stopped and refused to do them. Massage he likes if I do it but won’t go to a professional. I do feel it is physical rather than chemical but might be wrong. The problem is convincing him to do anything to help himself.

Despe
Despe in reply to LAJ12345

"The problem is convincing him to do anything to help himself. "

Could your husband and mine be twin brothers? :) I am going through the same problem: Any help provided to him is welcome but I can't convince him to do any exercises to correct his posture. However, we do go for long walks and if weather not permitting, he uses the treadmill.

LAJ12345
LAJ12345 in reply to Despe

Yes it does 🤣. I had a bit of success yesterday. He agreed to do a finger exercise. He will walk though but that is because his legs work . His hands require effort and he doesn’t enjoy anything enough to be bothered with them.

I wonder if this is something from birth as he has always been awkward with hand things. He has held a pencil oddly from a child, couldn’t do art, wouldn’t try anything crafty. I think his hands have never been that dexterous.

Despe
Despe in reply to LAJ12345

It could be. My husband complains about not having the dexterity he used to have, but he still folds and irons clothes and other minor jobs that require use of his hands. The most difficult thing for him to do is to squeeze lemons for his nightly lemonade. I end up finishing the task. :)

LAJ12345
LAJ12345 in reply to Despe

Yes mine used to do the washing folding and some dishes but he can’t now. The deterioration of the hands Has been quite fast recently. He has been doing a lot of sitting at a pc playing bridge and I feel it has made him worse but he will not desist🥺

Despe
Despe in reply to LAJ12345

Mine still does the dishes and other chores (after asking him several times, :) ). He has just come back from the gym where he went to lift weights. . . The most bothering symptom is his scooped posture (not always), and we are trying to find a way/someone to work with it. I was thinking about a personal trainer as he lacks initiative to do posture exercises at home. :(

LAJ12345
LAJ12345 in reply to Despe

Mmmm, mine has an extreme flat upright posture but lower back scooped in so bottom sticks out a bit. Not the rounded shoulders.

Astra7
Astra7 in reply to Despe

Folding clothes is surprisingly difficult with PD. I think it’s getting the left and right to work together.

Despe
Despe in reply to Astra7

So far, he uses both hands. :)

Godiv
Godiv in reply to LAJ12345

I’m sorry I keep popping in with maybe not necessarily helpful ideas. This might sound really stupid but I wonder if he would like a hand wax dip thing. You know those machines that have the warm Wax, and you put your hand in it and come out with wax on your hand and then put mitts on your hands. Then of course later the wax comes off. But I had it done once and it was very soothing to my hands. It wasn’t a miracle cure but I have stiff hands and I really enjoyed it. Maybe you could use that as a kind of a potential lure/treat to get him to do something else.

LAJ12345
LAJ12345 in reply to Godiv

No idea is stupid if it works. I’m open to any suggestions😊.

The problem is he is very reluctant to try anything new especially if it involves going anywhere new so I don’t think this one will fly😆

Godiv
Godiv in reply to LAJ12345

LOL. I hear you. I was thinking of a home treatment, but who knows how much those wax things cost! I know how he feels in a way: there's something about Parkinsons that makes it difficult (as least for me) at times to go out. It's anxiety and discomfort, and he's suffering both badly at the moment.

LAJ12345
LAJ12345 in reply to Godiv

Yes, it’s that apathy.

Hugs to you Wonder Woman. You hv been an awesome caregiver. There are limits to what you can do too so please do take care of yourself. When you feel overwhelmed remember God loves him more than you do❤️. Rest in Him.

LAJ12345
LAJ12345 in reply to Millbrook

Thanks❤️

Ask your physician to prescribe Kemadrin for him. Excellent medicine for rigidity

LAJ12345
LAJ12345 in reply to iqbaliqbal

Ok thanks I will look into whether that is available here.

LAJ12345
LAJ12345 in reply to iqbaliqbal

Is this an anticholergenic? Isn’t this bad for the brain?

iqbaliqbal
iqbaliqbal in reply to LAJ12345

Kemadrin contains a medicine called procyclidine. This belongs to a group of anticholinergics. They stop a substance called acetylcholine working in your body.

Kemadrin is used to:

treat and relieve the signs of Parkinson’s disease such as:

stiff muscles, paralysis and tremor

problems talking, writing and walking

producing too much saliva and dribbling

sweating and uncontrolled eye movements

depression.

stop side effects called ‘extrapyramidal effects’, which are caused by some medicines. These may include signs similar to the Parkinson’s disease or restlessness and unusual head and body movements.

Source: medicines.org.uk/emc/produc...

I know PWP using this medicine for more than 15 years

LAJ12345
LAJ12345 in reply to iqbaliqbal

Ok thanks. I thought anticholergenics cause dementia. He takes citicoline which I believe does the opposite? He has tried stopping this along with other things and was overall worse without them but I haven’t tried stopping it on it’s own.

iqbaliqbal
iqbaliqbal in reply to LAJ12345

Better to discuss pros and cons with doctor. He will guide better

When you say Madopar makes him agitated, what do you mean? He really is taking very little and probably not beyond the therapeutic level. I started on similar amounts but found real benefit once I moved to 100mg doses

LAJ12345
LAJ12345 in reply to Buckholt

Even with 4 62.5 mg tablets of madopar he becomes extremeLy anxious wanting to crawl out of his skin, saying I just want to die I can’t stand being in my body, pacing up and down like a junky needing a hit. Then he started juddering, not a normal light tremor. He was much worse with more.

He has a similar reaction to sertraline.

And it doesn't make the stiffness any better.

ChrisWF
ChrisWF in reply to LAJ12345

Has he ever tried CL? Like Sinemet or a generic? Or Stalevo?

LAJ12345
LAJ12345 in reply to ChrisWF

Yes he started on kinson which is generic sinemet and that was 100 but that was even worse as it was stronger plus without the coating he nearly vomitted each time he took it.

ChrisWF
ChrisWF in reply to LAJ12345

Sorry, I thought maybe that was an unexplored path and that it was the benzaseride he was reacting to 😔

LAJ12345
LAJ12345 in reply to ChrisWF

No sorry I should have mentioned that first.

Godiv
Godiv in reply to LAJ12345

They can’t give him Carbidopa with that? With the levodopa meds I mean generic or Sinemet Carbidopa really helps the nausea. If I took Sinemet without it I would just throw up. The nausea is really awful without carbidopa and that was extra. The pills themselves had some in it but I had to add on Carbidopa.

LAJ12345
LAJ12345 in reply to Godiv

Thanks I will look into it.

i use a muscle relaxant and exercise, hang tough.

LAJ12345
LAJ12345 in reply to beehive23

What muscle relaxant?

beehive23
beehive23 in reply to LAJ12345

cyclobenzaprine.........look it up i dont like to give out brand names online but look it up and you will likely recognize it. if not let me know and i can private message you............acupuncture works for me as well....but now at this stage im graduating to botox injections then my backup plan is apomorhine self injection ...alread approved just waiting for my say so..cheers......

LAJ12345
LAJ12345 in reply to beehive23

Is this more for cramping? I just looked it up. It seems like it might be more for occasional use. Do you use it all the time?

beehive23
beehive23 in reply to LAJ12345

well its for severe dystonia which is cramping in effect, it relaxes the muscles dystonia is mega pain in mid-later stage pd......but as i indicated im graduating to botox injections along my shoulder spine area.....i use it PRN so only when i need it like after chopping wood or something like doing dishes which are EXCRUCIATING........but i do not abuse it......no regular set dose...........i control my own dosing and meds my docs know this and just writre the scripts..........

I have had some success with acupuncture. Some movement restored & pain reduced in left arm. Took 4 sessions for changes to show & may decide to have a maintenance appointment once a month. Good luck

LAJ12345
LAJ12345 in reply to Biff69

I have managed to get him to go once for acupuncture but he won’t go back as he doesn’t believe it can work, and at the moment he is hard to get him to do anything

Biff69
Biff69 in reply to LAJ12345

Acupuncture isn’t a quick fix. I was worse after first consultation & only started seeing an improvement after 4 weeks. I did weekly for first 4 appointments then moved to fortnightly for 3 sessions before going 3 weekly & now monthly. But it works so is worth persevering. Good luck. Gary

LAJ12345
LAJ12345 in reply to Biff69

Right, I have new motivation to try and convince him to go again. He has this mindset that he isn’t worth spending money on as he is going to die and nothing works. He struggles getting clothes on and off and can’t lie still as he gets very agitated so that might be part of it.

Godiv
Godiv in reply to LAJ12345

I’m so sorry. It’s so difficult to do stuff when you feel miserable. He is very lucky to have you, And I hope you’re taking care of yourself too. As best you can of course. But know that when you feel that bad it really really is hard to get out of the house or consider that might be solutions.

LAJ12345
LAJ12345 in reply to Godiv

🌹

LAJ, my wife’s pain management doc has prescribed Pregab for my wife’s shoulders and arms. Possibly will do ablations on her C4-C5-C6 areas and hope that will help her shoulders and arms.

Will update after we get this ball rolling. A

LAJ12345
LAJ12345 in reply to Andrac

Thanks I will investigate this.

LAJ12345
LAJ12345 in reply to Andrac

Is the ablation for pain or movement? He has no pain there but is as rigid as a board through the shoulders.

Andrac
Andrac in reply to LAJ12345

It will be for pain, she still has a good range of motion it’s weak and painful though.

I have a message for your husband.

"Dear LAJ's Husband,

You have no idea how lucky you are to have a wife was so dedicated to your well-being. I tell you from experience that not everyone is blessed with such a loving partner. If you cannot be bothered to help yourself with things that she suggests for you – do it for her.

Do not risk burning out your caregiver! If you continue to give up on yourself, eventually she will give up on you too, and you will be in a real fix.

I live alone. Keeping myself in workable condition is literally a do or die proposition. That works for me, but I do not think you want that.

Sincerely,

Park Bear"

Godiv
Godiv in reply to park_bear

Wow, you are so right. Gosh, I would love to have a caretaker LOL. It’s kind of a lonely struggle and if you live alone like I do too, you really have to work hard to stay in shape like you said. And be self motivating.

LAJ,

Have you tried Magnesium Oil spray? It really helps with stiffness and pain. How about MP, has he tried it?

I have a couple of times but yes I must try that again, and add it to the daily routine. He tried mp before the pharmaceuticals but they had no effect, And the purer more processed ones made him nauseous like the Kinson . But then the pharmaceutical ones don’t help the hands either.

I get that agitated, want crawl out of my skin feeling from glutamine.

You might consider just dropping the d-ribose, if he still takes it.

ncbi.nlm.nih.gov/pmc/articl...

"We found that long-term oral administration of D-Ribose impairs spatial learning and memory, accompanied by anxiety-like behavior."

How about fecal microbial transplant - my daughter said no way, even though I'm pretty sure it would help her (for complications from Celiac).

LAJ12345
LAJ12345 in reply to Rhyothemis

Ok I’ll try stopping the ribose.

I don’t know if fecal transplant is available in NZ? I’m pretty sure he would say no. I know they were doing research on fecal transplant for obesity here and it was in a capsule but I contacted the researchers about it was possible to try the same thing but they weren’t allowed to allow people out of the trial to use it

Rhyothemis
Rhyothemis in reply to LAJ12345

I feel for you, I really do. My daughter ... sigh ... (it's true that there's a lot of stuff she can't try, though, due to allergies).

Just from a quick search it looks like there is work on FMT in NZ, but there may be regulations on what conditions it's approved for .

In the US people at one point people were doing DIY versions, but that seems like it might not be safe. The small trial in China that showed benefit in PD found the colonic form worked better and of course you need a doctor to do it.

journals.lww.com/md-journal...

What I find fascinating is that mouse studies have shown anxiety and depression - like behaviors can be altered by FMT.

LAJ12345
LAJ12345 in reply to Rhyothemis

Yes I think it could work but as it’s experimental and has to be done by a doctor it’s hard to try

This sounds so much like my husband. He can’t button clothes, wash himself, utensils are very hard to handle, etc...

LAJ12345
LAJ12345 in reply to ssrs

What drugs is he on? Has he taken mirtazapine or SSRIs like sertraline or fluoxetine?

LAJ12345
LAJ12345 in reply to ssrs

Does he get very agitated with medications?

How are you? 💐

LAJ12345
LAJ12345 in reply to Cleo16

I'm ok. Trying to stay positive.

LAJ,

Next visit to the doctor, ask him about the possibility that your husband has cervical spinal stenosis. I had this a very long time ago and I went to a chiropractor who was very clear on what was wrong with me and he treated my neck with a tens machine, ultrasound, acupressure and icing with almost no spinal manipulation. He helped me in just two visits after the previous chiropractor I had seen over 20 times for the problem was able to do nothing for me. The chiropractor before him was even worse!

My case was really bad and the muscles in my hands were atrophying to the point of when I would reach in my pocket to pull my keys or change out, it would all fall on the floor. The last chiropractor was really good and he told me he thought he would be able to help me, but he said if he couldn't, it would require surgery. I had tremendous pain in my shoulder areas and it radiated down both arms and standard pain relievers did not touch the pain. My hands would occasionally feel numb or like pins and needles. After 3 days of icing 3 times per day, I could start to feel some relief. Chiro told me to pay close attention to the pain and at the first sign of pain, start icing and he said if I did that, I would likely be able to stop the problem cold in its tracks. He was correct! It worked on the couple of times I felt the pain coming back.

It took a year for my hand strength to come back, but had I actively exercised my hands, I'm sure they would have been back to normal in less than two months.

Art

faridaro
faridaro in reply to chartist

So interesting, glad this treatment helped you and thanks for sharing your experience Art - always learn something new from you. It seems that the challenging part is to find a good chiropractor - do you have any suggestions what to look for in search for the right one?

chartist
chartist in reply to faridaro

faridaro,

I think I've been to about 7 or 8 chiropractors in my life and he was easily the best. The very first chiropractor I went to was second best, but there was a huge gap between him and number one. The one who was able to resolve my condition was far and away the best of the bunch and used the most options on me.

It is hard to know what any individual chiropractor knows, but experience is important and he retired about two years after I saw him, so he likely had plenty of that. He also was a very good listener because he asked me quite a few questions at my first appointment and went to great lengths to respond to each of my answers. It was clear he was listening to what I was saying by the way he responded to my questions. He never made me feel that he was in a rush to get to his next patient. He always gave clear and understandable explanations to my questions regarding the use of ultrasound and the tens machine. He even went into detail on the proper way to ice. He didn't just say, go home and ice regularly. He explained my options clearly. He explained about the other chiropractors I had seen and why their methods didn't work. He didn't try and book me ahead for extra treatments, he simply said to come back if I felt I needed further treatment. I booked a third treatment just to make sure he had done everything he could do for me even though the pain was already gone. Instead of suggesting I come back for regular checkups every so often, he told me that if I didn't have any pain, there was no need to come back. No of the other chiropractors I went to offered TENS treatment or ultrasound.

He was everything I could have ever hoped to get from a chiropractor and everyone I had been to before him was clearly lacking. I went to a female chiropractor who only asked two questions about what was wrong with me and it seemed like she wasn't even listening. She had her girlfriend in the office with her and they talked to each other about parties and dating while she worked on me as though I wasn't even in the room! I felt she was very unprofessional and her treatment didn't help me at all, in fact I felt worse after my second visit and decided right then and there I was never going back!

Unfortunately, finding a good chiropractor is like finding a good neurologist. I think the best way is if a friend recommends them highly. Otherwise, you can see from comments on this forum, it is pretty much hit and miss.

Art

faridaro
faridaro in reply to chartist

Thank you Art for such detailed response - it gives good guidelines for qualities and methods to look for. A few years ago I've had a frozen shoulder and went to a chiropractor hoping to get some relief. However, something in that place made me feel uncomfortable and while waiting in the exam room for the doctor, I decided to leave ( to the dismay of the office workers) then ended up getting some physical therapy instead. Now I'll have more factors to keep in mind when choosing a chiropractor.

LAJ12345
LAJ12345 in reply to chartist

Thanks this is very helpful. Whether I can get him to go to a chiropractor is another thing. Can I do any of this myself? How does icing work?

He will let me massage him but sometimes I get busy!

chartist
chartist in reply to LAJ12345

Getting a diagnosis of cervical stenosis is most helpful so you have a better idea of what is needed.

I remember the chiropractor used a deep tissue type of pressure where he dug his knuckle into specific points in my upper shoulder area where I think he was trying to get the tense muscles to relax.

Icing is merely application of ice packs too the lower neck and upper shoulder area. He told me that doctors will generally tell you to ice for only 20 minutes at a time, but he said that in his experience, icing for longer is more helpful at quickly reducing the inflammation and inflamed nerves caused by the constriction of cervical stenosis. He gave me two of the nicer "soft ice packs" and told me to use one until it was only cool and no longer cold and then to switch to the second ice pack until it was only cool. He said to do this 3 times a day or more until the pain was gone. He said to keep a regular towel, not a thick one, between me and the ice pack at all times to prevent damage to the skin and tissues. The soft packs are more comfortable than the harder packs. Icing is a highly potent antiinflammatory. He suggested not using heat even though it might feel relaxing because he said it can exacerbate the inflammation.

It might also be worthwhile to try a topical product between icings, called "Stopain Extra Strength ". It comes in a roll on and is easy to apply. Here is a link to the product :

walmart.com/ip/Stopain-Extr...

Art

LAJ12345
LAJ12345 in reply to chartist

Great thanks. Anything I can do he will probably accept but anything that involves going anywhere or costing much money he will reject as his agitation means he can’t cope and he feels unworthy of money spent even though I tell him I think he’s worth it😂

LAJ12345
LAJ12345 in reply to chartist

He doesn’t have pain just loss of use. Does It help with that? We have a product called antiflam that has menthol in it as well as other things. I might try rubbing that On. It feels nice.

chartist
chartist in reply to LAJ12345

I had pain and stiffness, but some people with CS don't have much pain, just discomfort. This is why an actual diagnosis is helpful.

Shoulder stiffness is common in PD, but spinal stenosis is too.

Art

Hello Laj

I am so sorry your husband is going through this. Unfortunately, I am not surprised. Your husband's PD sounds so much like mine...

In my opinion, you cut one of his doses of levodopa meds recently which relieved his agitation (c/l induced akathisia: feeling of inner restlessness).

This resulted in more rigidity and reduced his dexterity (akinesia: inability to produce movement), just like me.

‘’And he starts having sort of spasms’’ (c/l induced dystonia: sustained muscle contractions), just like me.

In my case, akathisia and dystonia start exactly one hour after taking c/l, and increase with each dose during the day.

I have had to reduce my c/l by 100mg about every one to three months, from 700mg IR (Immediate Release) a day to 300mg of CR (Continuous Release : equals 210mg of IR) which resulted in loss of autonomy: need help to dress, wash up, can't walk more than 2 or 3 min, etc…

Hemp oil, cbd oil gummies and pot helped my agitation and c/l induced dystonia for a while but it didn’t last.

To your question ‘’What do people use for very stiff shoulders and arm, and loss of dexterity?’’

My shoulders too are stiff, ie can’t put on my coat by myself, and akinesia has got me unable to wash or blow dry my hair by myself. Unfortunately, he is under medicated (PD meds) but he can’t take more meds because of side effects.

Your husband never had much response to c/l. For me, it started to yield result in walking at around 500mg a day, which only worked for about 2 months. I increased to 700mg which worked well for a while but the side effects were worse than the pd by then. So it’s a no win situation: I need over 700 mg to be functional enough to walk and/or workout at a pace that would slow progression, but I get horrible side effects starting from 300 mg a day.

So, what to do?

I turned 59 at the end of August. I asked to be evaluated for DBS last year, but I was diagnosed in 2017 and like Hikoi says, I am not eligible. Not sure I would have gone through with it... Skull being drilled, hardware inserted permanently, etc. But most of the testimonials are quite good, so might have if was accepted by this classic medical protocol (went through my MDS office).

Luckily, I was rightfully assessed as ‘’PD Med Resistant’’ by Sonimodul and will receive FUS PTT in Feb, if Covid allows me to get a flight over there.

As far as exercises, although I would have thought like Park_Bear a couple of years ago, I have to say I understand your husband’s behavior. If like me, he is very under medicated, it makes it impossible to exercise. I had been very active all my life, hiking a whole lot, and enjoying moving as much as possible. When diagnosed, I hired a kinesitherapist specialising in PD, who came to my home and built a program for my needs. I also went to yoga and Chi Quong classes, etc. but progression and being under medicated took its tool and it all became impossible.

Undeniable, he is very lucky to have you and I congratulate you for everything you do for him. But I would not tell him ‘’If you continue to give up on yourself, eventually she will give up on you too’’, because I have a great spouse too, and if he were to tell me something like that, I would be desperate… really very desperate.

I hope something in this helps.

LAJ12345
LAJ12345 in reply to Parkie-

Thanks this does sound almost identical, even your age. Do you take other drugs too eg antidepressants? Do they have the same effect?

When he was first diagnosed I used to try and get him to exercise by being tough but it was counterproductive. He needs soothing and calming and any kind of making him feel guilty or growling just makes everything worse. He just needs lots of hugs and reassuring.

Hikoi
Hikoi in reply to LAJ12345

LAJ i agree with Parkie that your husband is undermedicated. I also note he has taken antidepressants but keeps reducing them. Unfortunately his depression is just getting worse. I havent been on them but I know that it can take a few tries to find the right one and for both antidepressant and sinemet or equivalent only perseverance until his body adjusts will get him through. These are powerful drugs and it can take weeks for our body to adjust to them,.

Its tough.

Clonazapam is anti anxiety so different from an antidepressant. We dont have patches in nz unfortunately. I thought I had cervical stenosis but it went with sinemet. I am afraid you can try all the alternatives in the world but he needs levadopa to get his muscles working.

LAJ12345
LAJ12345 in reply to Hikoi

The antidepressants make him agitated and suicidal. He doesn’t ever seem to be able to stand enough of anything to actually work for him. He’s tried fluoxetine, sertraline and mirtazapine. Mirtazapine made him so dopey and apathetic it made him look like he was 90 and I feel like that was the beginning of his PD symptoms. Fluoxetine worked for about a year but then stopped working and made him suicidal. Sertraline made him very agitated and suicidal at the prescribed dose but seems to be ok at the reduced dose for a while but now he is agitated again. That started with the introduction of levodopa. His brain just seems to overreact to anything. He has always got every side effect of any drug he has been on.

Hikoi
Hikoi in reply to LAJ12345

Oh dear, how very difficult for you both.

I also take Neupro patch 2mg. No antidepressant. I took Clonazepam for a short while and my experience with just a few doses was bad. My MDS prescribed it for REM sleep disorder and for the physical agitation caused by C/L. I ended up crying many times a day, feeling depressed, ruminating all day on issues that hadn't bothered me in years... All of these stopped as soon as I stopped clonazepam...

I agree that growling just makes things worse.

LAJ12345
LAJ12345 in reply to Parkie-

Interesting. He had been taking a 1/4 of a clonazapam to calm him from agitation caused by levodopa but something is making him suicidal again. He has now stopped that and has been using the hempress oil for a few days which seems to be helping.

Parkie-
Parkie- in reply to LAJ12345

I sympathise with you. I wish I could help. Lets keep in touch if one finds something helpful.

Has he tried mannitol?

LAJ12345
LAJ12345 in reply to Astra7

Yes he has been taking it for more than a year now.

My husband was diagnosed last May. The first 9 months were dreadful with anxiety and suicidal thoughts. My husband was given a medication named Venlafaxine which changed our lives overnight. He had lost stones in weight and rarely slept before this. Although this won’t help the physical symptoms it will help the horrible anxiety. I recommend speaking to your gp about this medication. It was one of two which are recommended on the Michael J Fox website. Hope this helps. Take care.

It's trade name is Effexor. Once started , you have to be on it permanently. It has severe withdrawal reaction (can cause death'as well) if stopped suddenly.

Ashwagandha and bacopa monnieri are good herbal alternatives

LAJ12345
LAJ12345 in reply to iqbaliqbal

We tried those early on but they didn’t work. Ashwagandha apparently can have high levels of heavy metals.

LAJ12345
LAJ12345 in reply to FutureWell

Thanks, I’m wary of pharmaceuticals as every one he tries he gets the rare side effects. He is already suicidal and this has a black box warning.

Andrac
Andrac in reply to FutureWell

My wife a PWP has been on Effexor for several years and it definitely helps her through the day. They have just added Mirtazapine and so far there is no unusual side effects.

LAJ12345
LAJ12345 in reply to Andrac

Mirtazapine was the beginning of my husbands problems. Made him so apathetic, froze his face. Instantly turned from a 57 year old to a 90 year old.

LAJ12345
LAJ12345 in reply to Andrac

Sharoncrayn are you there? Do you know anything about Effexor?

Ps. He also had the same reactions to sertraline and mirtazepam that you describe until he went on to the venlafaxine which changed both our lives.

Initial dose was 75 mg three times a day which was increased gradually over a month to 150 mg three times a day which is his optimum dose. Although we could see a difference even in the first few days on the lower dose. Only downside is cannot have any alcohol at all with this. But my husband has learned to live with this for the massive benefit it brought to our lives.

Pps it is also supplemented by popranolol twice a day. I believe it is the combination of this medication which has resulted in the massive improvement in anxiety and agitation.

And reference being on this for life. My husband is happy to be on this for life for the benefits this has brought to him.

In the uk it is known only as venlafaxine no trade name.

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