Newly diagnosed

Seems different for everyone...but similar!!

Not sure if I'm  posting this in the right place but nevermind.   Saw neurologist originally in December 2015 as couldn't walk heel to toe and had noticed lots of other mild but strange symptoms...missing out the middle of words when writing, becoming a little too  friendly with walls etc...!!  I am just turned 50.  No speech problems at the moment.  Seems mild but frightened it could all change very suddenly.   Is there anything at all I can do or is it just literally a time bomb?

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  • Sorry everyone I seem to have already posted and had replies.  Just realised!  Sorry😁

  • Dear Jillj

    You can help yourself by ignoring it (is it ataxia or you dont have a diagnosis yet?) as much as you can, talking, writing or typing  (just in case)and trying to stay physically fit. Don't think about it all day and be brave, as Brits can be. You can do this. Yes you can! Good luck N

  • Yes, I have been diagnosed with Idiopathic Late Onset Ataxia.  I also have a frozen shoulder at the moment, so not completely sure where to attribute the symptoms.  However unstable gait, lump in throat, difficulty writing are definitely all ataxic problems.  Terrified now of going down stairs if there is no railing to hold on to.  Don't seem to really need to hang on, just the reassurance of 'something there' I guess.  Sadly had garden lanscaped a couple of years ago, with three steps down to a lower level, and I can't go down them now.  Just stand at the top and look.  At a friend's first floor flat, I recently froze at the top of her stairs, as the rail only starts a few steps down, and I literally felt I couldn't take those steps without something to hold onto.  In the end, she walked down in front of me.  Felt so stupid and literally cried with frustration that my brain just wouldn't allow me to take those few steps.  Thanks for your good luck message.  Whilst I am sitting down I feel I could conquer the world, but when I get up and start moving around, I guess that's when reality hits.  I am very aware now, that things seem to take more concentration than they did before, so feel quite tired, even when I seemingly haven't done much.  

  • Steps and street curbs and rocky gardens are the bane of my existence and I have given up many invitations because of them.

    I have literally taught myself to take the escalator up as well as "people movers."  Though getting off these devices requires huge concentration

    Down escalators? Well, I can do it if someone is directly in front of me.  Force of will is a factor here.

    Try to tackle the garden issue by either installing a bannister (easy) or practicing on the banner less stairs until you can do it right. Maybe go down w your butt. This might make you less afraid of them.  Or, perhaps a PT would come over. The practice never ends. Ending will bring on the problem again. At least, this is what  I have discovered.

    Tomorrow, I am flying to NYC, my hometown. I dread the trip.

    My husband, on the flight going, wont let me use a wheelchair

    or any device . As I have said before, his view on illness is quite simple and snobbish.

    If you don't have some vile cancer or heart failure or a stroke, there is nothing wrong w u.

    The second reason I dread this trip is that I have to visit with my parents, who are 94 (he's  chirpy) and 92 (she is more restrained) and detest canes or anything deemed "old" to them. 

    The good thing about this trip is that I will c a NYC PT  who, hopefully , will fit  me for a weighted vest. Good luck again!(;  N

  • Dear Neta,   Sorry that you dread the trip to NYC and the difficulties that you will face, namely by your husband and family, not understanding that you have a 'real' condition.  I used to be with an Audiologist, who had odd thoughts about people who wear hearing aids.. and had the position to enforce his thoughts on me as a patient, when he prescribed hearing aids.  I remember the frustration and helplessness that I felt, when I should have had better support from him and was looking for help.  He was like your family... and it was to his wife he also wouldn't prescribe hearing aids to "as there was nothing wrong" with her.  (I don't understand it!)  Your parents are very fortunate to reach their ages without needing any "old" stuff...  You must be a very resourceful, forgiving person to write without any rancour, but it would be only human to despair... is that too strong a word?   All the very best for the PT who will give you the support that you need and give you more than a weighted vest!!  (A HUG from me.)

  • Dear PGee.

    Thanks for your kind words. Well, here I am in NYC.

    Everyone is behaving as expected. My parents, less my mother who is quite shrewd, observant and clever, look at me (my departure was rather clumsy) with horror. I have no idea what they are thinking, They wont address the issue but will do things silently like insist I take a cab home and on their dime and fret "who will help you?"when I arrive.

    Husband......he is in total la=la land. Total... or just doesn't care and is keen to do his thing--whatever that may be. For tonight, he bought tickets for me. him and his daughter to a show. Im already worrying how I will get into my seat etc. His approach, if this is one. is to just ignore, ignore, ignore.....

    The PT whom I like did arrive last night and he yelled at me to exercise and do the right thing--which in my case is walk with a cane or stick. He did confirm that I seem more wooden (my words), I am a bit confused. When is PT no longer effective? I mean the illness does kick in at some point, right?

    Its all odd----this CA. I mean,  I look young, attractive and have no real pain and yet there is this issue.

    Hearing Aids...I know that both my dad and mother  in law (86yrs.) have avoided getting hearing aids-- and they each need it and can afford it--- Its very odd. They are each keen not to "look" old. Maybe they wrongly see h.a's as a step to The End. I don't know...

    My brother, age 62, also showed up one night.

    He was very empathetic but too much so. "You r extremely ill. My heart breaks for you. Your husband is horrible to you.." Also the wrong approach, I think. LN

  • Dear Neta, 

    I do not know the answers to your questions to answer, unfortunately.  

    Apart from adding to your stress, the PT was shouting at the wrong person I think!  That aside you need to enjoy as much as possible catching up with your family in the next few weeks... and perhaps ask Ataxia UK how they could help you by having another person to talk to your husband, on your return, on how what is (or not) happening is not helping you.  The venue where you are going to ought to be able to facilitate your needs.. maybe even to enable you also to enjoy.     Take care of those stairs, use the rails!  

  • It's funny, maybe not, but total strangers are nice to me. For example. upon descending a taxi, an Afro American porter type from nowhere, thinking I might fall,  ran to my aide only to be chided by my hubby; at the show  (The King and I) a man with a bowtie, not employed by the theater, escorted me to my seat and at intermission a bunch of ladies at the long loo queue, insisted I go first. This is the way in the USA if one seems to have some disability. I think. I found this sort of behavior in the UK too, Moral giants, I call them, Never know where they are. I will take your advice to heart. And thanks btw. N

  • Jill Ask your GP for help from occupational therapists etc. Check out this site for more info especially anything you can give to your GP (They are not all ways up to date on this illness) Also ask to be referred too one of the speciallist Ataxia clinics (if in UK).

    I have the same problems with stairs and can only go down one at a time with support or at home sitting down on the stairs. Not pretty but better than falling.

    Good luck remember you are not alone

    Colin

  • Thank you for your encouragement.  Feel very stupid when it comes to stairs, which seem such a simple thing.  I also find that I am nervous, just thinking about the possibilities of what I might have to do, for example, if I go shopping, I am concerned about escalators, and over thinking things in my head, where is there a lift etc?  At the moment I feel that I am probably limiting my activities because of my concerns, and need to find a way of incorporating my new limitations into a normal life.  I have just called my neurologist's secretary to check who should be sorting out appointments with physio and occupational therapists, and understand it is my GP, so will be chasing them...thanks for your response.

  • Oh thank goodness that it is not just me having problems going downstairs and I definitely cannot go down an escalator......I am too not to bad .. My speech is slightly slurred but I am having neuro physio and speech therapy.....I have got progressive cel leveller ataxia... But hopefully with this help I can delay the progression.

  • Hi Jill😊

    My experience has been much the same as yours, I've coped with these challenging 'symptoms' since the early 1990s, and I'm still here to tell the tale🙂 I'm 65 now.

    I only managed to get diagnosed with Idiopathic in 2011, it took another 4yrs to find out I had a link with a specific type, SCAR8.  My parents had both been carriers of a mutant gene, this type is Recessive.

    You're right we are all the same, but different🙂  Some people have to cope more with physically disabling symptoms, others find emotional and cognitive issues more challenging.  I have a bit of both🙂

    For me, the beginning of it all had me in a complete turmoil, I was aware that weird things were happening but I had no help at all from my GP.   In 2011, before I had an MRI showing Cerebellar Atrophy, a doctor from Falls and Syncopy asked if I would describe my symptoms to a group of GPs.  These doctors hadn't a clue of what I was talking about, it was embarrassing.  There was very little interest, they actually looked bored, and at the end one of them patted my shoulder and said 'you poor thing'.

    But, I researched as much as I could, tried not to let my imagination run away with me, and rose above all that negativity😊

    Our garden is quite large and landscaped.  It's only been the past few years that it's become a chore rather than a pleasure to look after🙂

    With ataxia, the most important thing to bear in mind is keep yourself safe.  If certain situations make you anxious, take things slowly, try to find alternative ways of tackling the problem🙂

    Look on ataxia.org.uk and connect with your nearest support group😊xBeryl

  • Hi Beryl, good to hear from you.  Just phoned my GP because my neurologist wrote to them on 15th March asking for physio referral.  I found out today that it is self-referral, wish they had told me then!!  I have made an appointment, the earliest available, for 19th May.  Now wondering if I can do it myself, or go private as 19th May seem a long time to wait for, essentially, some exercises.  Thought I would look on YouTube, but a bit frightening, 'cause all the films on their feature people who are a lot worse than me at the moment.

  • OK this is purely my view.  Some very good advice though. My husband and I took about a year to come to terms with the news so let yourself get angry.  Also ataxia comes in phases and what can be a problem one day is fine the next!? Also varies a lot in family members affected.

    Exercise and stay active and strong for as long as you can. Stay safe though. Use a walking pole to keep as upright as you can and then 2 (fully extended and hold shaft along length to adapt to ground). I am on a walker in the house now (the next stage) but try not to lean on it too much.  If you have family that want to take you out be brave and use a wheelchair so you see much more and do not slow the family down too much.  Accept you will get comments and TRY to harden yourself to them, people just do not understand!

    Stay safe on stairs but my neurophsio says they are good for me so I have 2 rails (built house and knew ataxia coming so fitted extra stuff and had wider flat doorways, occupational therapist will fit extra one cos they did for my Dad). I go up normally but holding on tightly.  2 from top I get on floor and use the doorway and post to help me up (not very elegant but the family soon got used to it and I am safe). Coming down I always go backwards and hold on tightly to both rails.

    Hope this helps a bit and good luck : )

  • Oh forgot lifts better than escalators that terrify me!

  • Dear JillJ, I was diagnosed with Sporadic Crebellar Ataxia (unknown cause, symptoms 24/7) twelve years ago, but had very minor symptoms starting about eight years before diagnosis. Started using a cane (stick) about five years ago due to a severe fall where I hurt my back. Researching indoor lightweight rollators now, as over the years I've taken falls in my home when not using cane, some where I hurt myself. Having a harder time with stairs (even with a handrail) and use elevator (lift) whenever possible. I'm 62 years young now and recently had blood taken to be sent out for genetic "genome" testing, as my neurologist suspects my ataxia is recessively hereditary (still waiting for results). Continue to exercise (safely, of course) and eat as healthy as possible. My best to you...,;o)

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