I have no friends and my family has ALOT going on I can’t let them know that i am having a rough time. No I am alone. I have always been alone just now I have a disease. That’s why support groups are a good idea. But I have to stick to online because being in public how I am now it’s a scary thought.
The advantage of an Ataxia support group is that most every one will have problems with gait, speech, and vision. Nobody will judge you. It is also a safe place where you can make friends.
One other thing I wanted to suggest to you is exercise. I hate exercise, but it does make feel better. Of course, you will need to figure out whatis safe. I ride an exercise bike since I can do it seated and will not fall. I also take walks holding onto my husband for dear life. I even enjoy the walks despite my aversion to exercise.
These day’s (and I blame ataxia) I’m far more outspoken. But, also due to ‘side effects of the condition’ ( it takes me longer to mull things over ) and therefore my responses are likely (and hopefully) to be well thought through In the past I’ve never had an ‘encyclopaedia of expletives’ to draw on in time of need But thanks to my daughter I can now call on some very ‘satisfying’ acronyms
Seriously though, I totally understand the urge to speak without thinking, sometimes I surprise myself …’did I actually say that’ What really stops me in my tracks is, when somebody takes something the wrong way… you know… misunderstands and stops me mid sentence because they haven’t given me enough time to fully think through what I want to say Since being the ‘lucky recipient’ of a Neurological condition my personality has undergone a massive makeover xB
I’m inclined to shy away from new experiences myself, these days it’s probably due to ataxia symptoms, and it’s true to say I’ve never actually been outgoing by nature. But, it’s a good start interacting online It keeps your mind ticking over xB
“…my personality has undergone a massive makeover…” Beryl, I could try to use this excuse, but some would say I’m naturally an a-hole lol and my condition hasn’t improved that any. At times I wish it had reared his ugly head earlier as I know of some people who really needed to be told the truth directly, but at the time I was just TOO nice to tell them lol
I know what you mean xB
Merl, you seem to have replied but I don’t see anything xB
I feel your pain…I was very recently diagnose with late onset Cerebellar ataxia. 8 years ago I had a 4cm abscess on my left frontal lobe which ruptured leading to a very nasty case of bacterial meningitis. I basically walked around for 6 days with my brain marinating in purulent bacteria! We went to an ER, a walk in clinic (who referred me to an ophthalmologist day. My symptoms were a sudden onset unbelievably bad headache, a droopy right eye, and serious cognitive issues at all appts. The only reading I’m alive is that after I went to see the opthamalogist I went to get my records from my ortho surgeon and as soon as he saw me I was fast tracked through the ER.
Long story short, it has taken me 8 YEARS to get a diagnosis!!! I also have several “idiopathic” lesions all over my brain but I suppose my cerebellum is just deteriorating .
I do sometimes feel the same as you because for years I was treated like a hypochondriac drug seeker so now my poor brain is trying to process this as A REAL THING!
Yeah, it is all “in our minds” because it’s our brains that are doing things we have no control over. I’m keep searching for an article that says this disease isn’t ALWAYS progressive but so far have come up with zilch.,
I really like your comment that our problems are all in our minds because our brains don’t work right, I have to remember that!
Linda, my husband kept telling me ‘it’s all in your head, pull yourself together’. Who needs Neurologists xB
That really sucks to have the person you most want to be understanding not be supportive like that.
Well, in his defence. I’d had an initial diagnosis of Epilepsy, and as far as he was concerned, I just had to come to terms with it. Although how you could attribute eye problems to that I don’t know. And, I was going through menopause. Some men think all erratic behaviour and weird symptoms can be attributed to that
I recall my Mother having a terrible time with my Dad, he was really ‘old school’ She wasn’t formally diagnosed with ataxia, but because of an aneurism she’d had very similar symptoms to us, including the eye problems. He’d often accuse her of ‘playing on the symptoms’ because they seemed Episodic:confused:
These days my Husband knows where he stands if he feels inclined to make a thoughtless remark. He’s still not fully up to speed as far as knowledge of ataxia is concerned, but he can tell when I’m having a bad day and can be surprisingly caring xB
Possibility of idiopathic late onset cerebellar ataxia
A glance at the literature suggests idiopathic late cerebellar onset ataxia, cca variant: *“The clinical presentations of ILOCA (CCA) are characterized by late ages at onset with slow progression and pure cerebellar ataxia with markedly ataxic gait with relative preservation of coordination in the upper limbs.” https://link.springer.com/referenceworkentry/10.1007%2F978-94-■■■■-8_98#page-1
Grrrrrrrrrrrrrrrrrr! Im sorry your husband makes little of Ataxia Beryl, that sucks. …
This has been unsaid but not unsaid if you know what I mean. It’s hard enough just coping with our illness but what I think is harder is having healthy folks making little of our condition. Although I can understand their thoughts. They can only know what they know and experience. Only someone who experiences what we experience knows.
I don’t know what the answer is to that. As for me, I just shake my head in disbelief and hope that the other person is wise enough to know.
He’s a whole lot better than he used to be Linda, I have to give him credit for that xB
Well Said! Thank you…
Hi there I don’t know you … but if it is like what I’m experiencing no no no it is not in your head!! my symptoms began in 2016. I was living in Key West I am an R.N. but switched to a lisenced Massage Therapist… because I did not believe in “Western” medicine it is basically poison… I was living a totally healthy life riding my bike…yoga and giving and receiving massages… I’m still undiagnosed… was thankfully approved for disability … my first neurologist stated to me when I find out what I have to call her and let her know… she was amazing and knew she had no idea??? others were nightmares… one neurologist stated to me " oh you don’t need that cane" I wanted to hit him with it… LOl because a year later a cane no longer works I am now using a rolator… stay positive and don’t let anyone make you think it is in your head and don’t be afraid to question or find a new Doctor… they are not God’s and a good one will admit defeat and refer you to someone they think might have an idea…
Hi welcome Quite a few of us have been frustrated (to say the least) by Neurologists. But, they are not all the same, some of them actually do know their stuff and recognise Ataxia when they see it. I was given the ‘brush off’ myself by my family doctor, this went on for many years until I had falls and he was forced to refer me elsewhere. We all recognise something is amiss when symptoms start, but getting a medical professional to take notice is something else entirely xB
Absolutely!! like I said my first neurologist just shook her head and instead of dropping the ball… she admitted she does not know… and to let her know when how this started? or cause? To please let her know when I know… this was in Key West Fl. I had to move and start over because I could know longer afford to live there… I am so glad I found this site… I am not alone, I feel a sense of peace for the first time in a long time!! feeling blessed…