All my previous coping mechanisms with depression were physical now I have to find another way of coping. I thought reading would be more sedentary,I tried a Kindle but my hands wobble so much with intention tremors. I'm stuck.
APREHENSIVE or what
Mental is my problem too Rose. When I had my accident over 20 years ago, in a way my brain protected me, as it wouldn't let me realise, how bad I was. Now I realise more, just living is scary!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Marie Turner said:
All my previous coping mechanisms with depression were physical now I have to find another way of coping. I thought reading would be more sedentary,I tried a Kindle but my hands wobble so much with intention tremors. I'm stuck.
I keep hearing "depression" that could be something else. I'm glad someone else thinks something similar to me, but is it too late?
I didn't think I could indulge in one of my favorite past times and scoot too, but I can. One day, I was out on my mobility scooter, music from my smart phone blaring, when it came to me. Since I was an audiobook addict, I could as easily "risten" to a book as well as play music while I scooted. I could even scoot to a park, sit under a tree and switch from music to a book! Maybe I'm not the brightest crayon in the box, but things come to me eventually. As with music, I have to make certain any audible book content meets the appropriate criteria. It can be like reading out loud, but headphones help, preventing you from disturbing or offending people.
Disclaimer: I never use headphones on a moving Skeeter. It's nice to be read to, but I need to use all my remaining senses for a safe scoot.
My addiction to audiobooks began with the nystagmus (fluttering eyeballs) common in Ataxia. I don't know if SCA causes me to lose visual focus from optic nerve involvement or fatigue, but it does keep me from reading my favorite long books. I confine conventional hard-copy reading to magazines and newspapers. But, now I can relax on either a moving or stationary Skeeter, be read to and not worry about my "dancing" eyes.
Interestingly, audiobooks represent a gain, rather than another loss, from Spinocerebellar Ataxia. Always an avid reader, I've been able to increase my reading volume (more books in the last few years than the last 50), explore different book genres (illuminating history, interesting non–fiction, frivolous crap), and gain some familiarity with authors and their body of work. I'm never alone as I always have a book with me (new friends). I can read and exercise, fold clothes, drive, get stuck in traffic, wait for appointments, etc. Anytime I encounter a potential "time-waster", I turn on an audiobook (waiting rooms, cars, planes, airports) and have become much more patient. I actually get cranky when I have to turn my book off and respond to a question. "Now, don't be rude, Tam," I chide myself. "You made the appointment".
When insomnia strikes at 3 am and I don't want to toss and turn, worry about being awake, or disturb a sleeping husband, I can "plug-in" quietly to an audio device (CD player, IPod, IPhone), in the dark. Either I fall back to sleep or make progress on a book. Usually, I fall asleep before the timer shuts the device off (a sleep timer, single headphone, and low volume protects my hearing). The disadvantage is that the "plugged in" status isn't always obvious to someone wanting to engage you in conversation. Fortunately for me, Earl "plugs-in" as well, so we've learned to ask and not take unresponsive silence personally. Not only does listening to audiobooks with headphones inhibit conversation, it also blocks out sound as well (a mixed blessing). I have visions of Earl being on a trip and an intruder murdering me while I am "plugged in", because I didn't hear him break in. If that were to happen, Earl could always write a mystery–The Case of the Audiobook Murder.
Audible.com has an IPhone App (of course there's an app for that) which lets me download books to my phone and treat it like an IPod. I keep a book or two loaded on it for those times I leave my IPod at home. Although I have both an IPod and an online subscription, audiobooks are expensive. I go the online library and check out as many downloadable books as possible. It's free and it keeps my addiction cost under control. As mentioned in previous posts, the local library is a common destination, so I can combine two enjoyable activities–"ristening" and scooting.
The lesson: There is the occasional benefit that comes from adversity.
schumant said:
I didn't think I could indulge in one of my favorite past times and scoot too, but I can. One day, I was out on my mobility scooter, music from my smart phone blaring, when it came to me. Since I was an audiobook addict, I could as easily "risten" to a book as well as play music while I scooted. I could even scoot to a park, sit under a tree and switch from music to a book! Maybe I'm not the brightest crayon in the box, but things come to me eventually. As with music, I have to make certain any audible book content meets the appropriate criteria. It can be like reading out loud, but headphones help, preventing you from disturbing or offending people.
Disclaimer: I never use headphones on a moving Skeeter. It's nice to be read to, but I need to use all my remaining senses for a safe scoot.
My addiction to audiobooks began with the nystagmus (fluttering eyeballs) common in Ataxia. I don't know if SCA causes me to lose visual focus from optic nerve involvement or fatigue, but it does keep me from reading my favorite long books. I confine conventional hard-copy reading to magazines and newspapers. But, now I can relax on either a moving or stationary Skeeter, be read to and not worry about my "dancing" eyes.
Interestingly, audiobooks represent a gain, rather than another loss, from Spinocerebellar Ataxia. Always an avid reader, I've been able to increase my reading volume (more books in the last few years than the last 50), explore different book genres (illuminating history, interesting non–fiction, frivolous crap), and gain some familiarity with authors and their body of work. I'm never alone as I always have a book with me (new friends). I can read and exercise, fold clothes, drive, get stuck in traffic, wait for appointments, etc. Anytime I encounter a potential "time-waster", I turn on an audiobook (waiting rooms, cars, planes, airports) and have become much more patient. I actually get cranky when I have to turn my book off and respond to a question. "Now, don't be rude, Tam," I chide myself. "You made the appointment".
When insomnia strikes at 3 am and I don't want to toss and turn, worry about being awake, or disturb a sleeping husband, I can "plug-in" quietly to an audio device (CD player, IPod, IPhone), in the dark. Either I fall back to sleep or make progress on a book. Usually, I fall asleep before the timer shuts the device off (a sleep timer, single headphone, and low volume protects my hearing). The disadvantage is that the "plugged in" status isn't always obvious to someone wanting to engage you in conversation. Fortunately for me, Earl "plugs-in" as well, so we've learned to ask and not take unresponsive silence personally. Not only does listening to audiobooks with headphones inhibit conversation, it also blocks out sound as well (a mixed blessing). I have visions of Earl being on a trip and an intruder murdering me while I am "plugged in", because I didn't hear him break in. If that were to happen, Earl could always write a mystery–The Case of the Audiobook Murder.
Audible.com has an IPhone App (of course there's an app for that) which lets me download books to my phone and treat it like an IPod. I keep a book or two loaded on it for those times I leave my IPod at home. Although I have both an IPod and an online subscription, audiobooks are expensive. I go the online library and check out as many downloadable books as possible. It's free and it keeps my addiction cost under control. As mentioned in previous posts, the local library is a common destination, so I can combine two enjoyable activities–"ristening" and scooting.
The lesson: There is the occasional benefit that comes from adversity.
I like scootering too in the UK and found it valuable for mental health.However I need all my remaining unimpaired senses for listening to cars and things that creep up behind me.
I like reading and listening to music but I am keeping those things in reserve when I finally accept my incapacities. At the moment iie this year I have difficulty focussing and even lovely landscapes whizz past.
I need to stop more and just look.
Interesting info Shumant! Thanks for sharing...;o)
Todays Cross Party Group on Neurological conditions hosted by Rebecca Evans AM ( Welsh Assembly member)
was to launch the West Wales Neurological Alliance report on Neuropsycology in Hywel Dda Health board (West Wales Health board)
(more photos of event soon)
doc. attached
276-Reportonpsychologicalneedsv0.4.doc (683 KB)
Thanks for posting Alan
Best wishes
Alan Thomas said:
Todays Cross Party Group on Neurological conditions hosted by Rebecca Evans AM ( Welsh Assembly member)
was to launch the West Wales Neurological Alliance report on Neuropsycology in Hywel Dda Health board (West Wales Health board)
(more photos of event soon)
doc. attached
THANKS FOR SHARING, ALAN! ;o)
There is so much lacking in this particular area of care, it needs to be addressed.
True :(
Beryl Park said:
There is so much lacking in this particular area of care, it needs to be addressed.
This is so true Alan. Thanks for posting it as it has highlighted the need for support with mental health.
I went for psychological counselling. It was a stroke group but although very well run and helpful for those who had a stroke I soon realised I was in the wrong place.
My needs were Ataxia based.I did not need jollying along or exercises to rehablilitate limbs.I needed support in how to get the best out of life with a degenerative disease.Things would get physically worse not better and I had been particularly mobile.In fact all my hobbies I had developed over the years had to be changed.There seemed to be so many psychologicaladaptations that I needed help.However hard I looked or asked no one had even heard of Cerebellar Ataxia let alone the psychological impact.This report certainly highlights the need and I am glad it being recognosed and addressed.
There seem to be all sorts of Ataxias and lots of different personalities on this website.
For me tremors have restricted some hobbies.
Eye focus has had an impact on safe road use even with a big mobility scooter.
I drop things and can't look after myself as I could.This has led to loss of dignity and poor self image.Is it any wonder some of us are struggling with anxiety and depression.
I need help changing from the life of mobility to a more sedentary life.
I need mental not just physical help.
Am I alone with these feelings or do others feel they need some help coping with the mental impact of Ataxia.
I think I need a whole personality transplant to go with a new undamaged brain.If I have to keep adapting there won't be any me left.Any advice??I am not angry or bitter just hopeless and resigned.
Well said. You said exactly how I feel - totally lost and alone
Half of you feels like dieing, but then a voice says NO. But how?
Marie Turner said:
This is so true Alan. Thanks for posting it as it has highlighted the need for support with mental health.
I went for psychological counselling. It was a stroke group but although very well run and helpful for those who had a stroke I soon realised I was in the wrong place.
My needs were Ataxia based.I did not need jollying along or exercises to rehablilitate limbs.I needed support in how to get the best out of life with a degenerative disease.Things would get physically worse not better and I had been particularly mobile.In fact all my hobbies I had developed over the years had to be changed.There seemed to be so many psychologicaladaptations that I needed help.However hard I looked or asked no one had even heard of Cerebellar Ataxia let alone the psychological impact.This report certainly highlights the need and I am glad it being recognosed and addressed.
There seem to be all sorts of Ataxias and lots of different personalities on this website.
For me tremors have restricted some hobbies.
Eye focus has had an impact on safe road use even with a big mobility scooter.
I drop things and can't look after myself as I could.This has led to loss of dignity and poor self image.Is it any wonder some of us are struggling with anxiety and depression.
I need help changing from the life of mobility to a more sedentary life.
I need mental not just physical help.
Am I alone with these feelings or do others feel they need some help coping with the mental impact of Ataxia.
I think I need a whole personality transplant to go with a new undamaged brain.If I have to keep adapting there won't be any me left.Any advice??I am not angry or bitter just hopeless and resigned.
I know that depression indeed has to be placed high on the list of Ataxia and it`s connection with so-called "progressive".
This "progressive" stance held high by the medical brigade is exactly what Dr. Tom Clouse has been fighting against - see: walking with ataxia (website)
Isolation/loneliness are inherent of depression for some Ataxia sufferers, and that being the case, the "progressive" state is guaranteed a sure winner. If that were taken out of the equation, so equally would the "progressive" opinion of the "experts", thus rendering them redundant.
Isolation/loneliness/depression are a grand topic today, with depression an ever more lucrative advantage for big Pharma and it`s connections, too numerous to chalk-up.
Thank you everyone for your comments. I wrote about unanswered questions, uncertainty and confusion that can affect us psychologically. Here is another example. I had an appointment with my Eye Specialist a few days ago. They made all the different tests available including the ishihara test for colour vision. I failed the Ishihara test on the second page which means that I am colour blind. When I met the Consultant I explained to her all the problems that I am having including my night blindness and colour blindness. I was expecting her to be sympathetic and tell me that those are normal symptoms for some people who suffer from ataxia. On the contrary she did not seem to believe me. I asked her why my night vision and colour vision is getting worst. She said some people's night vision get worse with age and that I probably suffered from colour vision since childhood. Unfortunately I could not swear..and I never do. For God's sake its my life and my vision. I know better what I can or cannot see. I never suffered from colour vision until my ataxia started. I am an artist and my first job was as an art teacher. I have always had a good vision at night. Everything went wrong with my ataxia. I even have problems with my day vision and my optician had to put a yellow tint in my glasses to help me. All those little things get you more confused and you finally become more depressed.
Here is an online test for those who want to check their colour vision.
I am also struggling like you with some of the same concerns. Depression is a complicated thing. I have learned that when you reach a point of thinking about hurting yourself it is time to get some type of help. A counselor or good friend that will listen to your concerns so that you can vent sometimes helps. I personally have had a difficult time with depression especially since receiving this ataxia diagnosis. I recognized the symptoms and made the decision to take medication for a while and found a source for free counseling to vent some of my concerns. This has helped a lot. There is a good book, “Battlefield of the Mind” by Joyce Meyers. This book might help.(If your vision is giving you trouble maybe a spouse of friend could read it to you or sometimes the library has books on tape.) I think since there is so little information out there for ataxia it sometimes makes one wonder - is it me or this ataxia. I am thankful for this website so that we can network with others that understand what we are going through.
I think since there is so little information out there for ataxia it sometimes makes one wonder - is it me or this ataxia. I am thankful for this website so that we can network with others that understand what we are going through.
You are on the mark in that statement PG and the this wonderful platform. For if anything can help us it`s right here, and not the tide of medical ignorance on the loose among the "expert" league.
PG said:
I am also struggling like you with some of the same concerns. Depression is a complicated thing. I have learned that when you reach a point of thinking about hurting yourself it is time to get some type of help. A counselor or good friend that will listen to your concerns so that you can vent sometimes helps. I personally have had a difficult time with depression especially since receiving this ataxia diagnosis. I recognized the symptoms and made the decision to take medication for a while and found a source for free counseling to vent some of my concerns. This has helped a lot. There is a good book, “Battlefield of the Mind” by Joyce Meyers. This book might help.(If your vision is giving you trouble maybe a spouse of friend could read it to you or sometimes the library has books on tape.) I think since there is so little information out there for ataxia it sometimes makes one wonder - is it me or this ataxia. I am thankful for this website so that we can network with others that understand what we are going through.
I COULDN'T HAVE PUT IT BETTER MYSELF
Philip Toal said:
I think since there is so little information out there for ataxia it sometimes makes one wonder - is it me or this ataxia. I am thankful for this website so that we can network with others that understand what we are going through.
You are on the mark in that statement PG and the this wonderful platform. For if anything can help us it`s right here, and not the tide of medical ignorance on the loose among the "expert" league.
PG said:I am also struggling like you with some of the same concerns. Depression is a complicated thing. I have learned that when you reach a point of thinking about hurting yourself it is time to get some type of help. A counselor or good friend that will listen to your concerns so that you can vent sometimes helps. I personally have had a difficult time with depression especially since receiving this ataxia diagnosis. I recognized the symptoms and made the decision to take medication for a while and found a source for free counseling to vent some of my concerns. This has helped a lot. There is a good book, “Battlefield of the Mind” by Joyce Meyers. This book might help.(If your vision is giving you trouble maybe a spouse of friend could read it to you or sometimes the library has books on tape.) I think since there is so little information out there for ataxia it sometimes makes one wonder - is it me or this ataxia. I am thankful for this website so that we can network with others that understand what we are going through.