FREE TIME FOR PEOPLE WITH LIMITED MOVEMENT

[Renee Spears]

I am wheelchair bound and have very little if any movement of my arms. I can only move one hand, and not very well. I've been trying to think of different things I can do to keep myself occupied. I don't like movies or TV, and I spend most of my free time on the computer playing games. I must always have someone with me, and because of certain rules, my nurses that are with me 18 hours a day, are not allowed to take me anywhere. I have nurses from midnight to 9AM,and 10AM to 4PM and then again at 9PM to midnight, so I have 6 hours with my mom and dad who don't like to go anywhere, BUT I DO!!! Sometimes I am so bored that I THINK I'M GONNA LOSE IT!!! I would appreciate it if you had any ideas what I could do in my spare time, and tell me what other GAN patients in my situation do. Thanks, Renee

[Mary Pizzurro]

Keeping busy can be a difficult task when you are living with a neuromuscular condition especially with limited movement. I'm sure it's frustrating to rely on caretakers for even simple things.

Although it's quite expensive, a modified vehicle is extremely convenient. Some funding (for the conversion part of the van) can come from a Vocational Rehabilitation program. Long term financing is also available over a ten year period to keep the cost of the payment down. A used converted vehicle is a great alternative and more affordable.

If you do not have a modified vehicle, another form of transportion is "door to door" service usally provided by your local transit authority. Some paperwork may have to be filled out but it can probably be done by a licensed professional such as a CNA, LPN, or RN saving a trip to the doctor's office. This is a great way to get out and about. Chances are you have to schedule your trip a day in advance, but it's worth it. PCA's in the State of Florida ride for free and we pay about a $3.00 for a one-way trip. If money is not a problem, an accessible taxi cab is also a way to go.

We have volunteers come to the house about twice per week. Volunteers are great for playing board games, conversation and just to have a different person to talk to.

Volunteering is also great thing to do. Mike volunteers at Shriner's Hospital here in Tampa and really enjoys it.

Keep going to school if you possibly can even if you just take fun courses.

You need to contact your health care agency. I allow our caretakers to drive our van and Mike and Joe go out as much as possible. Your home health care agency may want them to sign a "liability release" in order for your caretakers to drive you out and about. Check into this further as you may be mistaken on the "rule" you were talking about. I know several nurses here who drive patients either in the patient's vehicle or their own vehicle.

Think about hiring an individual your age who is responsible and can take you where you want to go.

Join a support group.

Seeking employment is extremtly difficult. Check with your local Wal-Mart or another store you may like to see if there is any potential job opportunity. This is a great way to get out of the house. Your caregiver can help you with your job duties if necessary.

Hope some of these suggestions help. Please email me at any time. I would like to have your email address too.
Here is mine [e-mail]

[Laurie Rae]

Hi Renee, nice to meet you and happy to be here. My daughter Tanya has limited use of one hand and her other hand still functions a little. I know you say you can't be taken out anywhere but if you have a patio/deck to be outside on sometimes, maybe you can watch all the birds outside and check out all the different colours of them. No, it's not boring! ;) Tanya is easily distracted but she does love to watch the birds and we try to find all the different coloured ones. I put a windmill birdhouse up outside her window so that when she gets bored watching t.v. she can see them going in and out of the house. Sometimes we just go sit out on the deck and talk about whatever comes to mind to pass the time. Our caregivers are not allowed to take the girls for a drive either but they can take them out for walks and at least it's different scenery once in awhile.

Laurie