Ups and downs

My AVM ruptured in 2000 and since then I'm not walking- and I look really bad...

Until the last December my husband "walked" me but then he had his own health problems and for me it was a wake up call - learn walking or spend the rest of your life in wheelchair. Of course I chose option one, but home exercises were not enough.
On youtube I found a wonderful piece of equipment: ALTER G, safe treadmill, but the places with Alter G that I contacted did not want to see me or to give me the chance. ALL BUT ONE. David from St. Luke's PENNSBURG, PA agreed to help me. I have just returned from the third session- using Alter G! It is a fantastic experience! After almost 15 years I'm walking! It takes only one person who gives you chance to feel so great! Thank you David for believing it's worth it!

But yesterday I felt down. I wanted to have a dental implant a lady doctor refused to give me one because I had stroke and AVM. I don't know what to do now.
I felt down until I thought: I don't even like her. Why am I giving her powe to make me feel bad."

Only one person decides how you feel and that's you. But I'm so happy I have met David!

That’s the spirit stay positive and do what makes you happy…always remember us AVMers have dealt with more than most ppl out there…surgery is a huge thing to do and it’s not an easy thing to go through… God bless!

The Alter G is an amazing thing, isn’t it? It helped me to get out of the wheelchair, too. You have a great attitude, so keep on plugging! :slight_smile:

Hi! What a great shout out to a person who helped you. Mine ruptured 4 years ago and now that I'm not in rehab I have learned to identify and recruit talent for my Long Term Team. The trick is, as you point out, finding people who are willing to take a chance on you. I have been so blessed to find some extremely gifted practitioners who have helped me exceed all sorts of expectations. I will be loyal to them and their families for life. This is Coach R - the Trainer who helped me use the AlterG (I love it, too!!) even though he's not used to helping people like me (he trains pro athletes) - but he decided to do it anyway. While he was away training some athletes in another country I roped the staff into helping me make this video (click on the image) to celebrate his 20th year of service. He is good at many things, but I have identified the use of his imagination as an area of growth.

Most importantly, I just want to point out that you decided to walk after **15** years, and made it happen by seeking out an AlterG even though there were discouraging stops along the way. (Side note: I'm sorry to hear about your husband's health problems) A lesser person would have been cowed by that kind of discouragement. You get Major Props for sticking with it until you found the right place, and David gets a round of applause for taking a chance.

:) atnt

Yes, I am very optimistic and usually in a good mood. Might be very confusing for the " lesser" people who see someone in the wheelchair and want to feel superior but instead of humbly accepting what they say I reason with them. That doctor yesterday didn't want to talk with me because when she said I might have got a stroke I told her she might have got one earlier than I because nobody knew the future.
I hate such people!
they get you down IF YOU LET THEM.

btw I'm not walking normally yet, still have to hold ALTER G frame but it feels so great. I tried many places that had this treadmill but everyone either ignored my e-mail, or said 'no, after so many years it's plateau, or even met me but got scared to see I might need a constant supervision in the beginning. But not DAVID. You feel so wonderful when someone is willing to help you. I will do everything he will not be sorry for giving me chance. Really, now I want to get " normal" more than just for me.

(hi Ann! my real name is Anna)

It's great you met someone doing rehab who was willing to let you try the equipment you're interested in using, that's fantastic. Just like you had to do some shopping around to find someone with the Alter G treadmill willing to let you give it a try you might have to start looking for a second opinion on the dental implant. Is it just something your dentists doesn't feel comfortable doing because she doesn't have a lot of experience working with someone with your medical issues/history or is it something she thinks should never be done in a case like yours and if so why? Would she feel more comfortable if a neurosurgeon approved it, cleared you for the procedure? I've had to turn to my neurosurgeon to get letters giving me the okay to drive, attend physical therapy, attend vocational rehabilitation, go back to work, take pain medication and I can't even remember what else, probably more. Right now no one will approve a med change for me until my neurosurgeon okays it and it's not even a seizure or other big brain deal med. All this because some providers are just less comfortable than others when it comes to assuming responsibility for making decisions and taking on risk. Sometimes it isn't so much about how safe the procedure is as it is how confident and secure the provider is about trying their hand at it themselves. If your provider doesn't feel comfortable doing it then it's a good thing that she's telling you no. Better instead to find someone who does have experience with performing the procedure for individuals with a medical history, background similar to yours. If such a person exists,can be found and if not that should be telling, would be good to hear/know too. Doctors really aren't in it, this business thing called healthcare to deprive us of what we want. They want us to be happy they just don't want us croaking and our loved ones, friends and family suing their pants off. Which you know putting ourselves in their shoes is kind of reasonable when you think about it. You might also ask her to refer you. Is there anyone she knows with experience in this area who might be willing to consider it if she won't or could she ask around and see if any of her colleagues know someone with experience in this area? Dentistry is just like anything else - if it's really important to you, to your health, happiness - well being, then you owe it to yourself to get a second, even third or fourth opinion if need be.

you are right that she is scared of being sued - and she wants me to go to some neurologist first but it is just one tooth for which I already had 3 consultations by different doctors and-since it doesn't hurt just is very ugly- it will stay in my mouth until I'm old and ready for dentures.

I don't think I want to see this woman again. there are millions of people in the world, really you don't have to see everyone.

You seem to have a very good-"I can do this attitude"-good for you!
Unfortunately after my bleed my right side weakness remained permanent despite the therapy and effort so I remain wheelchair bound.But,I did regain about 90% use of my right arm and hand for which I'm very grateful.I'm a guitarist and it actually helped in my recovery of fine motor skills and I can play now nearly as good as most good guitarist'.
Through it all I found how important it is to have and maintain a passion in life-especially if it's something that continually challenges you.
My interest/passion in spiritual studies and development I credit as well as "inner" development is as important as well.
Anyway,keep up that "can do" attitude,hang tough...and God Bless!

Hi Danny, yes, do whatever interests you and do it with passion! Even when I do SUDOKU I'm 'all in it". I see that we can always improve, even years after (I improved a lot 14 ears after bleed!) and so called "reaching plateau" happens because we (subconsciously?) decide we have improved a lot, and we are good enough.

For almost 10 years before December I didn't improve much, I was quite ok with what I had. Everyone, myself included, was sure that's it.
But since December I have been improving again, because my situation changed, and I am not good enough anymore...
your right side weakness is not permanent either - 90% is a lot and probably enough. But 100% is possible!

Denny, very sorry for the typo in your name. I was in a hurry and didn't edit my post.Sorry!
Never give up! I am wheelchair bound today but not necessary tomorrow.
People have more power than they think. I have learned over the years that if you really want something it happens.
I'm not religious (but spiritual) but I met religious people who said something like if "at least one more person prays with you for something it happens"".

I would change it into "if at least one more person believes in you it happens"! for me that other person is David!

After so many rejections his willingness to help me is a true BLESSING

Hi, Anna! Your phrase, " I will do everything so he will not be sorry for giving me a chance," is *exactly* how I feel. My loyalty level is insanely high bc of the depth of my need. I try to tell my people as often as I can (after I "tested" them to see if they were really good) that their profession changed my life - and I love working with interns who will be a future generation of gifted practitioners. And you're right - no one knows the future - and thanks for the reminder not to let people like this get you down. I did some phone "interviews" when I started looking for a new AlterG. I got so mad at one guy I just "yes-sed" him to death so I could get off the phone and then I vented about it on my blog. PS. I've used an AlterG for 2 years and it has changed my gait (along with my two Trainers). It took time, but eventually, being able to let go and move my arms was incredible. I learned to walk 3 years ago and it's STILL not normal! But it's better, and the AlterG has been key. I am admittedly addicted. Keep on going! :)ann

Do you have a screen in front so you can see your legs? Helps a lot! I tried one without it and it was awful --my right side was numb( - actually the leg is almost ok now but I still need to look at it when walking).
And David says things like "place your heel first, or you may lift your right leg lower, etc. We see it at the screen.

you must be tougher. I was so frustrated with all these rejections I was even thinking about BUYING Alter G until I learned the price. 36 900!
I will need some referral though as I cannot use the treadmill without going to physician first. So ridiculous!

No apologies needed.
Like you I would call myself more "spiritual" than religious.Whatever,I just KNOW there is a higher power that governs all things and is pure Love.
Your positive attitude and determination inspires me.
Hang tough and may God Bless-which I feel is happening for you already.

I've used one with the screen (at my PT place near my sister's house in NC) and without (here at home in the DC area). It definitely help for me to see my left leg - this is the problem one; I have trouble sometimes keeping it within the width of the belt - but when I don't have the screen I concentrate on what it's supposed to feel like. I wanted to buy one, too, but then I figured I'd have to start playing and win the Lottery plus Daddy said I wasn't allowed to buy anything anymore (I'm a grown person, I promise, but I live with my parents and there is no more room for any other exercise equipment). My philosophy used to be, If it will help me walk, I'm going to buy it. This was before I became unemployed, and before we ran out of room :). Hey, to bypass getting a script for PT search the AlterG website with your zip code to find machines available for public rental near you. I do this for every city I visit. Most are for patients only, but public rental places are becoming more prevalent. But maybe that's not what you meant - you need to stick with David if at all possible, and it sounds like although there are some hoops to jump through, it will be worth it! If you are talking about getting medical clearance, I'm all for that! I used to send my "Medical Resume" ahead of myself stating clearly that I've been cleared to exercise so no one would be nervous :). I didn't get clearance at my last round in Fall 2014 but I discussed my reasoning at length with my Athletic Trainer ("barring a guaranteed consequence I'd like to continue") and he and my other peeps are monitoring me closely so I feel confident that I'm disclosing everything I should while they are watching out for signs of distress I don't have the awareness to tell them about. They are all medically qualified professionals and I have come to trust their opinions the most bc they know my gait best and see me (between the 4 of them) daily. PS. I'm quite sure I'm not tougher. I'm just meaner now that my social filter has been compromised via brain injury. It's a great excuse! bye! ann

The exercise equipment is here spread across the house (something to do everywhere!) but I'd rather see David than buy treadmill for almost 37K...

Besides, I just would see David (nothing personal, my husband helps there too! But I think David is very handsome and extremely kind).

one other thing I considered are ËNDLESS POOLS that could be set at home/backyard. Pools are great for gait and no public places here are for me.

(my right leg sometimes kicks my left leg when "walking". Surprisingly I find it quite funny!)

We are totally on the same wavelength, Anna - I did some serious research on an infinity pool when my insurance changed and I couldn't go back to pool therapy and my local pools wouldn't work out. Of course it was cost-prohibitive. But I have a fancy spreadsheet (I used to be a financial analyst) with options - but my sister talked me off the ledge. I have my own David - known as Trainer D (Animal Muppet, my personal Trainer). His wife, Smurfette, is my Dietician. They are a riot PS. She is a lot nicer than he is :). At first the giftedness was the only reason I tolerated him. Trainer D made me so nervous I decided to diversify my trust portfolio by seeking out an AlterG - happily, the Traffic Cop was Coach R. Now I prefer the AlterG to the pool bc you don't have to wear a swimsuit and get all chlorinated :)

I love your blog - and (thanks for good laughs!) I'm not done reading it yet. Very funny--but informative too:you are more advanced than I : you walk like a drunken sailor, but I'm the one who is too drunk to stand still....

We have one thing in common though (drinking?)-- it is the will to get 100% well.On the way to total wellness we have been learning and we are already too wise to be just a financial analyst (in your case) or microbiologist (in mine).

in Dc rehab they have a thing called ZERO G but I was (rightfully!) advised against using it. Have you seen it?

And tomorrow is Wednesday, my once a week AlterG! It would be great to have it home but *37K and ** I go there and have to use it--exercise equipment gets covered with dust here!