I have lyme disease myself and am writing a paper for class. I'm wondering how many of you have had to use a wheelchair and what was the reason? Joint pain? Muscle pain? Vestibular issues? How long were you relegated to it?
Thanks for any responses
Posted by Keebler (Member # 12673) on :
- Started needing wheelchair in 1996.
Diagnosed with 3 tick-borne infections in 1997. Three more chronic stealth infections in 2010. Never had official treatment but only patchwork approaches.
Still would need a wheelchair in most venues (but have not been out in public in 3.5 years). I have been able to go to isolated park a few times a year, though.
Can walk in my apt.
Do not own a wheelchair. Have only used public ones, on occasion.
Cannot use any electric wheelchair due to the noise, vibration and inability to anticipate all its jerking starts and stops.
Very unsettling for someone with vestibular issues. Like a carnival ride gone bonkers.
I can walk in my apt. as long as my neighbors don't slam their doors (which some do so often now). When they slam a door, I'm tossed to the floor. I just try to anticipate the instant I hear them rustling and sit down.
Were I even able to go out in public, I would still need one (especially at the airport when I used to fly).
I'm stronger now to walk better short distances, but ONLY IF no sensory startles - but those are everywhere - so it's just not safe to try to walk in public.
I can walk for a while in a very secluded park, with no parking lot or road - or people - around.
[But I'm not being officially treated so don't want others to get discouraged. Treatment has been shown to help most in such cases.]
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Some of this overlaps. Including past and current:
* Ataxia
* Muscle Weakness
* Severe Fatigue
* Vestibular Issues (Balance & Seizures triggered by sensory startles from sudden sounds, motion & flashes)
* Seizures / Falls / Fainting
* NMH, neurally mediated hypotension where blood pressure drops suddenly, common with lyme)
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I hope you will add this aspect to your report so that more people will be aware:
STARTLES - sounds, flashes (cell phone cameras)
Regarding the auditory startles, you might say: just wear ear plugs. Well,for many with vestibular conditions, ear plugs can increase the balance issues - it's harder to walk with ears plugs.
Ear muffs and even the best noise cancellation headphones are not enough protection against the barbaric harsh beeps of automobile alarms when someone locks or unlocks a car in a parking lot.
Same with beeps and buzzes in stores and especially with leaf blowers where are everywhere, all year long.
Still, noise cancellation headphones are tools are essential in helping tone things down about 30% in my case.
I've still had major seizures from sudden beeps even wearing both professional molded earplugs AND Bose noise cancellation headset.
But, the electronics of these units, themselves, can increase tinnitus afterward.
LEAF BLOWERS
A simple walk in the neighborhood is not so simple for someone with auditory issues. (Breathing issues are also a concern, too.)
Can we all use rakes and brooms a bit more often? Better for everyone's health in the long run.
BASS BEAT
Music with heavy bass beats can trigger seizures in no time flat.
If you are driving with loud music, please be aware of the health risk this can be to others who may be affected by a heavy driving beat.
Same with music at home. Be aware that vibrations have caused bridges to collapse. Vibrations travel through walls.
Those with heart conditions, too, can be more adversely affected.
I want people to enjoy music but, please, that bass driving intensity can kill me - literally. And, when it doesn't, it's just so painful and disorienting that I want to kill myself to escape it. And I'm otherwise very well grounded and logical.
Those deep vibrations carry for blocks, really.
Just turn down the sub-woofer stuff, the bass stuff, and it could save lives. You can still hear the music, really - just not be moved by the force of the speakers.
Remember that even if someone wears ear plugs, professional noise protective muffs or noise cancellation headphones, they do not block all sounds and do nearly nothing to block deep pulses, beats and vibrations riffs.
Sound travels though our skin, deep into our bones. It can travel to the heart and affect heart rhythm.
Sound travels through the nose, too, and can shake, rattle and roll the brain, literally.
This can be sheer torture for many with various health conditions. The elevated stress hormones also can soar and trigger heart attacks.
I'm not sure this little post of mine will go anywhere or do anything other than prompt anger for trying to silence the world. That is not my intent.
Good sounds - even good vibrations - should not torture or cause a life-threatening reaction, or having anyone wishing to die right then and there.
Sounds can be wonderful, energizing and uplifting and still be safe - for everyone.
Please? Thank you. -
[ 06-14-2012, 08:04 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- I posted way more than I thought I would, in hopes that since this is for a school assignment, it might help the world become more "walkable" for everyone, whether wheels, wings or feet get them around.
Hope this helps. Thanks for doing a paper that will shed some light on just one aspect of the effects of lyme & co. -
[ 06-14-2012, 08:13 PM: Message edited by: Keebler ]
Posted by Lymetoo (Member # 743) on :
moving to general support
Posted by lpkayak (Member # 5230) on :
i do. i cant think if i use energy to walk. sometimes it is leg or foot pain...but mostly wears me out. started txing lyme in 97...started wc in 05...intermittenly...but 8 months straight before knees were replaced and alot since lipitor messed up my muscles 2 yrs ago
Posted by lymenow (Member # 36175) on :
Wow Thank you Keebler. I have so many of these symptoms as well. Forcing my way through school. Sounds like so much of neuro lyme is in the ears.
I'm writing the paper on TBI's and the links to other other illnesses such as MS, ALS, Parkinson's and Autism. It's alarming, not sure why such glaringly obvious connections are ignored.
Great information!
Posted by lymeladyinNY (Member # 10235) on :
Wheelchair on and off since 2003. I'm not sure why I need it sometimes. I guess it's severe fatigue, but mostly I think it's a babesia symptom. My upper thighs burn and I just can't put one foot in front of the other. Lyme in my hips and legs have also caused me not to walk. My knees will bend and I can't stand straight, or I can stand up, but my legs turn inward with my knees touching and my feet turned inward. Other days I walk either with a heavy limp or almost normally. Everything seems to be related to how my head and neck feel - do they ache or not.