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Posted by mphcare (Member # 27382) on :
Does anyone participate in adaptive sports? Adaptive covers anyone who needs something extra.
So if you're in a wheelchair or have Downs or are blind or whatever, adaptive can get you playing outside.

Anyone tried it out with lyme?

Posted by Lymetoo (Member # 743) on :
I don't quite understand what it is. Could you elaborate?

Have you seen this?
Posted by mphcare (Member # 27382) on :
Thank you for the link. It helps put my friend's energy level in perspective.

I still think adaptive sports might be a good idea.

Adaptive sports programs offer 1:1 or 2:1 instruction for disabled students. In this case "disabled" just means out of the mainstream.

Adaptive instructors are trained to build their lessons around their students' abilities and energy levels. Everything is personalized.

Students could be blind, paralyzed, have CP, have developmental disabilities or really anything.

They have extra equipment so if you can stand, you can ski on two skis but for more physically impaired students they have sit skis. That's pretty much a wheelchair with one or two skis on the bottom instead of wheels.

I have found the adaptive community to be an incredibly helpful, nonjudgmental, supportive one.

My biggest concern for my friend is when she says she can't do anything while sick and she has no quality of life. I personally think sliding down a hill adds to quality of life even if someone else is doing the work.

Posted by Lymetoo (Member # 743) on :
She has Lyme???

Many are unable to do ANYTHING, but what little she CAN do should be encouraged and emphasized.

Give her the link so she can see that many struggle with what they are able or unable to do physically.
Posted by Keebler (Member # 12673) on :
If I shower today, I cannot prepare a meal. If I cook, I cannot shower.

I would LOVE to go slide down a hill - and I did try similar things in the past - only to land flat in bed for two months before I would try it again. I caused damage by over reaching. Now I can barely do anything "normal" like that.

There is a very big difference between being handicapped and having a toxic brain infection. It's not just that some lyme patients have become disabled - they are very ill.

Also to keep in mind is that, for many with lyme, bladder frequency is a tether.

The liver stress creates a severe fatigue.

Vestibular dysfunction also comes into this. Many with lyme have various degrees of vertigo. Many sports could be dangerous or stressful in such a case.

SOUNDS, too, are often painful to some lyme patients. That is very exhausting and can be startling.

Just BEING in nature, though, is ALWAYS good for me. It may be for her, too.

However, there are very few cars in which I can get there. Most car motors are so loud to my ears that I'm in tears long before arrival. If she is sensitive to sounds, that has to be considered.
I cannot even be with some people due to the pitch of their voice. Some women tend to talk in baby-talk frequency and that is really painful.

Appointments and hour timed sessions usually don't work well for those who are very ill. Most lyme patients don't know hour to hour (or even minute to minute) what they will be able to do. The stress of needing to have energy to be somewhere at a certain time - and endure it for any amount of time - can be too much.

When I could still go into a grocery store, I often would just have to leave my cart in the middle of an aisle and go straight home to bed.

Tai Chi, Qi Gong, Restorative Yoga, Pilates, walking, gentle swimming, some sort dance steps here and there - many one minute at a time several times a day --- those are the kind of things that help for many when very ill.

Of course, there are some do better than others but let the patient guide this. Listen to what they think they can do and they need to make the decisions.

Maybe getting out and going for a drive would be better. She might enjoy watching people slide down a hill. Just getting dressed to go, getting there, being there - that all takes tremendous effort.

Lyme is an infection of the brain. It's important to remember that. But it also causes dysfunction of the adrenal system and of mitochondria. It's very serious and very complex.

Each patient seems to know instinctively what they can do hour to hour. No stress at all should be placed as most lyme patients carry so much guilt to begin with that they don't need any more.

Really, even just observing others doing things - or going to a play - is wonderful therapy. What would she ENJOY doing - or seeing? Just BEING in nature, though, is ALWAYS good. BEING being the operative word - even if sitting on a lawn chair with a head rest, a change of venue is something most of us crave.

What are HER wishes? No one else can decide or tell her what she should enjoy. They might ask what she might enjoy but she has to guide this.

Try not to be disappointed if she is not the perfect student. She will be hurt by your disappointment. Her life is different in many ways nows and most people who do not have lyme really can't know the depth of those differences. She is the expert on her body now.

[ 08-19-2010, 04:39 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :

The Complexities of Lyme Disease - A Microbiology Tutorial

- by Thomas M. Grier M.Sc.


When to Suspect Lyme - by 
John D. Bleiweiss, M.D.


. . . Attempts to indulge avocational or vocational pursuits is frequently interdicted by either the languor of Lyme or by encephalopathy. . . .

. . . impairment of concentration, inattention, easy confusion or disorientation when attempting intellectual tasks. . . .

. . . Lyme patients can be easily irritated by anyone just walking into the same room even though eye contact is never made or words exchanged. . . .




Also keep in mind how you feel when you have a very bad flu. Do you feel like sliding down a mountain? For most, and for the woman with whom you work (as you've described her situation in past posts), chronic lyme is like have a very bad flu - day after day.

I am glad she has someone in her life like you, who is concerned for her happiness.

Be careful not to think of her as a project in terms of physical check-marks, though, or judge her performance. From my experience, it will probably work better for her to focus on how to bring in some enjoyment - not on what she can do. Just ask what will bring her a little joy.

And, I can see that is where you are coming from by finding sports that she does not have to work so hard at - but even that can be so much work for someone with lyme. So much. I know that's really hard for anyone healthy to understand.

And, it's very sad. It helps to bring in love. It's all about love.

So, remember, even just being around others can be stressful. And it's not at all a personality thing - it's a swollen brain and overwhelmed, toxic liver thing.

Now, I do hope she is being adequately treated by a LLMD so that the brain infection, sound and light sensitivity - and liver, adrenal and mitochondrial dysfunction - that goes with all this can get better.

[ 08-19-2010, 05:59 PM: Message edited by: Keebler ]
Posted by LightAtTheEnd (Member # 24065) on :
I have arthritis from an old injury, and I used to take yoga classes (pre Lyme). The teachers were very good at giving me alternative poses to try, when I couldn't do the regular ones. I also used to hike with two hiking sticks, which are used by nondisabled hikers but could double as crutches when needed.

I have not done much exercise or outdoor activity since I got Lyme. I am afraid of ticks, and I'm on doxy so I can't go in the sun, and I'm almost always too fatigued anyway. On top of that, I am no longer able to make commitments for specific dates and times because I never know if I will be well enough to show up, so I can't join groups, classes, clubs or teams right now.

I did take a vacation for 2 weeks before I got diagnosed, and spent every day riding in a car and then traipsing up and down stairs and walking all over several tourist attractions. Every day I was exhausted and in extreme pain and moving slower and slower by the end of the day, and had no idea why. When I got home from the trip, I spent two whole days in bed, thinking it was extreme jetlag.

My Lyme symptoms have always been a lot milder than many people's, but even so, that trip absolutely did me in. I did not enjoy it nearly as much as I expected to, because I was on the verge of tears from exhaustion and pain all the time.

I am very enthusiastic about adaptive sports and adaptive technology for physical limitations.

However, I agree with the cautions against overdoing it with Lyme disease. I am still trying to learn the trick of only using half of whatever small amount of energy I possess at the time, so as to not get wiped out. It's also the case that many people with Lyme have mental limitations as well as physical ones. We are cautioned not to do any aerobic exercise because it can lower the immune system and cause a bad Lyme flare.

Plus if you have vertigo and brain fog, you might fall off the chair skis or get lost on a downhill slope. [Smile] (Lyme joke)

But we are encouraged to do what gentle exercise we can handle, get in the sun a bit if we're able to, find social support, and we definitely need to have all the positive experiences we can in order to fight off depression.

So if somebody is able to do an enjoyable sport with adaptive technology or assistance, on a day when they have enough energy (and sunscreen), then it could be a positive thing. Accomplishing something you thought you couldn't do any more can be a great feeling, even if you only do it once.

But if the sport is too exhausting or stressful, it would be bad.

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