Help for FOG

[Bonnie2022]

My husband dx one year ago has rapidly progressed FOG and terrible balance. He falls several times weekly with only bruises thankfully. He never responded well with carbidopa and these are his main symptoms right now. I have purchased many adaptive devices ie walkers, canes, etc which he has not found helpful. He lives for the approval of the vibrating glove. He is 74. Any suggestions? Thank you.

[NuroMod]

Hi Bonnie2022, I forgot to ask - does your hubby have any tremors and if so - which part of the anatomy ? And what about shuffling ? Thanks.

[Bonnie2022 in reply to NuroMod]

No tremors. Used to shuffle which is what brought us to neuro. At least then he could walk.

[bassofspades]

Brain fog was a terrible nuisance for me for many years. I finally got it well under control when a doctor suggested that I try a supplement called Lithium Orotate, which he recommended very highly for all of his patients with Parkinsons. Here is one of my many posts about the subject.

healthunlocked.com/cure-par...

I have been on 15mg per day for several years and am enjoying good results and no negative effects.

The way I was taught to find my dose is start by taking 5mg per day and re evaluate in 2 or 3 weeks. If you don't notice any difference add 5mg. Keep re evaluating every 2 to 3 weeks and 5mg increments. The max dose that was recommended to me by my doctor was 20mg. If you dont get any satisfaction on 20mg per day after a few weeks at that dose then its probably not going to help. Discontinue if you have any adverse effect, but that is unlikely. Dose timing is not important since it takes time to build up a result. Its not a rescue drug.

read this book

amazon.com/Nutritional-Lith...

I urge all with parkinsons to read it! My doctor insisted that I read it and it changed my life miraculously.

[park_bear in reply to bassofspades]

I too initially thought this was about brain fog but it turns out that FOG stands for freezing of gait.

[bassofspades in reply to park_bear]

Thank you for CLARIFYING that! LoL. I can't help with freezing of gait. Maybe rock steady boxing?

[Bonnie2022 in reply to bassofspades]

Thank you bassofspades. Will look into it.

[Bonnie2022 in reply to bassofspades]

Thanks bassofspades. Need to look into this.

[bassofspades in reply to Bonnie2022]

Just to be clear, I was not aware that the FOG you were referring to meant FREEZING OF GAIT, I thought you meant brain fog. I never had freezing of gait and I cant say if Lithium Orotate will help with that. I do recommend that all persons and caregivers of persons with Parkinsons Disease read that book I linked, though.

[garygjs]

Hi Bonnie

My mum struggles with FOG. She uses a 3 wheeled walker. I've - perhaps halfheartedly - tried a few things: music, laser lines, the Cue1...but to no avail...

Sometimes I feel that calling out, "Left, Right, Left, Right" as she walks is helpful, but at other times, I'm less certain it helps. (Mum has vascular dementia so, by necessity, all cues must come from me.)

The only method I've used that works reliably is well known: I walk very closely behind her, hold her torso under the armpit and very slightly lift the weight off her struggling foot. (This is by no means a huge physical effort..it's more a subtle shifting of weight that most all should be able to accomplish.)

Citcoline (750mg-1000mg per day) has greatly improved her gait and very slightly improved her FOG...though that requires some qualification:

While her initiation of movement from, say, getting up is only very slightly improved, it is the case that certain obstacles - eg a narrowing passageway or threshold - are less likely to give rise to FOG because she is walking with such speed that she is through the problem before FOG can arise.

(Should you use citicoline be mindful that most have to/ are able to cut their Levodopa dose by up to 50% ).

Thanks for asking the Q. I look forward to hearing what NuroMod has up his sleeve.

[Bonnie2022 in reply to garygjs]

Thank you garygis. Have not tried that.

[PixelPaul]

Frequent falls so early after diagnosis is a bit uncommon to PD, usually they occur much later in the disease progression. That combined with his unresponsiveness to levodopa makes me wonder about the possibility of an atypical Parkinson’s disorder. Has you neurologist or MDS ruled out MSA, PSP or any of the other “ Parkinson’s Plus” disorders?

[Bonnie2022 in reply to PixelPaul]

Hi pixelpaul. He had an MRI of brain which we have not yet discussed with neuro. She does thinks he may be PSP or MSA. Diagnosis of those are tricky but perhaps it has been ruled out or not with MRI. Obviously neither are good as no treatment no cure and terminal.

[crewmanwhite in reply to Bonnie2022]

The causes and recovery strategies for MSA and PSP are exactly the same as for PD.

I have had patients with both (and I had early MSA), and the same protocols and changes work.

[chartist in reply to crewmanwhite]

That may be your experience, but data on MSA compared to PD shows otherwise :

pennmedicine.org/for-patien...

Relevant quotes :

' There is no cure for MSA-P. There is no known way to prevent the disease from getting worse. The goal of treatment is to control symptoms. '

' Dopaminergic medicines, such as levodopa and carbidopa, may be used to reduce early or mild tremors. But, for many people with MSA-P, these medicines do not work well. '

' Outcome for MSA is poor. Loss of mental and physical functions slowly get worse. Early death is likely. People typically live 7 to 9 years after diagnosis. '

MSA is a much more aggressive, faster progressing and deadly disease than PD and relatively quickly, PD medications are no longer effective.

In comparison, the following link gives the life expectancy for PD :

griswoldhomecare.com/blog/2....

Here is a relevant quote :

' It should be noted that the life expectancy of Parkinson's disease can be normal or near normal. However, a number of factors can shorten life expectancy. According to the Michael J. Fox Foundation for Parkinson’s Research, patients usually live between 10 and 20 years after diagnosis. '

People on this forum have reported even better life expectancy than 20 years after diagnosis for PD.

Medications for PD are more effective for the patient and the efficacy is significantly longer than in MSA.

Art

[Bonnie2022]

Hi Nuromod. Thank you. Responses below

Hi Bonnie2022, Can you please elaborate on your hubby's FOG ? e.g. a) when does it occur ? b) under what conditions/ circumstances and is it repeatable ? In doorways but can be anywhere. c) how long does the FOG episode lasts ? 15 seconds. They occur more often and last longer. Seems worse every week. d) can he (still ) move his hand when FOG occurs , voluntarily ? Yese) how often does FOG occur in a day ? f) 10+ times. What type of cane & walker did you purchase to help with the FOG - more details please ? Walker with 2 wheels recommended by neuro. Tried laser light cueing octane. No help. No cane works due to poor balance. g) How do you DeFOG him currently ? He uses verbal cues. A strategy to try to help DeFOG is to leverage one or more of our 5 x senses. A consequence of FOG is the inability of the brain message - a specific set of action potentials to assert the muscles fibers to 'pull' the muscles to lift his leg and hence walk - to reach , usually , the lower motor neurons. Those messages are " MIA" down the pathway !. but, fortunately, our body structure / physiologically - works in parallel mode. So, if we can piggy back on one or more of our inherent 5 x senses - it can potentially DeFOG the PwP ( Person with Parkinsons ) , in essence, by-passing the "jammed highway" - so to speak - with a detour !! . The other senses - form the basis of the detour . I have done some work on the senses of Visual ( light ) , Touch ( haptics ) and Sound ( Audio ). The efficacy depends on the PD severity etc and like meds, varies with different PwP. I'll comment more when I receive your responses.

[chartist]

Here are a few sites that may be of interest :

parkinson.org/blog/science-....

davisphinneyfoundation.org/...

frontiersin.org/articles/10...

Art

[crewmanwhite]

I have found clinical Pilates (one on one instruction) really helpful for these symptoms.

[Bonnie2022 in reply to crewmanwhite]

please explain clinical pilates. I have taken Pilates for years but never heard of that. Do you have FOG and if so did it help?

[Sydney75 in reply to Bonnie2022]

Private lessons with rehab trained on pilates equipment

[crewmanwhite in reply to Bonnie2022]

Sydney75 is quite correct. Clinical Pilates is one-on-one instruction with a well qualified Pilates teacher, using both the mat and a variety of equipment to focus on individual muscle groups or challenges.

This can either replace or supplement group classes and/or mat exercise.

He may only need individual attention for a few months to get his proprioception happening again.

In the early stages of diagnosis/recovery, I had extreme festination and 30-40 falls per day as have some of my patients. Clinical Pilates has been great at starting the proprioceptive recovery pathway.

[Ob6842 in reply to crewmanwhite]

Where would one call to find these classes? Rehab centers, health clubs?

[crewmanwhite in reply to Ob6842]

Look online for specifically clinical Pilates and make sure the classes are one-on-one.

[OKWY]

Hi Bonnie, my husband has progressed to a 4 wheel walker (foldable) that can also be used as an emergency wheelchair indoors. He finds the standard walking frame or even front wheeled frame impossible to use as he wants to push things because else he gets stuck even in a 3mm tile grout line. He pushes down so hard because of his stooped posture. The 3 wheeled walker was his favourite indoor walking aid for a long time until he had a couple of falls because it can tilt if pressure is put on one side only, so watch out for that.

He gets FOG similar to what you describe. Then when he moves he ends up leaning forward and on his toes. I often need to remind him to put his weight on one leg and then to lift his empty leg and "heel first". To initiate he sometimes asks for a "wiggle", that's when I'm gently pushing his hips from side to side. Sometimes I tell him to imagine going up a ladder. When he's moving but his feet won't go anywhere other than a few millimeters, then I ask him to "count". Counting out loud, he will do really nice big steps, but after about 6 or 7 it's getting slow and short again. The worst thing is when I get frustrated, because I have tried so many different tones from calm command, startling "now do it", pleading "please", begging, and everything else a logie winning actress should have in her repetoire. Does not work, because when frustration sets in or he feels under pressure it will only make things worse.

He doesn't respond much to Madopar and at a full normal dose (3 x 200/50mg) he had hallucinations and panic attacks. On half the dose he's ok. We think his parkinsonism has to do with a genetic mutation in the OPA1 gene, which causes problems with the optic nerve and can affect brain and muscles. He is still waiting for his brain scan. Neuro hasn't excluded PSP or MSA either.

All the best.

[healthabc]

Here's a hack-

try small post-it page markers- they're like little post-its, but they're plastic... make a trail of them on the floor, like stepping stones. not too far apart, but reasonably. Try it out & let me know if it helps. works for me. I have my trail in the kitchen ,to the coffee machine & back to the table.

Every so often, change the post-it color. It keeps things 'fresh' .

[gwendolinej]

when Madapar did very little for my husband, the neurologist tried the Neupro patch. The results were amazing. The problems weren’t the same as your husband’s, but that may not matter. It took a few weeks to see the changes. He’d been diagnosed with Lewy Body dementia, which then changed to PD.

[Bonnie2022 in reply to gwendolinej]

what is Madapar? I will ask neuro aboutvthe patch. Thanks.

[Sydney75 in reply to Bonnie2022]

Brand name carbidopa levodopa gold standard PD meds