What does having ataxia do to your life?

I appreciate your kind words, and I am glad that what I posted was of value to you. As with you, I have indeed heard the words "Accept it, and learn to live with it." Also: "Just go on with your life, don't concentrate on what you think is keeping you from doing what you want to do." Those last words came from the foot orthopedist who failed to acknowledge that I did indeed have more going on in my ankle than "just tissue damage." Because of him and his "Let's give it another six weeks" comment every time I went back for a followup appointment, my ankle issue were denied an MRI. After leaving him (when he said those ignorant words at my last visit), I had a three month wait to be seen by a highly sought after neurologist in a different medical group. That doctor took one look at my ankle and said that he observed a degree of swelling (a whole year after the fall!) and ordered the MRI that the orthopedist had kept denying. The MRI revealed the evidence that supported all my complaints of pain. Subsequently, he referred me to a foot orthopedist in private practice, and he confirmed what was already diagnosed, gave me injections into both sides of the ankle, and ordered an MRI of the toe bed (which revealed three nasty neuromas). PT for the foot followed, for several months, from October to the following spring, but pain still persisted and even expanded. That's when the neurologist diagnosed Complex Regional Pain Syndrome. There's more to this, but I'll end by saying that it was such a relief to have had doctors who actually believed my pain and sought to HELP rather than deny and be dismissive. Having had so much time transpire without having gotten the appropriate medical attention in the first place by that arrogant foot orthopedist definitely contributed to the intensity of my condition. I have a very hard time trying to deal with that. I may well have had a much different situation right now.

@delia74 your story and mine are almost identical!
Over the last 7 years I have been through several diseases including Vasculitis that have affected my peripheral nerves, and my small arteries.
Two years ago I was diagnosed with Mild Cognitive Impairment. I asked to be tested because I couldn’t think straight. The MRI showed moderate atrophy beyond my age of the cerebellum.
Since then I started exhibiting symptoms of Ataxia. I have double vision, 4 cranial, nerve palsy, my gait is comical, and I tend to lean backwards. So, I use a cane, or walker when I’m out.
Over the past few weeks they decided to follow-up on my brain tests. I had 2 MRIs, an MRA, and an ENG all in one week.
I received a call Thursday from my Neurologist office. They noted dementia in my tests. Not the news I wanted to hear, but I am not surprised.
I am meeting with the doctor in January. Based on my MRIs, (I have seen the reports) I would say that I have
Vascular Dementia. It’s definitely not Alzheimer’s because there is no mention of the tangles etc. in my brain.
I’ve already been taking Namenda for more than 2 years. I don’t know what the course of action is going to be but I’m taking it day by day.

Follow up, January neurologist appointment was done last week.
Dr said my brain has shrunk significantly. The next thing is a PET scan to rule out Alzheimer’s.
He said that the double vision I have is from my brain not reading the signals from my eyes correctly.
I WAS TOLD I CAN NOT DRIVE ANYMORE!! Ouch!
So far that’s the worst of it for me.

SUSAN: I am dividing the rather long response (I had a great deal to share) since it would not go through. The "wheel" just kept spinning, which has happened before. So realize that my response is in two submissions.
I hope you will read both.

Here is the first:
SUSAN: This a reply to your prior post, but as I looked and read this updated post, I decided to include it here. I am so sorry to learn about the brain shrinkage. My husband's MRI indicated a degree of shrinkage as well, but we were told that it was "not significant and it happens with aging." But he had exhibited symptoms that were concerning to me, so I kept after him to speak with his doctors, and his primary and neurologist both concurred on the MRI. Testing by a neuropsychologist followed, and there will be another evaluation within this year also. Meanwhile, I keep a log of concerning behaviors.

I can understand how it must impact on you that you can no longer drive. That is something that I fear can be told to me at some point. However, my double vision has not interfered while upright and definitely not while driving. The double vision comes into play when lying down or leaning back (as when in a comfortable position on the sofa, with head tipped or inclined) while watching TV. When I adjust my head, then the double vision disappears and all is good again. This has been going on 10 years now. Very vexing but the images can be comical as well.
Several neuro-ophthalmologists have said that driving is fine to do since not once has my vision been impaired while driving. My most recent exam was December '23. After bilateral cataract surgery in '20, I only use reading glasses with anything up close (literally cannot read recipes, anything at all which is so annoying). I drive locally, no highways, etc., so reading road signs is not a problem at all and I'm comfortable with that.

SUSAN: HERE IS THE BALANCE OF WHAT WAS TO HAVE BEEN INCLUDED WITH THE OTHER POST

HERE IS WHAT I WROTE IN RESPONSE TO YOUR OTHER POST:

What you have shared has touched me deeply. I am so truly sorry that you are undergoing such an emotional and psychologically charged journey.
I hope that you have someone that you can count on, because you do need support in order to deal with each of the diagnosis. As women, we are always taking care of the needs of people in our lives....but I have often told my husband that I need a WIFE, a caring, loving, attentive woman who can take care of ME on all planes, not just my physical ailments, but also the emotional and psychological. I need someone to just take over when I am paralyzed with pain, worry, anxiety, and fear. As loving a partner as he has been for the 54 years of marriage, he does not always "get it" and so I have become selective over what I'll share, relying on myself more and more, with the consequence of feeling so spent. To be fair, he faces many medical issues as well, including memory, for which he was tested and MRI studies done but thankfully no diagnosis of dementia, etc. thus far. We have three adult children, one who's estranged, and the other two I don't want to burden with all that is happening. So I have no one. I had been in Tele Therapy but stopped back in November. Just didn't feel comfortable sharing so much about myself to a person who is, after all, a stranger. I've always been a very "private person". I did not find the sessions to be helpful.

This week, just as I was hoping that nothing more would be added to my overwhelmingly full proverbial plate, I learned that I have a couple of more medical issues to deal with. One has to do with the ataxia (with me since '14) and how I've been puzzled for a year now on how I sometimes have the sensation that I am tipping BACKWARDS, as in falling but not forward movement, rather it is an uncontrollable sense of my body in BACKWARD motion... You write that you've had this happen to you also.

Yes, I shared this with my primary last spring (at annual physical) but nothing was accomplished other than expressing that "...it does sound odd." Evidently she had no knowledge on this topic, as I've learned is a factor within the general medical community. Since then, my "sensations" have increased in frequency and accompanied by other "sensations" and symptoms. Fast forward from last spring to present month of Jan '24, and the sensation of feeling "heavy brain" (yes, my brain actually feels heavy and "full" within my cranium, as if not enough room for it), along with tipping mostly to the left while attempting to turn, and worst of all the sensation that I am about to fall, as if I have no control over that--- all of this is damn frightening to me. Happens not just while on a firm floor (where I can at least reach out to brace myself from falling by holding onto the kitchen island, other counters, a table, a wall. The scariest has happened while ascending stairs but thankfully I have to climb slowly due to leg injuries (sustained in '21 but not from a fall of my doing, rather that of a store's negligence). So I STOP immediately, drop my head onto my chest, lean into the bannister, and wait for the feeling to pass before progressing up the stairs with trepidation. At the top, I slowly stand onto the hallway floor, moving AWAY from the stairs just in case the sensation should return. DAMN scary way to live, but that is what I've come to do in order to protect myself from harm. We are looking into have a chair lift system installed.

Last week, I made my way slowly (as always) up the stairs from basement (where we installed pantry cabinets many years ago). I held a full bag of egg noodles with right hand. I suddenly felt myself falling BACKWARDS! I quickly tightened my grip on the bannister (being held by left hand) pressing my weight into the bannister and wall, and managed to force myself FORWARD, in an effort to prevent the backward fall...I also used my right hand (the bag of egg noodles fell onto the step but rather the noodles than me!). My heart raced as the sensation passed and I realized just how close I had come to potentially serious harm if indeed I had fallen backwards, from the fifth step of the stairs, down to a hard tiled landing below. I already deal with spinal stenosis, lumbar nerve and disc issues, hip arthritis --- no more!

I share all of this because YOU have expressed the very same sensation of 'FALLING BACKWARD" and YOU ARE NOT IMAGINING IT. Please share this with your neurologist, as will I at my appointment next month.

I've done extensive research and learned that there indeed DOES exist such a condition as BACKWARD FALLING, officially called BACKWARD DISEQULIBRIUM. (Go to one of the reliable sources: ncbi.nim.nih.gov "Backward Disequilibrium in Elderly Subjects".)
I was stunned to find so much material (from reputable sites and also neurological studies) on the issue of "backward falling"...the info is extensive, and is being taken more seriously within the medical community. I have made copies of pertinent, relevant materials that will be brought with me to my upcoming neuro visit. MEANWHILE, I am ever more vigilant with movement within our house that has two sets of stairs. I've taken measures to make our home as safe as possible.

Please take time to read what I learned on the site posted above. It can shed light on what you've discovered from your radiological testing. The info has certainly opened up my eyes (literally and figuratively, since I have had double vision since '14, as well of the other ocular issues that you and I have). While admittedly difficult to absorb and accept (no one wants to learn that there are various contributing factors and the possible diagnosis/prognosis), I feel VALIDATED because NO, I have not imagined this "condition," it definitely HAS BEEN HAPPENING to me. And YOU have not been imagining it either, so please enlighten yourself on the topic so that you can be more informed as you go forward on your present journey. I most definitely comprehend what you have undergone and will be facing.

Yes, I do connect with you, Susan. Por favor, let's keep in touch.
I do believe that we can be of help to each other on so many levels.
As we say in Spanish : Que Dios te bendiga y proteja. ("May God bless and protect you.") 🙏🏽

Iris💝🌺🙏🏽

SUSAN: I evidently messed up horribly and my replies went TO ME!!!
As much as I tried to rectify that, NOTHING worked.

THE BEST THAT CAN BE DONE AT THIS TIME:

Scroll down to where my replies to you are directed as delia74. @delia74

Please let me know if you've read my info...I include info on the FALLING BACKWARD, which you say you've experienced. I have also!

My wife (early seventies at the time) has had backward disequilibrium only since the day the ER diagnosed a golf ball size brain bleed (stroke). If I had it I would not do stairs or drive at all. She has recovered significantly; but still has serious balance issues two years later. PCP seemed to know nothing about the condition. Neurologist didn't respond to my narative about symptoms.

Thank you for sharing about your wife's experience, and I'm so sorry to hear about her stroke.

The BD is not in play when I drive, which is infrequent and only within our town. I'm sitting down while in the car, not involved in any movement such as when walking/standing. I don't much enjoy driving anyway, and hubby does the driving whenever there is reason to venture further from home.

I have not been diagnosed as of yet. I have the app't with the neurologist next month, at which time the backward falling and the incidents will be discussed. He is an outstanding doctor, highly regarded by many within his field. He'll write the script for the brain MRI, and then we'll learn if indeed there have been more lesions since the MRI of '22.

There are several other factors that can enter into a diagnosis of BD that have caught my attention, since I have had demyelination and Transcient Ischic Attacks (on prior studies) but no strokes or heart involvement of any type (thank God!). The traumatic damages to my left ankle/foot/leg from an accident in a store (caused by their negligence) may just play a part. I quote from the NIH government site: "Awkward disequilibrium could also be due to an imbalance between the ankle extensor muscles and the ankle flexor muscles, because of hypertonia of extensor muscles, which could be caused by a peripheral neurological lesion."

Somewhat describes to a T what's been diagnosed with my foot/ankle/leg by the same neurologist that I'll be seeing next month. His final diagnosis was Complex Regional Pain Syndrome, for which I've seen pain management specialists and have done countless physical therapy (presently attending!) in an effort to keep that area from atrophying. Has definitely affected my ability to walk since I have constant burning nerve pain and the joint is indeed "tight" despite attending PT since 2021 AND doing the exercise routines at home. Coupled with the meniscus tear, tendon and nerve damages, and I have indeed had to strategize how to ambulate within daily activities.
I can't ignore stairs within our home or I'd be destined to never go to the first floor where the kitchen and other living areas are located....but hubby has set up a steel shelving unit in the laundry room (off the kitchen) where I've been placing the often-used food items and other needed things. I hold the bannister and take steps one at a time, which is what generally has to be done due to the not-quite-flexible ankle joint, and the unforgiving knee tear. Life has changed for me ever since that awful day in June of '21...But it is what it is, and I strongly advocate for myself, so I should have more answers in a few weeks.

Another aspect cited on the NIH site has to due with "Cortical and subcortical lesions of the central nervous system are the main abnormalities lead to BD." So yes, those pesky brain lesions may just be responsible....we'll see.

Again, I thank you for your post. I hope your wife has been able to recover from her medical condition.🌺

I don’t know whether you have acquired ataxia, idiopathic ataxia or genetic ataxia. Knowing whether you have genetic ataxia would give you descriptors of what might be in store for you. I have idiopathic ataxia. Different ataxia diagnosis = different prognosis

@delia74
Wow! You have been and continue to be going through so much!
Question, you have Ataxia right? I thought I read that. Why do you have it? Did they tell you that there are several causes? I have it because my cerebellum has atrophy.
How has the Ataxia been affecting your life until now? The symptoms are exactly what you have described as far as double vision, and balance issues, and bad coordination.

The falling backwards is new for me. As soon as I mentioned it to my neurologist’s NP he knew immediately that it is being caused by the atrophy in my brain. So, I must use a walker when I’m out of the house. Most importantly, I have to remember to keep my back to it if I stop and stand still.

Now another thing has popped up. My gait is horrible and now when I try to step my right leg forward, it goes forward in a semicircle before my foot goes down. It’s hard to put into words…

It’s getting late and I must go to sleep. I have a sleep disorder that keeps me tired all day. Now I take medicine in the morning so I’m awake all day. But, I go to bed at midnight!

Blessings!