Wheelchair

[bmahaney214]

Hi everyone!! My name is Brynne. I am sixteen years old and was diagnosed with Dysautonomia a little over a year ago, although it was not an easy diagnosis to come by. I have recently become to sick to attend school, or leave the house for that matter. i have successfully only made one short trip to the food store with my mom, and by the end i was surely feeling weak. i can occasioally take short walks around my neighborhood. These take a lot out of me. even taking a shower exhausts me. It's very disappointing to me. although i am trying to get use to the things i cannot do any more. I was finally starting to feel well again and this all came and i am sicker then i ever was.

My dad talked to me the other day about how he feels bad that i can no longer go out with our family or see my friends. (I'm even going to miss my cousins wedding next month:( ) He told me that he has been thinking about seeing how to get me a wheel chair for when i leave the house. How would we go about doing this and do you think it is a good idea?

I'm afraid that if i get accustomed to not walking around, it will become harder. I'm also a little self-conscious about it. i would really like to hear our opinions.

THANK YOU- Brynne.

[all4family]

Hi Brynne,

I actually made a similar post after I was first diagnosed. My husband bought me a wheelchair, and I was torn between wanting to have the freedom to do things, and what the wheelchair meant to me. In the end I couldn't have been happier that he bought it for me. I now have an electric wheelchair, and a manual one. I had been doing pretty good and in fact believed myself to be better, and the wheelchair sat in my shed for probably about 7 or 8 months. I just recently pulled it back out. If you are on here asking about it, I really don't believe you will become dependant. Any time I can walk I do. In fact my manual wheelchair doesn't have a place for my feet, so I use my legs to walk me around while I am sitting. This gives me exercise, but really extends what I can do. I also use the carts at the stores that have them. I had spent many years not doing things because I just couldn't, and when I got the wheelchair I could suddenly do things again. It meant so much to me! It gave me back my life! I hope you will let your father do this for you. It may surprise you how much it will help. As for how to get one we bought both of ours at a second hand store in our area. You can get a manual one for a pretty good price I will bet. Or you could ask your doctor, and depending on your insurance it should cover some of it if not all. I hope this helps.

Suzy

[bmahaney214]

Thank you Suzy! I have only been stuck at home for a little over two months and it's already taking its toll on me. I think i will ask my dad to look into this. I really want to be able to go out and do stuff every once in a while.

[55baron]

Oh Brynne! THis is definately a torn question. we've been told that if you use a wheelchair, your to sick to go anywhere..... I don't believe that is true.

My daughter is 5 yr into to pots diagnosis. It got to the point where she was unable to walk 10 steps without resting, she didn't leave the house because it was to exhausting and it would take days sometimes to recover.

My thoughts are, if it makes you able to go places for a longer time, DEFINATELY use it!!

It won't decondition that much, if you still do strengthening exercises and walk short distances... its ok

After 5 years and more diagnosis and more surgeries, my daughter is in a wheelchair all the time, but its not walking enough and using her wheelchair. Its from 3 surgeries in 3 month, not enough time to recover... or its another condition altogether, waiting on those tests!! Still trying to figure that out..

My strong opinion is, if it enables you to be out and about for a longer time, do it!!

Its VERY important to keep the socialization of life as active as possible.

Cathy

[corina]

hi brynne welcome to the forum! there are a lot of us who have had to decide on this issue which isn't an easy one. for me it felt like giving up on my "normal" life and admitting there was something wrong with me. after getting used to the idea i felt SO much better to be able to go out with my family again! i now can laugh at the idea that on my first wheelchair trip i wore sunglasses as in not wanting to be recognised, but at that time it helped me

fyi brynne, as a moderator i'd like to ask you not to quote in writing replies. it takes up a lot of space and makes it more difficult to read. you can just mention the name of the person you're referring to, like you did underneath te quoting. i'm aware you're a newbie so not yet familiar with how to use the forum but don't worrie it will become easy for you in time!

again, welcome at the forum, i hope it will give you the answers you're looking for!

corina

[bmahaney214]

thank you Cathy and Corina. i know that i should probably get one, it's just hard coming to terms with the fact that i need one. i started physical thereapy last year in march and finally graduated out of it in august after going for over and hour three times a week. it was VERY hard work but i really was finally starting to feel better. now i cant leave my house. it's just going to take some time to get use to the thing i can no longer do.

[potsgirl]

Welcome to the forum, Brynne!

As others have written, and in many previous posts, this has been an issue for a lot of members at some point during their illness. My doctor gave me a prescription for a wheelchair when I was in a really low period, and I was able to acquire one through my insurance with no cost. The same was true for compression hose. Make sure you try to go through your insurance for needed medical aides first before you go out and buy one.

I have used my wheelchair on occasion, and have the same feelings of trepidation and feeling like everyone was looking at me like I wasn't sick so why the handicapped placard? Why the wheelchair? It's so worth using the wheelchair, or a cane, or a walker - whatever helps you - to be able to get outside and do things once in a while. Being homebound gets old very fast, as I'm sure you're finding out. So use what you need to so you can live at the highest level that your disease lets you, and that will probably vary over time.

You go, girl!

[mwise]

Hi Brynne,

Welcome to the best forum and loving support family. I like you and others felt the same way about using a Wheelchair and a Rollator Walker (Walker with a Seat). It is so worth using them and being able to have some normalcy in life. When I can't just walk short distances or know I am going to be out for long periods such as going to my twin 16 yr old daughters' school activities, I use the Wheelchair. I use the Rollator Walker around the house, at work and at the mall. Yes, I go to the mall with my daughters and their friends-they actually find the Rollator Walker Cool and think I am sooo cute pushing my Walker. People are very accommodating, helpful and not judgemental. You can also decorate your Wheelchair & Walker to look pretty rad. I say discuss it with your dad and see if you can get a prescription from a doctor for both as some insurances will pay for them.

You shared that you are feeling sicker than ever. What treatment modalities has your doctor prescribed for you? Any salt loading, support hose, vitamins, etc...

Are you taking any medication for your dysautonomia? This is the best place for a lot of love and support. A great big HUG to you

[bmahaney214]

Thank you potsgirl and mwise.

I tried florinef and that didn't seem to be helping. after doubling the dosage i felt worse. so i stopped taking that and tried Midodrine. i was doing ok with that but after about a week i started to feel like i couldn't breathe. we determined that this was a uncommon side effect of the medicine and i stopped taking that too. my blood oxygen level was fine and i was breathing fine, but i just felt like i couldn't. I do take salt tablets and drink PLENTY of water. that's all though. i go to see a new doctor next week. he is a cardiologist. hopefully i will get some help!

[janiedelite]

My insurance wouldn't pay for a wheelchair so I bought a used one through craigslist. Either way, try to get the lightest one possible so it's easier for your family to get it in and out of the car.

Suzy, it's is SO wonderful to see you back!

[Rachel]

Hi Brynne,

Using a wheelchair to enable you to get out more is a good thing. It is a hard step to take, but I think you'll be glad once you do. You will no longer be quite so homebound.

You mentioned that you are afraid that you'll become accustomed to not walking around, thus making walking harder. That isn't likely to happen. You don't have to use the wheelchair all the time, just when you need it. You can use it as a tool to enable you to be more active when you would otherwise have to be sitting at home. When you are feeling well enough to walk, you can leave the chair at home.

I have used a wheelchair for over 6 years now, and it enables me to do much more than I would be able to otherwise. I use it almost every time I leave our apartment. Exceptions are situations like going to a friend's house when I can go straight in and lie down on the couch.

I don't use my wheelchair at home because we live in an 800 square foot apartment, and I am usually strong enough to walk around the apartment on my own as needed. Although there are still the occasional times when I can't walk the 15ft to bed, and my husband has to carry me. But I am committed to walking as much as I possibly can. I have a walker that I use around the apartment as needed, and when I take the children outside to play.

I remember being self conscious when I first got my wheelchair. It definitely was weird! But it was also necessary, so I learned to deal with it. And in time I have really come to appreciate my wheelchair because of the freedom it allows me to have. Without my wheelchair and my husband to push me around, there is no possible way I could do things like go to the zoo with my children, go for a "walk" outside, go to church, etc.

Being disabled and using a wheelchair is a humbling experience. Over the years I have learned to swallow my pride, and sometimes even laugh and the strange situations in which I find myself. I have mostly gotten over the fear of what others think when I do strange things out in public. It is still a little embarrassing, but I'd rather go out and look "different" then be completely homebound. I am to the point now where I often cannot sit up in my wheelchair for more than an hour. But I don't want to miss out on fun stuff. I have laid down on the floor at my brother's wedding, at my sister's graduation, in restaurants and stores, at conferences, etc.

That would be sad if you have to miss your cousin's wedding. Don't be afraid to go in a wheelchair or to lie down for a little while if you need to. Dysautonomai takes a lot away from us, but if you get creative you can sometimes find ways to work around the difficulties.

You mentioned that showers are exhausting. Do you have a shower stool? You can get one online for around $30. Many of us find them very beneficial for showering. You might want to check into one of those. Depending on what kind of insurance you have, it might be covered by your insurance. A wheelchair might be covered as well. You'll just have to check with your insurance to see if they will cover it, and if they do then you need to get a prescription for one from your doctor. Even if your insurance doesn't cover the wheelchair you can buy one yourself from an online store, at a medical supply store, or on a place like craigslist.

I have rambled on quite a lot, so I'm going to be quiet now. I wish you all the best as you make these tough decisions.

Rachel

[Frugalmama]

Hi Brynne! I have actually been going through this exact same thing, and the decision is not an easy one! We decided to rent one for outings to stores and such, and it has been awesome. I also realized that I could use it to wheel around my house, and now I feel silly that I didn't think of it before. While I'm more than capable of getting around the house, I run into trouble with doing things with/for my little ones. The first evening I got the chair, I was able to, one after the other, take my two older kids to the potty and put them to bed. I can't even tell you the last time I did that since it requires so much standing and waiting. It was total freedom! Yes, I do feel dorky about using it in public, but I'm working on that . We're actually also looking at getting a scooter so I can get around without needing to be pushed...we have three kids four and under, so my husband is always on stroller duty . Part of my struggle lies, I think, in that this isn't an easy illness to explain. If you ran into someone you know and they asked why you're in the chair, and you could blame a broken leg, I'm sure you wouldn't feel odd about using the chair! I found it helped to work on a quick explanation so .i was prepared! But please do what you can to enjoy "normal" life! As the others have mentioned, quality of life is incredibly important.

I am in Canada, so I'm not sure what programs are availble in your area, but I am getting a permanent chair through the society for disabled persons in my province (free of charge). Maybe you have a similar program around where you are?

[ACrolley1]

Hi Brynne,

As everyone else has said, I think purchasing a wheelchair would be a very smart decision! I have a manual wheelchair and an electric one and it has certainly given me my life back. The manual wheelchair doubles as a walker, so I will walk for about 10 minutes and then my mom will push me for the rest of the time that we are out. Like you, I hated being homebound but I also hated what would happen to me if I tried to run errands all day without any help. Now that I have my electric wheelchair, I'll even be able to go to my week long church camp this summer which I am really looking forward to!

It was definately a lifestyle adjustment because up until a couple years ago, I never had to use a wheelchair. For the longest time I fought it because I wanted to be as normal as possible, but when I saw how much it helped when I did use it, I stopped fighting it. I've been using a chair for almost 2 years now, and I am still self-conscious when I go out. I'm always wondering what other people think when they see a normal looking teenage girl in a wheelchair. But, I would rather be able to get out and enjoy life in a wheelchair instead of being cooped up in my house watching life go by without me. My friends know that I have to use a wheelchair we when go out, so we always plan around that. And they always fight over who gets to push me. (Smile)

Since my house is relaitvely small, I don't use it when I am home. I want to stay as mobile as possible, so I guess you could say I use walking around my house as "exercise".

I know that this is going to be a tough decision for you to make, but you are a strong girl and I know you can get through it! (Smile) I will be praying for you and your family.

Amanda

[Sallysblooms]

I have two wheelchairs. One to keep in the car to use at large stores, doctor offices, one is inside, nice and clean.

A wheelchair is just a tool. Just like our blood pressure machines and heart rate monitors. It is wonderful to have it so you can go out and be with others, eat dinner out, etc.

It helps you save energy so you can heal. Also getting out is good for us.

I can go to church again, large stores etc. My hubby pushes me. I am much better now with my supplements so I can walk a lot more.

My hubby just went out and bought my 2nd one. I ordered the first one. Hubby took this pic of me "walking my dog." I cannot take long walks yet. The w.chairs did not decondition me, quite the opposite! I got stronger and happier. I have amazing treatment with supplements and I am doing great.

I hope you have a great doctor, it is very hard to have this....we understand....

[bkweavers]

I'm the mom of a 15 yr. old daughter with POTS. We've used a wheelchair only for short periods of time only because she never wanted us to buy one. I would rent one for a month at a time to go on shopping excursions or to movies. My daughter was unable to even sit up at the time so we had to rent a reclining wheelchair. I think if you are wanting one, you should go for it! You know what you can or cannot do on certain days so I don't think you'll become dependent on it. If you feel great one day, don't use it and walk. If you're having a bad day but want to get out of the house, use it. You know your own body and doctors don't know everything.

I'm so sorry to hear that you've been feeling much worse. My daughter became sick at age 10 and the first year was terrible. She was out of school all of the time and was unable to handle only 3 hours a day and that was spent reclining. If you can possibly get to school at all, I would recommend it. At your age, you need that interaction with your friends. Do you have a 504 plan or are you in special education due to your illness? If you absolutely cannot make it to school, have your friends over for short amounts of time. My daughter loved to have sleepovers and we tried to have friends over as much as possible.

I don't know very much about you and your symptoms but my daughter has improved a lot in the past 10 months. We just got back from Florida and she was even able to walk most of the time while holding our hand and even go on roller coasters. That is big for her since a year ago, she was so dizzy that she couldn't even sit up, walk, or stand on her own! There is a huge chance that you will get better. Our doctors told us adolescents have a 80% chance of recovering completely. It takes time and a lot of patience but we can see this happening with Liz. So hang in there. It's been over 4 years for Liz but we are seeing great results.

Another thing-you may need to get back into physical therapy. Liz went to therapy for almost 4 years before they finally graduated her. She still does exercises at home and works out. You do need to keep your body moving as much as possible.

If you want to get in touch with my daughter, send me a message. She would be glad to talk with you.

Take care of yourself and God bless,

Brenda

[lizababy]

I wanted to share with all of you a program that is an offshoot of the organization I work for (and, yes it is nationwide).

Infinitec DME is a Durable Medical Equipment exchange program. You can search available equipment for lending through the website, donate used/unused medical equipment and borrow needed medical equipment for indefinite periods of time. This is a fantastic program for anyone who is in need of the medical equipment (from shower chairs to walkers to even hospital beds) and is unable to either afford it or have it covered by insurance.

[bmahaney214]

I would just like to thank everyone for all their advise and support! We are all going through a lot and it's nice to know we're not going through it alone. I hadn't been on here in awhile and when i got on today and saw all your reply's it really made me happy! I think I'll try it out for a little while, if i don't like it than i will have to find another alternative, but the only thing we can do is take it one day at a time.

THANK YOU!!!