Falling backwards

[Parkiewife]

Hi! For several weeks now, I have observed my husband (who has frequent falls). Noticed that he starts rocking on his heels and eventually the fall occurs. Has anyone else experienced this (or your significant other has)? If so, how have you handled or prevented it from happening? He has a walker but refuses to use it. Help!

[SilentEchoes]

I have noticed with my mom that when she falls it is backwards. In my own balance tests, I was not able to catch myself in the backwards motion, and performed better with the forward motion. In real life, if someone bumps into me I cannot break the fall.

PSP features falling backwards. I believe there is considerable overlap among neurological disorders. My mom has PD and I have ALS Plus syndrome with sensory ataxia (positive Romberg).

mayoclinic.org/diseases-con...

My mother's caregivers use a transfer belt and she is not allowed to walk unassisted, even with her walker. Her husband does not observe this protocol, and she has been injured from landing flat on her peritoneum, which caused internal bleeding. This might be TMI but it serves as a warning to others.

You might want to consider a reevaluation of his diagnosis.

Best Wishes

*My thoughts and opinions are not a substitute for your relationship with your doctor. Do your own research and form your own opinion.

[Parkiewife in reply to SilentEchoes]

Thank you! He does have a gait (transfer) belt. I can only say: Stubborn, stubborn, stubborn!

[SilentEchoes in reply to Parkiewife]

I'm going to buy a set of nordic walking poles, they help with balance training. Maybe if you present them as exercise (which they are) he'll be more willing to use them.

I have a walker in my car but I just can't bring myself to use it. I know better and haven't fallen in a while, but I'm pushing my luck. I think the walking poles might attract less attention. Just a thought.

[GymBag]

My experience has been that I tend to fall back and to the right. It is like I am walking on a water bed and waves are coming across the floor . The bottoms of our feet help the brain keep us balanced and there appears to be a broken wire in communication. My feet are telling me that vertical is to the right and back. My brain then reacts and I move to far back and right and boom. I find a wheeled walker is mandatory. For some reason the problem gets worse when standing on an a dangerous place like a step ladder . If I stand on a ladder long enough ,I will fall off for no good reason.

Please give him this message.

USE THE DAMN WALKER

A broken Hip is more pain than you can believe and at your age may be not treatable. Well at least you wont fall out of your wheel chair.

[SilentEchoes in reply to GymBag]

Stay off ladders! LOL

But seriously, this sounds like sensory ataxia, this affects the central nervous system. I can't do ladders or step stools, tipping my head back can start me swaying. Has anyone tested you?

It's the Romberg test and you can do it yourself. I think it's important to know how our nervous system is affected.

We need feedback from our vestibular system, vision and cerebellum to maintain balance.

If you do the Romberg test you need to be safe. Find an inside corner of a room and use a chair. You stand with your back to the corner without touching it and place the chair in front of you so that you can grab the back if you start to fall. It's best if you have a helper.

Stand still with your eyes open for 30 seconds (this is proprioception). Do you start to sway? What happens when you close your eyes? For people with sensory ataxia they immediately begin to sway and may even fall.

I share this information to empower people to take care of themselves. I haven't tried the walking poles yet, but I'm hopeful they will help me retrain my brain and improve my balance. Hope this helps.

[Parkiewife in reply to SilentEchoes]

Thanks! I will try this with my husband. Ladders? I had to clean out my attic so D wouldn’t go up there!! Hopefully he remembers that there is nothing up there! 😂

[Angel1947]

I do tend to rock backwards on my heels when getting up from a chair so have to have a space in front of me to 'throw myself forwards'. If out walking about I use a three wheeled trolley to help with balance - tell your husband it is necessary to use some aid - not walker but trolley - it is so enabling.

[GymBag in reply to Angel1947]

My walker has wheels and a seat for when I get tired and brakes and a basket to carry tiskets and taskets in. What is a trolly?

[Parkiewife in reply to GymBag]

That is a Parkinsons walker. Is like a tripod. Has three wheels and is heavy. They say you can’t fall while using it, but try telling my husband that!

[Parkiewife in reply to Parkiewife]

Oops. Meant to say it has 3 wheels up front and 2 in back. It’s called a U Step walker.

[Angel1947 in reply to GymBag]

I always think of a walker as the aid they give in hospital wards often no wheels. I call the 3 or 4 wheel walking aids trolley - some have seats 4 wheels - others 3 wheels have only a bag - both have brakes unlike the hospital walkers. Anyway keeping safe and balanced is important so tell your husband to use one. Best wishes to you both

[Angel1947 in reply to Angel1947]

Agreed. Use the brake lock to stand still too!

[Parkiewife]

Thanks for your response! Unfortunately the Man refuses to uses a trolley (we have one!). Went to the mailbox yesterday, fell down cut his right knee and elbow! I don’t know if depression is in the mix with this blankety blank PD. We have a June appointment with his pd doctor. I think he is waiting for a magic pill to help him. 😩

[GymBag in reply to Parkiewife]

If you read the posts from me and others here you will see that cognitive problems are part of the P.D. circus for some of us. Blankety blank is about right.

Maybe look into if there is a P.D support group in your area that is meeting once a month. It will give you an opportunity to talk to other care givers. Go with out him if he wont go.

You need to be carefull that care giver does not become a 24 hr full time nonpaying job that you did not sign on for. Get help looking after him, and rest and recreation and look after yourself.

[Hidden in reply to GymBag]

Hi Gymbag,

When you marry, don’t you sign up for companionship in sickness and in health. We start going down a dangerous road here. I am seeing more spouses in this forum asking for advice about their Parkinson’s affected partner and the responses I see is to abandon the suffering! I just don’t like where this goes.

[GymBag in reply to Hidden]

Read again . I am not telling her to abandon the patient

[Parkiewife in reply to GymBag]

No worries, GymBag. I am in it for Better or Worse.

Malayappan seems to be saying that a lot of responses from Caregivers that are willing to step away from the relationship.

In the past few days, I’ve decided to evaluate my role, assume more duties, get respite when needed.

[Hidden in reply to Parkiewife]

Agreed. I should have phrased it more clearly.

[Hidden in reply to GymBag]

Agreed. I was just making a statement about the general nature of the conversation.

[Hidden]

Hi Parkiewife,

Before we got affected by Parkinson’s, we had normal lives, proud lives and an ego of some magnitude - healthy or unhealthy (doesn’t matter). We are mostly good people who are suddenly blindsided by a slowly creeping up disease that suddenly cripples us. It is an immense blow to our self worth.

I see your husband, a proud man who is hanging on to the last vestiges of hope before letting go of the despair and accepting the inevitable. We all hope that we can magically get cured (incredible, but true) and try to deal with the loss of independence in our own ways. A magical cure doesn’t exist and might never come, but this is the natural thought process of hope.

I would encourage you to sympathize with him and get him psychiatric help. Depression medication does help.

[Parkiewife in reply to Hidden]

Thank you.

[allentimtim]

I have the same issue ,,,,, I get up slower and make sure I am thinking about moving forward. sounds simple but it is very hard I have bumps and broses everywhere. I know this is not much help but I try everything I am tired of meeting the floor

[mannp]

When I would fall it would always be backwards. My falling stopped along with other symptoms when I started taking High Dose Thiamine(HDT). This is b1 Thiamine hcl. It has to be the Thiamine hcl version. Other Thiamines such as mononitrate don’t work. You can find out more on Facebook group called “Parkinson’s Thiamine hcl”. This also stops progression!!

[mannp]

The b1 Thiamine hcl protocol is much better and more effective then the prior suggestions. I take 1 gram twice a day total 2 grams. My sense of smell improved, no more falling, no cramping and curling under of my toes, constipation gone, eyes focusing better, no more UTI’s and improved incontinence, I can rollover again although still difficult, I don’t use a shower chair anymore, brain fog cleared, pill rolling movements stopped and I regained some of my arm swing back. I encourage you and anyone else to join the Facebook group “Parkinson’s Thiamine hcl”. It is as supportive as HealthUnlocked and dedicated to the Thiamine protocol established by a neurologist in Italy. He worked with over 2500 patients and there are hundreds more around the world using this. This is not a cure but at this point a lifelong treatment until a cure is found.