Multiple Disabilities

[Crystal11]

Hello everyone!
I thought I would ask if anyone else out there has epilepsy as well as another disability/condition? I am blind and hard of hearing and have atrial tachycardia and complex partial seizures. My twin sister also is disabled and has similar conditions but we both vary in degree of them all. I was born three months early and had a lot of central nervous system insults with many surgeries for various things such as PDA/hole in my heart and corrective surgeries for my eyes/ears.

I cope by composing music, being artistic to my best ability, loving my guide dog Umbro (my guardian/white lab in the photo) hehe.

Just was wondering if any of you out there also deal with other disabilities or conditions besides epilepsy and how does it make you feel in general? How do you cope?

Take care everyone!
-CM

 

[epileric]

I was diagnosed with ADD but I can't help but wonder if it's just the side-effects of my medication (tegretol)

 

[skillefer]

Hi! Let's see...I'm hard of hearing (hearing aids in both ears) which occurred over night on May 1st of 2008. I am also hypoglycemic, and have an underactive thyroid, as well as having epilepsy. Of the 4 conditions, I actually find being hard of hearing the hardest to deal with. I used to love music. But now, I can't hear it clearly...which is depressing. That, and constantly asking people to repeat themselves, and knowing that I miss out on conversations is really really hard. The rest of the conditions are cakewalk to deal with.

 

[Crystal11]

Hello Skillefer- Yeah my twin and I are hard of hearing and use hearing aids and sometimes use an FM/auditory trainer device with DAI cables to hear music- our whole studio is modified for a blind and hard of hearing musician. My hearing aids are powered hearing aids and have a lot of bass on them which helps in music but I've only been able to hear mid-range noises/notes on a piano and not the high/low ranges which is frustrating. We also use tactile sign language for deaf-blind when we are unable to wear our hearing aids or are sick with infection in our ears etc. Sometimes when my vision is better I can see signs up close, my interpreters were specialy trained in signing to deaf-blind students at my college- which helped a lot since most of my instructors I could not hear. Frustrating a lot! Communication is such a big part of our everyday routins. Goines shopping is difficult on two levels, the seeing and hearing part of it. Some days are better than others though and we do the best we can with what we have left. I have 80% hearing loss in both ears which is at severe/profound level and my twin has 70% in one ear and 60% in the other- but hearing aids do help quite a bit. But kinda is hard to think about how hearing aids are the only thing keeping us in the "hearing world".

Thanks for sharing you all!
Take care and be safe,
-CM and her guide, Umbro.

 

[ObjeXioN]

I have ADD and it seems that both my ADD and TLE complicate each other.

 

[brain]

I was born with mitochondrial which is
progressive; neurological (which includes
epilepsy, hearing loss, visual, etc) and
cardiology. I also suffer from several
oncology problems, with the last two
being benign, and the current issue
is hopefully being benign and not
cancerous. Had also deformities, much
of it was corrected but some of it is still
quite visible.

The progression is very destructive, eventually
it will take my life. My family and I as well as
my Physicians - we are all aware of this; and
as for me ---> I am in total peace and not in
a frantic or in a panic. I've known about this
for decades, for all of this had been expected.
It was a matter of WHEN the last phase (or
stage) which everything would accelerate to
destruction would take place; and apparently
it began in late 1990s and picked up the speed
in mid 2000s and been spiraling downhill since.

People wonder how in the world is it possible
for me to continue on forward in such a dire
state that I am in ....

That is because I do not wallow in where I am,
but rather --- what can I do for you? I don't
focus on myself or the issues I have; but rather
continuing on to help others so that they may
have a brighter future and a better chance than
I do. I understand and relate to what everyone
is going through; and people cannot comprehend
all of this for they do not realize so much about
my own background and thus, I come across to
many as a "know-it-all"; when the reality is far
the opposite. I've been through it all as it's been
said, "hell and back" - far too many times that
I do not even want to count.

Just keep pressing forward and never-ever look
back - for looking back will only hold you down;
but rather - look at now and tomorrow - what
can you do about it? What can you do for others?

There are two powerful poems I have written:
One is a metaphor and the other being
illustrative poetry:


STORMS OF EPILEPSY

Sharon - 11/24/2008

Rushing, mighty winds
Splitting towering masts
Over the rudder bends
Nary have the waves blasted!

Shattering the billows in its wings
Mighty force it sustains
Tossing back and forth, it brings
'Tis storm if ever refrains!

Then comes the silver lining
Shipwrecked completely on the shore
Water logged and wearied binding
Recuperate, rebuild, and sail once more!

Epilepsy is so much similar
Sadly, one must report!
Repetitiously; all too familiar
Enduring it all, without any resort!

For true Admirals are they
Without navigation, radars, or charts
Endurance through it all night or day
Knowing not what lies before them imparts!


Would you kindly please hold my hand?

Sharon - 11/29/2008

Would you kindly please hold my hand?
While I endure throughout this life's land
Untamed, wild and without any control
That has beaten down my trodden soul
Wilderness, like no man has gone before
Yet, I wander through this more and more!

Yearning for some peace, all I ask is for your hand!
Be by my side, while I walk through this desert sand
Fiery heat, and parched for water, I thirst!
Sore and aching muscles borne, it all came first
Just like a lost wanderer, I pressed on just as a fore
Moreover, onward I walk, more and more!

Would you please be so kind, gently take me by the hand?
Lead me and guide me, so loneliness would not take its stand
Here I am alone, all wearied and without understanding
Knowing not what lies ahead that all withstanding
Epilepsy, is loathe upon, right down to the very core
In addition, I must carry on, more and more!

 

[dfwtexas]

Ok, I was about to post, but had to compose myself after reading those moving poems by Sharon. :clap: So beautiful and well done.

I had trauma injury to my left arm. Freak accident while walking my dog in may, 29 2006! Had double compound fractures and my arm was ripped open on both sides from wrist to elbow. In the beginning, everyone knew I would need multiple surgeries, but felt it could all be repaired. But because my fall happened in the yard, microisms, dirt, etc did damage that started multiple infections in my arm. I have had 10 surgeries, spent 30 days in hyperic chamber, had IV antibotics via port( pumping me 24/7) for 2 years. My arm is obviously deformed in looks, but I have 20% use of it. I also found out I have oestroposis, which accounts for the seriousiness of the fall. (I fell again during my recovery and broke my shoulder bone too) Trauma surgeon worries about my seizures changing and me reinjurying the bad arm or breaking more bones.

 

[Dutch mom]

My 9-year old son has braindamage as a result of non ketonic hypoglycaema after birth and therefore has complex multiple disabilities, mentally/cognitive and physical. He has CVI (cortical vision impairment), has sensory problems, is spastic in his hands and suffers from the Lennox Gastaut syndrome (a severe child epilepsy syndrome.) He can't walk or talk. He is and will be 100% dependent on others.
Our house is tranformed into a special needs carecenter where several caregivers (besides us, his parents) work.
But he is a wonderfull, beloved, happy child and we got used to it all.

 

[Cint]

Along with epilepsy, I also have Type 1 Diabetes, so have to give myself insulin shots every day, am hypothyroid and suffer from bi-polar disorder, and take meds for those conditions as well. The 1st TC seizure I had was on my way out of the shower and I suffered 2nd degree burns on my arm and back as a result. Visible ugly burn scars on my right arm. I've had a left temporal lobectomy that didn't do any good :bigmouth:, made my memory worse and made me suffer from aphasia, and have had two VNS surgeries that have helped reduce seizures.

Cindy

 

[Cint]

BTW, I cope by writing poetry, listening to classical music, walking, exercising, meditating, reading and visiting with upbeat people.

 

[Crazy Monkey]

Brain - You always have a way of making me stop and think, I have read your poems 4 times now and no doubt I will read them again before I leave this thread.

Even though I have absence seizures and a couple of other medical conditions, I do not really count these as a disability.

 

[Crystal11]

Dutch Mom-
That is some awesome work you're doing Dutch Mom. I'm sure he is thankful to everyone who works with him. My twin and I also have CVI with nystagmus, ambliopia, strabismus and a cateract on one eye. It is really hard finding others with CVI- normally at the school for the blind there might be one or two students there with CVI but usually in the elementary building. My twin and I were the only two that had CVI but due from prematurity by 3 months.

I send my love and wishes to you and your family-
Please take care and be safe.
Wonderful work.

-CM

 

[Rose]

Hi Crystal,
I have rheumatoid arthritis of the cervical spine which is progressively getting worse, I was diagnosed with agoraphobia with panic disorder, and about two years had a couple heart attacks. My epilepsy has progressed from left temporal lobe when I was first diagnosed over 30 years ago to bi-lateral and I have developed both absence (they showed up on my last EEG)and complex partial seizures in addition to generalized tonic-clonic. But I figure when life throws ya lemons, make lemonade-that is all ya can do!

Peaceful Hugs,
Rose

 

[Dutch mom]

Hello Crystal,

My son does have sight and he can see, I'm so glad to say we can have very intensive eye contact. But he sees only in a small circle around him. The CVI causes a perceptive disorder in his brain and therefore he reacts slow on visual stimuli and has difficulties in processing different types of stimuli (visual, auditive, sensory) at the same time.

This quote is from another mom of a special needs child:

I was talking to a friend about what was going on with my child and he said:
"God gives the light loads to the weak horses and the heavy loads to the strong horses"
I said: "I don't feel like a strong horse!"
He replied: "You aren't, your son is."
That really helped put this illness in perspective.
I am there to help her along and to witness greatness -I already have- in this tiny little person.

 

[hawke86]

I have epilepsy,diabetes,bi-polar disorder,Major depression,anxiety attacks,partially blind and also have MS. Some people wonder how I can make it with all these disabilites. I just take it one day at a time.

 

[majormana]

yes I have multiple issues actually the seziures are newest to my list. I also have patial 18th chromsome abnormality were part of p arm copied it self and attached itself to 13th chromesome,brittle bone sydrome,juvinile osteo arthritis,vissualy impared, crooked fingers,crooked toes,uneven hips,and back issues(2nd newest). Thats by share list.

 

[Cinnabar]

Hi, Crystal

Yes. Apart from having Temporal Lobe Epilepsy, I have Dissociative Identity Condition and Bi-Polar Disorder. Research is being done connecting the three together. But there is no conclusive evidence. This is very frustrating for me. It's all so curious. So, I treat the three separately. I can only compartmentalize them, away from each other. All in all I feel divided. That's the best word, divided. But it is a comfort to know that I'm not alone, here. When I "get that" I somehow feel more whole.

 

[stilldancing_98]

My son Alex has epilepsy, scoliosis, one fuctioning kidney, intermittant explosive disorder, mentally slow, cognitive problems,he is my pride and joy, after him seeing me in a coma, brain cancer and etc. He is Awsome. And every day he gets better. And I have to give credit to my family. Without them, I reallydon't know where we would be right now.

 

[ziggidypoo]

I am inspired to see all of your positive attitudes with all of your problems - each person copes differently. I sincerely empathize with your situations. I cope with my multiple situations now by blogging. My afflictions are many - but am thankful to God for allowing me to be the best "ME" that I am capable of being. God bless you one and all in every aspect of your lives.

 

[Cinnabar]

Ziggedypoo, I like that. Being the "best "ME" that I'm capable of being. This is somthing we have control over.