Newbie - Question I can't find answer for

[greg175csp]

Hi everyone!

I've been browsing the forum as a guest for a month or so now and finally decided to join. I'm 38 yrs.old and was diagnosed with "clinical ALS" in Feb. 2006. The Cleveland Clinic confirmed the diagnosis in May, 2006. I was able to continue working as an armed guard until October, 2006, when I literally collapsed at work. I'm stubborn and refuse to quit until I can no longer do whatever it is I'm trying to accomplish, what can I say? :mrgreen:

Anyway, I'm an avid Radio Control model aircraft pilot. Now that I can no longer walk, it's darn near impossible to go to the local flying field and participate. The carrying of equipment,etc. Heck, even getting to the field is extremely difficult, let alone lugging stuff part way into what's basically a farm field in a manual wheelchair is an exercise in futility.

My question is, are there any other R/C enthusiasts on the board? If so, what solutions have you come up with to continue with your hobby?

Thanks all!
Greg
- Never quit, never surrender.

[CindyM]

Hi Greg- don't have an answer to your question but I am sure somebody does. i just wanted to welcome you to the forum and say I am glad you decided to join us! Cindy

[jimercat]

Hey Greg!

Sorry you've got dx of ALS.

Have you looked at http://www.geocities.com/kdn_63/

and
http://www.jensenjetmodels.com/id30.htm

[greg175csp]

Thanks for the welcome, Cindy

jimercat,
I haven't seen those. Thanks for the links!

[sherry0459]

Welcome Greg, Give it a few days you will have suggestions and maybe someone with your interest in radio controled planes. Sounds like fun. Hope to talk to you again soon. Hang in there we all are interested in your battle. Sherry

[Al]

Hey Greg. Welcome but sorry you had to come looking for us. Do you belong to an RC club? Most of the guy's I've met from them are a pretty helpful bunch. I'd think they would help you out if you asked. I know it's hard to ask for help. It took me a while before I learned to.
AL.

[greg175csp]

AL,
I don't belong toa local club here, having moved from Dayton to Harpers Ferry, but do know my old club's members helped out tremendously. I wasn't in a wheelchair full time when I last went tthe field to fly either, so logistics weren't so rough. I've also been reluctant to go to the local field due to....well....Me, I guess. Showing up to a new place and needing help that cuts into some stranger's hobby time is hard for me to do. Guess I should get over it, huh :)

[greg175csp]

Thanks for your welcome, Sherry :)
I must admit, I don't consider my fight with ALS a battle so much as an all out war. I just plain refuse to let this thing beat me. That's not always good, however, as I've got myself into a few downright scary situations. For example, I've been wallowing on the ground at the supermarket, unable to get up - All because I refused to admit I needed to use the store's scooter. You know, "I can still walk, so I'll walk until I drop"....well, I dropped. :) It's just darned hard to deal with limitations. I always look for a workaround.

[CindyM]

Hi Greg- I've been mentally preparing myself for someday maybe needing a scooter, mostly because I started out with several weeks of having legs that were dead, so to speak. Not knowing when and if they were going to work got me to thinking. If I get there again and stay that way, I tell myself that a scooter will allow me to remain active. Just a slightly different way of looking at the situation. The scooter lets us stay active, vs "too bad we have gotten to this point."

Course, this is what I tell myself this year. If the time comes, we will see what I have to say then!:-D Cindy

[greg175csp]

:D

Please don't get me wrong. I am eternally greatful for devices like my power wheelchair. I just have a hard time getting o the point of accepting I need the aid until I'm in over my head so to speak. Once I accept the fact, I usually make a statement like, "How was I doing (whatever) without this aid."

That's kinda what brought me to my initial question about the R/C stuff. I never even contemplated how I would get this pile of stuff to the flying site in a wheelchair, much less start the motors. Since I cannot get my power chair to the flying site, I have to use a manual one, so I don't even have an arm free to carry things one at the time.

All the "simple" little things one doesn't give half a thought to when able to walk become a monumental task when one cannot. :)

[CindyM]

Sorry Greg- I didn't think about transporting all the gear. It's almost likde you need a young "assistant." I am thinking of a young teen with long legs and maybe a rolling cart! :-D Cindy

[greg175csp]

That IS an idea. Find a way to hitch something to my regular chair....maybe a luggage dolly or something....Hmmmmmm :-)

[CindyM]

I was actually thinking of a gardening wagon, such as the type us older folks use to carry our tools and seeds and such. Seemed like a better idea than a child's little red wagon. The idea for a teenager to help you came from my understanding of the "big brother" program. You sound like you would be a great role model and what young boy wouldn't want to learn about model planes? Do you have any family members with a youngster who needs some fresh air or a male role model? Just thinking out loud...Cindy

[greg175csp]

I don't have anyone in the family aside from my mother.

Your thoughts about the cart have me thinking though. Thanks Cindy!

[Peg B]

Hi,

There are many tricks to using a chair and doing things like cooking on your own. I know that at rehab places the Occupation Therapist teaches those leaving how to do things like get in and out of a car, cook etc. There may be a way to connect to a rehab center or a hospital to get some lessons or advice or maybe you could go and observe the training given. Call and begin to ask and maybe someone can help you with this or lead you to someone. Even learning different tricks and tools for getting dressed is very helpful.

The other thing is I hire a 9 year old female who lives in my neighborhood for one hour a week for $5 to help me clear out things and to do more heavy duty clean up. We set the timer and get a lot done. She talks and I listen and we work and both feel good about what we get done. We walk my dog at the end of the hour. It seems to be a pretty good win win situation. I sort of knew her neighbor but not her or her family, but spoke to the mom and it works out very well. I don't know if this is something that might help but...Best Wishes, Peg

[kathmc]

Hi,

We had the problem of no extended family & being new to Lexington when the ( yet undiagnosised )disease progression started galloping. My husband, my only caregiver, works for UK here & they have a student employment office. He saw a flyer for their services.

We have since used them for unpacking, errands, cleaning, cooking and range of motion exercises. The home care agencies charge $18.00 up/hour for the above. They can not touch your meds to hand them to you which is something I now need. We pay the students $6.00up/hour. Since we don't have children this is a nice way to hear the current generations voice & veiws.

If there is a college, university or vocational training center in your area they may offer a similar service. Good luck. We know how hard it is when your alone.

kath
lexington, ky.

[pldo]

For the radio controlled plain- is there anyway to substitute voice controls? Or is there a computer that can control them? I have worked with special needs kids for a while and it seems as if there is a will there is a way.

[greg175csp]

Thanks everyone for the ideas!

Borrowing on some of everyone's ideas, I've devised a plan I will try out as soon as it gets built. A friend of my mother has a 14 year old that wants some extra money and is quite the handyman. (doesn't hurt that his dad is a carpenter) I am having him add a small hinged table top to my rollator I can no longer use. This will provide for a chair height, wheeled table with a storage box under it. He's going to help figure out how to harness it to my chair and oulia! instant wheelchair trailer :-)

[CindyM]

A wheel chair trailor! I love it! You'll have to send pictures when everything gets upp and going! Cindy

[scared of als]

hi its jenny just wanted to say hi wish me luck for tomorrow

[greg175csp]

I will send pics once it's up and going :-)

Jenny,
I do wish you good luck. Hang in there!