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Solo Walking - Out there - SPS friendly?

Betty-Oops
  • By Betty-Oops
  • Posted June 26, 2009 at 9:15 am · 26 replies
  • Shared with the public
0 Recommendations

I posted yesterday about my wistful thinking about walking. Thinking is better if followed by postive action, so...

I want to walk my new neighborhood, but SPS symptoms of agoraphopia, heightened startle, (barking dogs, traffic), balance, and rigidity require gait aids. My hiking poles are useless when spasm tremors render my body rigid and immobile...consuming panic and falls.

I have a walker, but it is not fitness-oriented and draws scrutiny, another trigger for my SPS symptoms. I do well with grocery carts, but I don't own one. Mentally doing some SPS adaptions in regard to my limitations, I bought an umbrella stroller last night. I chose camouflage over Winnie The Pooh. Seemed more appropriate somehow. Rambo or Piglet?

I have some heavy-duty mint green garbage bags that I will put a few bricks in for weight, stabilizing the stroller while giving me some extra oomph to a walking workout.

The stroller can hold my water, cell phone, and emergency meds, along with my hiking pole. With my SPS perception sensitivities setting off symptoms, I am very comfortable with this idea...emboldened.

I would rather appear odd than disabled. Make sense?

Explore topics in this journal entry and replies:

Exercise Falls Confusion Diabetes Anxiety Pain Memory Rare diseases Dystonia Osteoarthritis Stress

26 replies

deebelle

yeah, makes sense..clever idea...
Your writing style is very unique. Do you write for hobby, or profession?


Hugs to you;
Dee

Betty-Oops

Hi Dee,

My writing, hobby or profession, depends on the reader's perspective? For me, words are passion.

I am glad I make sense to someone in this world. ;) I read your profile...awesome lady with an incredible outlook on life. I agree with you. It is sad it took disability to make me fully appreciate "the moment." I relate to planning my life around physical symptoms and medication timing...amazing windows of opportunity. ;)

Osteoarthritis. I read where you write it is hereditary? I will need to look this up. My mom has osteoarthritis. I already have SPS and diabetes. Auotimmune disease is rampant in my genetic predisposition. Mom also has hypo-thyroid and a dystonia. My baby brother is diabetic with back/disc problems?

Hugs back to you and a wish for a window!

jdfwood

Would headphones possibly help with the startle affect you get from loud noises??? Just an idea, I need to learn more about SPS.

Tinybird

I have had SPS for many years. I found that wearing my ipod with ear buds helpful in regard to startle effect. The only problem is if someone or something comes upon you from an angle you can see. I used to wear them at work in a shipping area and if a co-worker came up behind me...boom! I was like a cat upside down on the ceiling! And of course then down on the ground with horrible spasms and stiffness.

I think anything that helps you to get exercise, get you out of the house and moving is a great idea! It helps you both body and mind. Take things one day at a time and keep your positive attitude. That makes all the difference in the world.

As far as other people are concerned, we cannot let them discourage us. People seem to be so quick to judge. If anything, SPS has given me more of a back bone. I have had many people pass judgement on me and I have learned to either ignore it or to try and educate the person in question.

I once had some city employees question my handi-capped placard. This was at city hall next to the police station so they called 911 to ask an officer to come check me out. When I returned to my truck, the officer didn't ask me for my license he started grilling me about my illness (handicap). He delayed me for over 30 minutes before he took my placard and license and ran my plates with the MVD (DMV). He was very rude. The city workers made a comment about how doctors were giving those placards out like candy. I drove directly next door to the police station and filed a complaint against the officer. I got an apology and the officer was repremanded. All he had to do was run my plate and the placard to see that I was leagally allowed to park in a handicapped parking space.

Anyway, my point is that if the stroller works for you and people stare...either ignore them or call them out on it if you can. Your not weird or crazy, your being creative in finding ways to keep moving and I give you major props for coming up with the idea!!

Best Wishes,

Tinybird

Betty-Oops

Hi JDF,

SPS is a personalized disorder in that he can creatively customize the severity of symptoms, physical and sensory, indiividally or with just with me within a given day.

Headphones, I use. I find calming music relaxing. Like Tinybird, I have also been "drop to the ground" startled when someone , unexpectedly, appears in "my space," i.e., comfort zone, line of vision, proximity challenge?

While SPS can be a very vicious disorder, it is a fascinating condition to study, "never know what you are going to get," Cracker Jack booby prize to live.

Thank you for your interest and suggestion. My best to you with your conditions.

Betty-Oops

Hi Tinybird!

I can so relate to your comments. I like the way you think. In my old neighborhood, I could walk around a set of soccer fields with my hiking poles: grassy, open, and quiet during the day. When asked about the poles I would just say I have balance issues.

In my new place, I tried walking in a small park, but it is sensory overload...always a lot of people, jumping children, some dogs, and bench-sitters checking me out - as in, "What is that lady doing?"

Two older gentlmen had been assessing me and stopped me to settle their dispute. One thought I was "training," while the other thought I was "doing therapy." I condensed my SPS explanation to my usual, "neurological balance problems." I became very self-concious knowing I was being scrutinized...a sensory trigger for me. Each lap around their bench tightened my back in rippling spasms.

Being disabled from SPS, I have learned if a disability isn't "visible," many people do not recognize it or are quick to pass judgement. Some people want to coddle me. (I can't stand that.) Others are genuinely helpful and interesested. A few could care less. I will try to inform most, but some aren't worth a second's breath.

The handicap placard! I appreciate having mine. I just did not know public approval requires my medical history tattooed on my behind. Your experience with that officer...wow! Talk about a stress trigger! Kudos to you, my lady. I love a person of positive action. ;)

Back to the stroller! I can't cross streets, just on rare occasions. The stroller is of benefit for my focus, something to grasp, and a way to transport my life-support: cellphone, glucometer, sugar tabs, water, and SPS meds...Oh! And handles to hang my placard! So much for a "simple" walk? ;)

Thank you for sharing and well wishes. (I wish I could file a complaint against that officer too!) ;)

“Look at life through the windshield, not the rear-view mirror”

stevebro

Bety
Have you seen the walkers with a built-in seat in front? A lot of places like drugstores carry them. A fiend has one. They can fold flat for putting in a car, and have some very handy hand-brakes a la bicycles. These come in very handy to keep it from escaping as you rise from a chair to start walking. Price is usually good at discount - maybe $100.
Steve

Betty-Oops

Hi Steve,

Thanks for the tip. I will check them out. My problem is I do well in the house, just not outside. My fear is if I give in, I may lose indoor mobility. But, again, thanks for the tip and I will check them out. My motto is to stay safe. Risky can result in injury from falling, something I can try to avoid.

"Find the good & praise it."

beansy

You are an inspiration and a tough and brave person. I do not know about SPS. I know about my own hurdles and 50 years of struggling. But don't feel bad for me at all. The struggles made me who I am.

I read the following somewhere and have kept it in my head and I twill share it again on this site:

Measure the strengths of a disabled person by the amount of effort it takes to convince them not to do what they are bent on doing.

beans

stevebro

Ms. Boop
Don't give in!

I can handle walking unassisted, but m ust bee vigilant for the little things - cracks in the sidewalk, wavy surfaces of streets I'm crossing and other weird stuff. I rely much more on looking out for these hazards than I should. Bifocals complicate matters because the lower portion of the lens is supposed to help with details like reading, whereas I need to be vigilant about things just in front of my feet. I've even considered going back to two pairs of glasses - Rx for distance and off--the -rack for reading. We learn all these coping mechanisms the hard way.
Steve

Domenick

Hello my friend, I belong to a support group for people with SPS. This group is the most valuable group in my life. Here is the website. Please look around and read some conversations. Members are from all over the world. People on this site are very serious about SPS and do not take kindly to wise guys so please keep that in mind. http://stiffman.net/mailman/listinfo/sps

Domenick

Betty-Oops

Hi Domenick,

I am familiar with this group, friends with a few. I tried the group for awhile, but unsubscribed. It is not a good fit for me. My computer time is limited. I had difficulty sorting through the massive 'chat' email not relevant to SPS or me.

SPS is often accompanied by many other health issues. I am really liking this site as I can browse other disease communities that have an insider perspective about that particular disorder, in my case, diabetes and genetic/autoimmune disorders.

This site is affiliated with NORD - an outreach for rare diseases. I personally feel it better serves the SPS community to not be secluded in a private email group, but to share SPS in a forum where medical interest may be piqued, leading to research...not to mention a broader social awareness of SPS. NORD also has a research fund specific for SPS, another plus.

Monitored by some healthcare professionals, I have seen occasional advice posts from the nurse or genetic counselor.

It is my hope that the small group of us on this site become more actively involved in sharing with one another, helping each other, and furthering awareness for SPS. It is also good to read of the common struggles we share with others with a different 'rare' disorder. Reading the pain of others helps me keep a healthy perspective that suffering wears many diagnostic disguises.

Thank you for caring and your kind suggestion. I appreciate it! My best to you! :)

“Look at life through the windshield, not the rear-view mirror”

Betty-Oops

Hi Beansy,

Thank you for your response and encouragement. Looking at your profile, you understand challenge, determination, and perseverance...I like that. :)

My best to you. You are a very special lady. :)

maux

I love shopping carts! I think the pram idea is hilarious. I also love Winnie the Poo! Too bad I have to use stairs to get in the subway. I'm on braintalk. And holding down the fort. One of the members joined here. Please come visit us. http://brain.hastypastry.net/forums/forumdisplay.php?f=253

Betty-Oops

Thanks for the invite. I have read Braintalk before, but it has been awhile. There is a smattering of small clusters of SPSers on the net. I wish I had the energy to respond to them all.

Stairs!! You get an award. Gives a new meaning to "Stairmaster," doesn't it? :)

maux

I am truly a master of standing there if someone thinks they can simply scoot past me as I am holding the hand-rail.

Celise65

I love all of the creativity that keeps us in motion.
Ive been invited to join family and friends to watch fireworks for the fourth. At first I was going to decline, but Ive decided to bring out the protective gear of ear plugs, sunglasses, and a strong person to hold on to! Happy Holiday to all!

maux

I have a dream: TEAM SPAZZ!

Inspired by Betty-Oops and our mutual affection for..... shopping carts!

I can't help it, but I have a crazy idea. Let's start our own SPS Foundation and instead of a bicycle race, we'll have a shopping cart race!

I am inspired by the "Red Riders" in The Race For the Cure. The Red Riders are the diabetics. They now have races (or leisurely bike rides) all over the world.

My second inspiration is my own insanity and the fact that I'm a performance artist by trade. I think a bunch of disabled people pushing shopping carts could be hilarious, not to mention the fact that we would be ripping the hood off of our "invisible illness".

Thirdly, I'd like to meet my fellow SPS'ers. We need to join forces. The US gov't's clinical trials are a joke.

Most importantly: We need private funding.

We only need to get people to give us money to travel somewhere and make idiots of ourselves. (To start).

I am also inspired by contemporary protest tactics that have included a lot of theatricality. It gets the media's attention. Additionally, there's a shopping cart race that the artists do every year. I think it started in San Fran, based on an Inuit tradition of dog-sledding. (Or something like that.) Goofy gorilla art does not go after media attention but gets it nonetheless.

This is just an idea, but I'm putting it out there b/c it's stuck in my head. I can do initial PR. (We make enough money and we can hire a professional). I can find sponsors. (I think. I did it when I was funding theater projects in my pre-SMS years.) We can start small. We just need a game plan.

I wonder if there are any other SPS'ers who are willing to take on a such a big project, b/c it can't happen without at least 50% of us, minimally, "into the idea" if not willing/able to participate or get donors. Support for the idea should be enough impetus to get it off the ground.

Maybe we can include other NORDS, eg. Isaacs Syndrome and Sjorgens Syndrome. We are a DISEASE, not a syndrome and LOOKIE, we are also Real People. I am tired of being ignored and having IVIG (and other old pharamaceutical 'genius' ideas) being "tested" and then pushed on us. I've had this illness for ten years and nothing has changed but the number of google search hits for Stiff Man Syndrome.

I dream of a Daily News front page showing "SPazzerS make Noise in Times Square."

Of course, I'd want it here in NYC for the media coverage but that's where TEAM SPAZZ comes in. Some of you prolly can't handle travel and NY is not a very friendly place. Honestly, NYC people are wonderful but it's noisy and the actual city is demented at times. I'm just thinking a plane "hub" type place would be good (and less expensive for travel). Maybe I'm wrong and someone has a better place in mind. Centrally located. There are lots of us in the UK and Australia. I'm thinking we should meet up somewhere in the middle.

Hey. We'll invite the Parkinson folks (fellow spazzers:)) - even thought they already got mad press and have a disease that is not called a "syndrome". Maybe we can race the Parkinson folks. hum. Are there any famous people with our disease?

We are all winners. I'm not imagining a "real" race. We can have golf-type "handicaps" for those unable to walk and such and the idea of a person in a wheelchair pushing a shopping cart for fame and glory can not be imitated! Or ignored! It should be a day of fellowship and fun. Putting a face to disease that could some genetic testing and research already. TYVM.

Even Sjorgens Syndrome is organized with real private research underway - if my memory is correct. We can help each other, one disease to another.

I am inspired by this site - Inspire.

NORD does nothing for me. Literally.

What do you think? anyone?

stevebro

Hey Maux
I like your idea to gain fame and attention to our illness. I know we have a bunch of creative people who participate in our site - maybe there's a link.

Could we do an "It's o.k. for contributors to laugh" event? Everybody has been taught the politically correct response of simulated empathy those with disabilities, but then they look the other way. There is our fund to do research, but I'm still not sure how to contribute. We need a bigger audience to get the dollars we need to find out how to beat our disease. A funny, visually exciting event is certainly better than holding our hats out to passers-by after we have taken a fall. What are we paying to support? Endowing a researcher to study SPS? Renewing efforts at NIH? Hiring a video artist to do a fun video to document SPS? Maybe somebody from the medical world could inform us what is needed to help us cure our condition.

I can't help but say "hello to Larry and Curly, too". There, I've done it.
Steve

maux

Larry and Curly are currently taking the piss... Fired, they are, once again.

Absolutely no laughing aloud allowed. This is a serious serious disease which is why I think a comedian should MC.

There's a fund? Where's the fund? who runs the fund? do we start our own fund?

I think our ultimate goal should be research. And maybe that person who has clue on what to research first may just appear, no thanks to Larry or Curly. Whups, they they go. Fired again..

we can start small. I just can't do it myself. [Now I can't stop...] ..and Larry and Curly are no help.

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