I’m so excited!!!
I recently went through a free trial run of a technology that could help me with walking! Albeit, at this point it’s gonna have to be walking with a walker. I have less balance and stamina then I’ve had in the past. These days though walking around my apartment would be welcomed, so boy am I hopeful! Some would tell me to “calm down”(I hear that a lot more than I would like).
I know it’s risky to bet all my chips on black. I’ve been doing it for years. One of two things happen. Either I get what I want or I end up sobbing in the bathroom. The latter seeming to be far too common.
Paying for this latest treatment seems to be the question now. Insurance or Medicare being the obvious answer, but I heard Medicare doesn’t cover it and my other insurance already denied the claim last year. It’s that I finally got a chance to actually try it out. I just need to work on my balance issues. I wonder if physical therapy can address that? I guess first I need to concentrate on one thing at a time.
You see I always stumble on these things that I think will be absolutely life changing. The answer to all my problems. I get so amped up. So ready to dive in full force. I’ve been like this even before Multiple Sclerosis was in the picture. But at least I get it honestly from my father. Even my sister has it too!
The product representative said the MS Society offers grants to help pay for this walk technology. Before I apply for aid I need to get a prescription from my doctor and ask his opinion on the device.
Meanwhile, please forgive me if I seem anxious. It’s because, I’m so excited!!!
I have been on Ampyra for 3 months and it has increased my walking time by a few seconds. not much, but It has helped a bit. Physical therapy helps some also. So using them in combination can only help.
Tammy thanks for the insight!
[…] is the highlight of my week. But as my therapist was assessing me for the new device I mentioned in a previous post, I got a chance to see my progress or lack there of in treatment. I felt a bit defeated because […]
I’ve had a similar apparatus for about a year now. I don’t wear it in the winter because of my worries that it will make it more likely to fall on the ice. Even in the summer I don’t tend to wear it unless I’m sure I’m going to be walking for a long bit on flat ground. Overall I’ve mostly used it as a muscle stimulator, though I’ll try using it again for walking this summer. Certainly you have to have balance issues taken care of before you can really use it. Luckily for me I was “liberated” two years ago and my balance (and fatigue and urinary issues) are much better than they used to be. My blog is at http://www.my-darn-ms.blogspot.com.
Ted, That was a bit of reality much appreciated.
Keep the faith, Try anything and everything within reason and SAFE. Because the day you give up hope is a day I don’t want to EVER see!!!. Insurance companies are what I call blood sucking leaches of the earth. Just keep trying to get them to help as much as they can. Use every avenue to get them to help. Use your Dr.’s to do everything they can also. We pay and pay our part they should do their part.
Remember you always have us. We are here when you need us and some days when you don’t need us. The song says LEAN ON ME, Do that, I am here.
Aunt Mary, Thanks for the support. It seems this may take awhile. Also thanks for the read!
Hey – I have seen this advertised in the MS connection magazine – and be excited honey – NOTHING beats a failure but a try!!!!! so if it works whooo hooo dancing with Nicole anytime I come down to LA – if it doesnt – you go in your bathroom and let it all out and I will be up here in Jersey crying in unison with you – then we blow our noses and on to the next – one thing that is for absolute sure-
Can’t Stop Won’t Stop (in my best diddy voice 🙂
I can’t tell you how much I needed that!
I think it was Churchill who said something to the effect of ” no matter what happens, don’t ever give up”. Unless someone has MS they have no clue what we go through so don’t give u trying to persuade insurers to provide a solution that may improve your/our daily living. My legs are starting to hurt and get very stiff so I’ll keep reading anything I can to deal with potential immobility. Thanks for providing this outlet for information concerning living with our disease.
Tim, Thanks! We are all in ths together!
I can relate Nicole, my latest research for miracle, hope is a wholistic dentist in Texas that suggest the removal of all mercury filings in teeth may have reversal effect on MS?
Anyone had this done?
Wow Angela I never heard of this one!
I was dx in 09 had all my filling replaced in spring 2010. Haven’t seen a difference, I still have MS. I have good days and bad days. We believe I had 1st exacerbation when I was 19 so guess I had those fillings (3) for a long time.
nikki, I’m glad you found your way here! I’m sure you’ll see we share a lot!
Excellent Nicole….this device is a blessing and you will be quite pleased! I don the Walk Aide, it’s been eight months.
Molly, I hope I have the same succes you did !
Nicole – I hope this is the answer you’ve been looking for. I’ll keep everything crossed that you get the financial assistance you need to make this dream a reality – and then that it IS the dream you’ve been hoping it is. All my best.
Kathy, I hope so too!
Has anyone here tried AMPYRA? The 2 neuros I’ve heard talk about it so far are impressive …. protein channel inhibitor …. I didn’t know our nerves need protein to send nice strong complete messages! Well, hell, protein leaks/sneaks out of those silly potholes … thus AMPYRA (can’t remember it’s medical name) … blocks the protein from escaping! My 10.75 (as she says) video’d me walking/wobbling before I started it, we’ll see in a couple of months how it’s working!
Yahoo! Any symptom support is worth it!
Caitlin, If my insurance would cover it, I would love to try it! In the process of trying to appeal it right now!
I was on AMPRYA ABT 2 YRS AGO….I saw NO difference…..I am SPMS so that could be the reason it didn’t seem to help me. I am on GILENYA, have been for abt 3 mos & I will probably discontinue in Feb, my 1 yr mark for this RX. I really am tired of all these “fixes” that don’t do a thing….maybe for those that are more midly affected, but for those like me nothing seems to HELP.
Kim, I’m right there with ya. Nothing seems to help.
I am sending all good thoughts for you. I hope this will make your life easier. It sounds so like the Bionic Man on tv. I just dated myself! Be excited, fearless, hopeful and strong. Lisa
Lisa, Thanks for the read. You should me now I’m suppose to wear braces on my legs but I can only bring myself to wear one for fear of that very exact thing!
Stay excited reach as far as you can! Love your can do attitude, being positive isn’t always easy there is always hope.
Looks amazing… wish the problem were in my feet!
Nat, I’m sure you have your very own problems! No need for more!
Woo hoo, let’s move forward with something quite positive and helpful! I cannot wait to hear of your new adventures Nicole!
Janet, I can’t wait either!
I was pretty excited about the Bioness, too. Especially since it comes from my second home, Israel. (“Ness” means “Miracle” in Hebrew). I asked about it, got referred all over the place from one doctor to another, from one physical therapist to another. None could agree whether or not I have foot drop. FINALLY got to a PT center and saw the Bioness with my own eyes. I’d been sent there to try it out. But when they saw me walk, they said it wouldn’t help me because I don’t have foot drop. Got fitted for a brace, but even after 2 years can’t get the hang of walking with it. Every time I put my weight on it, I fall over. Have had it refitted 5 or 6 times.
I’ll be very interested to hear how the Bioness works for you, once you’ve managed to get it. Thanks for your continued sharing of information.
Laurie, Interesting. Well I definitely have foot drop, should here from the insurance company by the end of this week. Sorry it didn’t work for you though.
Great news Nicole! Good luck.
Last year we had a rep for Bioness come to our MS Group. Amazing technology. They also had a program to help with the finances. Keep on the MS society and go for it.
I spend time each day on core strengthening exercises. I can not stress how important doing them as been for me. The exercises do not require any fancy equipment just me committing to doing them each day.
Believer in cortical remapping and exercise here!
I do notice that it seems a bit easier using my walker after exercise.
Nicole, I have had hope for everything I have tried for MS and just because it may not have worked like it did for others, I still had hope that it would help someone else out. It is called a “positive attitude” and good for you that you seem to have it naturally. Of course you are excited about the possitibilities and hope for the future. Having a positive attitude is a is a gift and doesn’t come naturally to a lot of people. Enjoy the advanture of the next chapter of your life.
Leslie, You’re right the day hope be comes a bad thing, we’ll all be in trouble!!
I usually tell people they’ll have to forgive me for being exited about something that could make life better, They have never walked my road and will never understand what we go through on a daily basis. I feel excited to hear about any new device that can make life better. Looking forward to hearing how it works for you.
John, Thanks for the positive re enforcement!
You’re not sounding like a commercial anymore than I am when I tell people I use the Walk Aide. Both are FES (Functional Electrical Stimulation) technology albeit via duifferent means. The BIONESS is nearly twice the price so tends to be the less popular choice. I wish you luck with this Nicole, I know the Walk Aide has been a Godsend for me.
Atheana, Thanks. Unfortunately the one you have didnt work for me.
I am so happy for you. Don’t worry about being too excited. It’s good to have a positive attitude when discovering something that will make life so much better. I also hear the words “calm down” all too often. But I try to remember that every knock is a boost and I keep going. I hope everything works out well for you. Keep us posted.
Take good care!
Arletha, You’re right I’ll enjoy this positive burst while it’s here!
I agree!!! Don’t worry about getting too excited! I used to hear this from my husband, but only because he was afraid to get excited after so many hopeful events began, and would fail. But hope is the biggest blessing and when you continue that hope with that excitement, I believe anything and all things are possible. And, on a side note, I have been able to prove that my hope that there would be days I could play with my daughter in spite of MS, have started. They may be gradual, and they may come in spurts, but the come! You keep that hope alive like fire!
Christine, I guess my hubby goes though the same thing. But don’t worry I’m going to keep pushing on!
Whoooo Hooooo! I think that device looks awesome! Last winter, when my right foot and leg gave out, I looked at those devices and they seemed really cool! I am sooooo excited you are excited! Nothing wrong with getting ramped up with enthusiasm! Last night my spasticity brought me to my knees, I made myself do my yoga and low and behold it kicked the spazzing down a bit. There is a really peppy English gal on youtube at multiple sclerosis 101 who does chair and wall walking exercises. I love her peppiness and I used her videos to ease myself into starting to “exercise” my body. Just a thought (I’m sure you get alot of “thoughts” sent your way)! Thanks again for your voice!
Hugs sent your way!!!!
PS~ I bought kale last night at the grocery store 🙂
Olivia, Which kind did you buy? The curly kind or the leafy? But more importantly how are you going to prepare it. I think I have seen the girl on You Tube! She offered some great advice on core strength.
I bought the leafy kind, I did not know there was a difference. I looked up a kale soup recipe I’m gonna try the Portuguese food network one, but modify it for what I have in the kitchen. Which one are you gonna try?
Olivia, Honestly I just boiled it with onions and seasoning and ate I’m going to try a Kale and beet drink tonight!
Stay excited, Nicole, and push the MS Society to its limits with the possibilities of a grant for you !
How exciting that this new technology could be sooo beneficial to you.
I will keep my fingers crossed,
Liz, Thanks. I saw this first on the Montel Show.
Please keep us posted as this is something which might also benefit others (me). And good luck!
Judy, I didn’t want to sound like a commercial for it, but it’s a Bioness 300!
Yes Nicole, physical therapy should help with gaining your balance. It was not to long ago that I too used a cane then a walker because of balance due to drop foot on my right foot. Then was fitted for a AFO ( ankle-foot orthotic ) brace recommended by physical therapy which is a custom fit brace and helped me while still using a walker.
The key to everything we need to control balance is to keep our core muscles strong. Use core-strength exercises to tone your core muscles, including abs, back and pelvis. Physical therapy uses many of these exercises to help strengthen those muscles. Research core strength which will help show how simple exercises to do.
I hope you will find this information useful. Also I was suggested use of the aide you mention and yes medicare would not cover that for me either so I never bothered and opted for the AFO instead due to insurance. Anyway, hope all works out for you.
Chuck, Those are great tips about the exercises. I even know a few of them and will get started as soon as I finish this!
So are you going to tell us what this new technology is or are we to be held in suspense?
Atheana, I just didn’t want to sound like a commercial for them but since you ask, it’s a Bioness 300. Check it out.