Dystonia is life changing! I am just at the beginning of a life long road and it is going to take time to adjust to everything. However just because parts of my life are no longer the same does not mean that it is all over and that it is time to give up. I need to recognise and accept that I am going to have down days now and then, where I grieve for the parts of my life I have no longer have. Yet at the same time I need to recognise the amazing things that have happened to me since the Dystonia hit me, such as the people I am in touch with, going back to riding, etc. If I did not have Dystonia then I would not have set myself a new life goal, I would never have even thought about aiming to compete at the Paralympics, but now that is something I strive to do.

It is going to be a long journey, and the beginning is always the hardest part, but you never know what is waiting for you round the corner. You only live once, you need to make the most of what you have!

In addition, I have come to appreciate this blog as it arouses me and allows me to savor the ever expanding dimensions of this new sexuality. By writing these events down I can ponder them as I write them and later consider how each sensual and erotic event builds on the previous one and allows me to deepen and expand my experience of sexual pleasure.

Last week was a week of unaided MMOs, Aneros inserted MMOs, and J giving me an intensely pleasurable hand job; the culmination of it all was me laying between J’s legs with my cock buried in her pussy as I humped her passionately. My love honey coated cock sliding in and out of her hot and hungry pussy induced a state of euphoria and aching desire that reached such a fevered level that when it crested, I spewed a ball draining rope of cum into her. The combination of events had my prostate humming this week. Clearly I have learned that the more I use my orgasmic apparatus the more it wants to be used. In addition the more I exercise my erotic mind the more erotically on edge my mind becomes.

So a few days ago at five thirty AM when I awoke with a raging hard on and a cock head that was twitching with need I didn’t deny myself the pleasure of a session. The warm sultry lady lying next to me seemed to draw me to her as well.

I remember a few years ago how I discovered the power of her warm sexuality to coax mmo’s from me. She was sleeping in a tee shirt, with her bare derriere exposed. I was not very adept at inducing pleasure waves yet; I had clumsily managed to get a few to happen already. I don’t know what made me think that my cock nestled in the loving warmth of her ass crack would make something happen but I decided to try. I think it was her alluring sensuality that seemed to silently call me. It was also that she loves to have me spoon her. I know from years of sleeping together she has gotten used to my cock in its prodigious hardened state pressing against her. But when I slid my steeled fleshy prod into the warm embrace of her cheeks, in the caress of her ass the mmo was drawn from me.

So this week just as then she silently beckoned me to her. As she lay on her side with her back to me I slid over to her and deftly placed my desire hardened cock in the warm caress of her derriere. I buried it deeply so that my cockhead was up against the divine warmth of her anus. This is as close as we have ever gotten to anal sex, and if it is as far as we ever get I am ok with it. It is exquisitely erotic.

As I spooned her I placed my arm over her shoulder and she instinctively grabbed it and pulled it to her chest as she would a blanket on a cold night. She is indeed always cold like many women and I am exceedingly warm, she loves my heat against her and the intrusion of a large stiff cock wedged in her ass crack is a pleasant annoyance that she has come to enjoy.

In a matter of seconds I felt the alluring sexuality of her anus sucking the bliss from my cock head. As it did I felt my prostate swelling and erecting and my own anus begining to twitch and reverberate as delightful pulsing waves rippled up my anal canal. The base of my cock began to tense and tingle preparing for the erotic reflex of an orgasm.

My hand caressed her warm supple breast, the sensation of which seemed to hasten to growing orgasmic tension deep inside my anus. I thought how amazing it was that I had become anally orgasmic, I relished the glowing pleasure that seemed to be filling my anal canal. I breathed into the pulsing waves trying to feed them the energy that they needed to sustain themselves. Like two hands intertwined under my foot as a boost to get me up on a horse my breathing put me firmly on the back of the waves of orgasms that were starting to build.

Then as the tension deep inside me reached an almost intolerably pleasurable level, the orgasm detonated in the tip of my cock head buried deep in her derriere. As it exploded it sent a rich thick wave of pleasure along my cock shaft to my penile bulb deep in the root of my cock under my balls. The base of my cock responded to the taunting pleasure washing through it with its own explosive spasm. That spasm caused a ripple of subtly different rapturous sensation to ripple deeply into my core. When that exquisite vibration reached my quivering prostate it triggered an intensely pleasurable pumping which in turn fed the growing pleasure in my anal canal. The entire chain of events fueled an inferno of unbelievably intense orgasmic euphoria. As the pleasure traveled down my anal canal it reached my anus where it induced an extremely hard convulsive contraction of my anal opening.

The final spasm of my anus filled my body with such deeply blissful orgasmic tension that it induced my cock head to respond with another explosive orgasm which started the entire process all over again. Over and over the sequence of detonating spasms, pumping pleasure waves, orgasmic echoes and subsequent pleasure spasms continued, with each one triggering the next one until my entire body was caught in the syncopated throbbing rapture that was inflaming my arousal and sustaining wave after waves of sheer bliss.

I stayed attached to her trying to hold her gently as I allowed the orgasmic assault to systematically work my cock, perineum, anal tract and asshole. I felt like a marionette whose strings were planted deep inside me. A wickedly erotic puppet master was pulling on my strings, tugging at my cock and anus and prostate coaxing them to respond to his will as he lustily watched me get overwhelmed with orgasmic pleasure.

For thirty minutes I clung to J as the assault mounted and redoubled and milked me. As riveting as the experience was, after a dozen or so waves it became hard to stay focused. The sensation of deep and pure ecstasy tugged on my sweetly aching anal canal and cock. I cleared my mind of all distraction and followed the alluring ecstasy as it sang it sweet song into me.

At six am our clock radio went off signaling the start of the day. However I really wasn’t ready to abandon the sea of rapture that I was floating in and stand on the shore of reality just yet. But I knew I must. So I rolled away from my sensual lady and lay on my back in an attempt to collect my thoughts and face the day.

However as I lay there mistress mmo refused to relinquish her control of me. Disengaged from J’s orgasm sucking anus, I was left on my own on the beach with nothing to stimulate my cockhead. I thought I was done but I was mistaken.

With wicked determination mistress mmo parted my ass cheeks. I could feel her teasing fingers stroking my anus, making it recoil in spasms of sheer pleasure. Then with sensual elegance she inserted her delicate finger into my anus, then another, and another, and another until I felt the hot penetrating tension of her hand deep inside my asshole. Then with agonizing persistence, she began to inch slowly up into my anal tract seeking the prize, my prostate. As she penetrated me chills of delirious ecstasy rippled through me, hardening my cock and stiffening my nipples. My nipples now began to crackle and tingle with sexual energy.

Then with inexorable determination she reached her goal and I felt her warm sensual hand of pleasure caress my quivering prostate. With cruel determination she then squeezed the juicy source of my pleasure and made it spasm in her grip. As I lay there a couple of feet from J my body stiffened in response to the excruciating sweet rapture that was pumping rapid fire deep inside my asshole. Then the sequence that moments earlier had started in my cockhead and rushed through me in a torrent, ending in my anal tract began again but this time in reverse.

The pumping bliss beep inside my anus detonated and rippled in a wave in the other direction towards the tip of my cock; when the pulse reached my cockhead it engulfed it with a fevered passion and sucked it making it pulse and swell; in response it convulsed in a mesmerizing pumping spasm as it tried to push non existent cum from my cock slit. The tingling desperation of my spasming cockhead sent echoes of pleasure back to my prostate inducing the relentless fingers of mmo to cruelly tease and taunt my pulsing gland to produce even greater levels of pleasure. The evil erotic puppet master tugged on me with a vengeance.

Then as I lay there in the storm tossed waves of an orgasmic storm, I realized our clock radio went off. I became aware of a lilting piece of classical music on the radio. With mysterious power the music caught my attention. I followed the rising and falling sweet notes of a beautiful piece of classical music. The melodious waves invaded my brain competing with mistress mmo’s ecstatic grip on the pleasure that was rising and falling and rising again inside me.

As the music demanded my attention it seemed to also demand the attention of the mmo. As I lay there helpless in the caress of orgasmic rapture, the mmo responded. The exquisite waves of pleasure began to follow the rhythm of the music. As the tempo speeded up so did the orgasmic spasms. When the refrain of the piece reached a crescendo so did the spasms of pleasure. When a piano arpeggio led the song to a transition so did the ecstatic convulsions.

As I lay there rigid with orgasmic rapture my orgasm became one with the music. The orgasm and mistress mmo seemed to embrace and dance together inside of me. I was being pulled around a dance floor by this sensual hand that was deep inside my anus tugging on me to keep time to the melody that filled the room.

For a full forty five minutes I felt the pleasure of the music deep inside me. My body ceased to exist. As the music filled the room, so did my ecstasy. Time and place lost meaning as I heard my orgasm playing sweetly in my ears and it milked my prostate with vulgar determination. It was singing to me in bewitching sweetness coaxing me to let go of reality and succumb to pure blissful rapture. I did.

It was almost 7 am when exhausted and aroused the radio shut off and fatigue filled my head. As the music abandoned me, so did the orgasm allowing sleep to fill my head and take over. I dozed off for another hour and woke up still on my back with J’s leg over my thigh and my rigid cock drooling pre cum onto my belly.

The week following this wonderful session has been equally erotic and sensual. I have more to share. I will share it in entries over the next few days.

Yet another page was written in this amazing sexy travelogue; I am fortunate to be able to experience these erotic experiences and write them for all of you to read and enjoy with me.

This is something which I have been discussing with my doctors and contemplating having done for more than 5 years.  With my increasing muscle rigidity and decreasing lung function since early last summer, the demand for a decision became imminent.  The need for it physically to benefit me was becoming greater and the window of opportunity for potential surgery was closing because of my diminishing breathing capacity.  The prolonged discernment came to the ultimate culmination.  If this treatment could make me less of a burden on my caregivers, with improvement in my muscle spasms and alertness, I was interested in making an effort to attempt it.

My husband and I had attended a conference on the subject, geared toward health professionals, given by neurologist Dr. Charles Horowitz at North Memorial Medical Center several years ago, and the results he had were impressive for people who had suffered muscle spasticity from traumatic spinal cord injury, cerebral palsy, stroke and multiple sclerosis.  The procedure was rarely used in people living with ALS, Lou Gehrig’s disease.

There was a good chance that the procedure and treatment could improve my ability to walk with less assistance.  There was also a high risk that my underlying muscle weakness would be unveiled, and my ability to stand and transfer now depend on a certain level of muscle rigidity.  At the time, I was managing standing transfers pretty well and the risks outweighed the benefits for me.  I was not ready yet, and I decided not to proceed with the therapy at that earlier stage in my ALS progression.

As my condition worsened over the summer and autumn, the Baclofen spinal pump therapy was brought up again as a possibility by my neurologists.   So I was referred to Dr. Horowitz for an interview and medical evaluation.  After our consultation with him, he was hopeful that I would be a good candidate for this treatment and recommended that I schedule a spinal test through the Same Day Patient Care Center at North Memorial.  For more in depth information on Intrathecal Baclofen (ITB) therapy, see the video overview at the Medtronic education website at this link: http://professional.medtronic.com/pt/neuro/itb/edu/about/index.htm

I had the spinal test on December 3^rd and they injected a small dose of Baclofen into my spinal fluid, under x-ray guidance in the Radiology Department while I was lying in a prone position ~ not comfortable for a person with my level of muscle spasms!  It only took a few minutes for the actual injection and then I had to wait for a few hours, lying on my back and side positions on a gurney, while the medicine took effect.  The nurse then monitored my pulse and blood pressure, and let me eat and drink a light snack of oranges, crackers and water.  I have hypertension and my blood pressure dropped from 140/80 to 99/56 during the recovery.  I did not feel lightheaded.  That was a good thing!

All went well with the spinal, but the Baclofen results were not what we had hoped for on that day. My muscle tone stayed high with minimal relaxation. However, when I stood up, my muscle weakness was revealed. I could not move my feet forward, sideways or backward. I could stand with assist, yet couldn’t even bend my knees or lift my legs.   The physical therapist, PT student, my husband Ed and Dr. Horowitz had to assist me with my walker and transfer belt, and then actually move my feet for me to get me three feet and turned to sit in my power wheelchair. What an ordeal and a huge disappointment!

Dr. Horowitz said that I would need about 4 times the Baclofen to manage my level of muscle spasticity.  Because I was already so weak with the test dose, I would not be a candidate for the Baclofen spinal pump therapy.  I was bummed.

I guess that overall I’m relieved not to need surgery. Everyone at North Memorial was great! My former boss when I had worked at North Memorial, Lisa, had made Ed and I a dinner to take home that afternoon. We also visited briefly with my former colleagues Leslie, Kitty and Mary in the Trauma Services Department.  We had met with former colleagues Linda, Wendy, Patty and Melissa during our previous medical evaluation.  It was so nice to have their support.

Back at home, it took eleven hours after the spinal injection before I finally got some mobility back in my legs! Yay! I did NOT like the feeling of ALS and Baclofen-induced weakness. It was very scary. My feet would slide off the wheelchair foot rest and I couldn’t move them back on my own. The feeling of helplessness was awful! So many people that I know living with ALS have to deal with that every day.  They are inspiration to me during my struggles.  Again, I realized that I am so blessed to have some muscle control!!

I broke down in tears later that evening at home.  I told my husband how frightening it was to lose so much function so quickly.  My ALS decline will continue to progress and eventually I will have to face this muscle weakness again without the possibility of reversal.  I can only hope that I will not have to cross that bridge too soon.  Within 24 hours, the next morning I was back to my “normal” level of muscle movement and spasticity.  Appreciating all that I had been through last summer and during this procedure, I was more willing to embrace my new lower level of function.  I can still stand with assistance to transfer and that makes me happy.

It is a shame that this treatment could not alleviate my symptoms and improve my ability to walk.  I am sad that it didn’t work for me.  On the other hand, I’m grateful to not have to deal with the risks of surgery, the hassles with pump management and more frequent clinic appointments.  The spinal medicine did not expand muscle control for me, yet at least I found the courage to try and now I know that I have explored all possible options.

 So now I will move forward, doing what I can to minimize my muscle spasms and keep my energy as healthy as possible.  I will continue with my medications to balance the benefits and side effects.  I’ll continue with Range of Motion (ROM) exercises 5 or 6 days a week with friends and family volunteers, as well as my home health aides.  I will use my standing frame 3 or more times a week to stretch my back upright for a half hour and spend some extra time bearing my own weight.  I’ll continue going to the Courage Center pool for range of motion exercises in the warm water and for some soothing whirlpool therapy.  All of this facilitates my ability to keep moving with greater ease and I will persevere as long as God will allow me to do so!

Blessings of Gratitude, Gae

All in all  it was a rather successful day out! I managed to get some jeans and some lovely new tops, and I managed to push myself for longer than I had expected. From time to time my mum did have to remind me not to over do, I think I got a bit carried away with having some independence In total I think I managed to push myself for about 40 mins!!!! This was a lot longer than I had expected. When I went out in my chair briefly the other day, I only managed about 20 mins, so this was a huge improvement!! It was a tiring but fantastic day!

I am going to go and see my Doctor this week, and see if he can suggest any medication that will help with the tremor in my right leg and talk about my ideas with him, and get his views on it all. I am also going to write an email to my consultant explaining to him the change in my leg and how it is affecting me and getting his advice on what to do about it, I shall also inform him of my ideas for treating my leg and get his opinion on that as well.

Today was exactly what I needed, some laughter, retail therapy and some independence. It helped me refocus my mind on everything, and see that although my leg is bad and making things really rather difficult, it is not the end of the world. I can still go out and laugh and shop like anyone else, the only difference is that I get to sit on a comfy cushion and attempt to tone my arms by pushing myself along at the same time!

On Sunday, January 6th, I stood up from my couch and was promptly pulled backwards and down, the result of a tweaked back muscle. I had been FaceTiming with my best friend and leaning close to the computer to see her pretty face. I got up to remove some potatoes from the oven and that small gesture was the beginning of a severe back injury that continues to challenge me even as I write this post … standing up, sitting down, standing up, sitting down.  (FYI, I almost wrote ” that continues to plague me” but that sounded too defeatist for an optimistic girl like me.)

From that small moment, a trip to the ER was born.  Speaking of “born”, not even during childbirth have I experienced that kind of pain. I mean it was breathtaking, heart arresting, word snatching, tear jerking pain. I’d never known its sort until I found myself screaming at 2:30 in the morning for assistance from my husband that neither he or Jesus himself could give. Fast forward an ambulance, some Dilauded (mmmmmmmm, Dilauded), and an MRI later, and I’m told that have a bulging disc. One that is pressing against (more like assaulting violently) a nerve. L4-L5. The beloved sciatic strands.

My wayward disc. Behave damn it!

I say to the doctor, “I’m too young for this”. She says I’m actually pretty old. Apparently this type of injury usually occurs between the ages of 21-45. Lucky me, I just missed the window by a year and 23 days.

I’ve spent the subsequent days in a variety of ways. For one, I’ve been off of work and mostly on bed rest, flat on my back, pillows under knees. Yeah, yeah, yeah. That’s fine for all of a minute, because if you know me, I gotta move. Hard to do with back spasms. Once those started to calm, I could sit a little. Stand a little more. And walk more steps than just the perimeter of our condo. Sometimes. See, nothing is entirely comfortable right now. If I sit too long, stabbing pain. Stand too long, numbness and pain. Walk too far, I call on Jesus’ name … along with a few profanities intermingled. Don’t worry. He’s used to it.

Comfort.

Discomfort.

I’m trying to learn contentment in either state.

(Wait. I need to move to my chair now. I’ve stood for too long and can’t feel my right foot.)

Okay, back to learning contentment whether in comfort or discomfort. Life has attempted to teach me that lesson in SO many, er, creative ways. Let’s face it, it’s a valuable ability to have because life is often unpredictable, unfair, and certainly uncomfortable. Lately, my yoga mat has been my teacher in that regard (not that I’ll be on that thing any time soon). Nothing like holding frog position with your knees splayed unnaturally open and thighs shaking uncontrollably to send you on a frantic search for contentment.

Contentment.

You’d think that would be easy for a free spirit like me to be cool with whatever. It’s not. Turns out that I do, in fact, like things a certain, reliable, steadfast way. I need it. I think …

These days of recovery, while productive, have not been ideal. Let me explain. Yes, I’ve been off work and, on the days where I haven’t been taken away on the wings of Percocet to the Bravo channel watching past episodes of Basketball Wives so I feel better about myself, I’ve actually been inundated with ideas for the sequel to my YA book, Charis. (Coming soon through Booktrope. Stay tuned.) I have!  Ideas that, to date, have alluded me. My muse can be such a bitch when she wants to be. Geesh. She’s SO sensitive. You think I have needs.

But, here I am, brimming with ideas with time on my hands and unable to write. Why?  Well, because I need certain things to be able to write, the primary of which is stillness. With my nerve buzzing the way it is, stillness has been hard to come by. I stand. I sit. I walk. I lay. Wash. Rinse. Repeat. Frustrating. Until it wasn’t.

I had to adapt. I have to adapt. We all do. Life changes.

Once I made peace with having no peace, I took my sexy, slim MacBook Air and wrote in my bed, at the table, in the tub (foolish I know) and from my back flat on the floor with my knees elevated to the couch. Okay, so I admit. That one was a little awkward. Still? I wrote. This is a good lesson for me, because there will come a day when I go back to work, a day that I’m looking forward to, when the challenge will once again be how/when do I write? The answer I have today, thanks to this lovely back injury, is however, whenever I can.

(Hold on. Time to stand up.)

I guess I’m writing this to encourage you, encourage me. It’s never completely perfect, is it? Things are never exactly how we want them. Because of that, it’s so easy to put off our dreams and our goals because there’s never the right time, enough money, perfect people, blah, blah, blah.

Look, just get on with your life. Do the thing you want to do. Create the thing you want. Live the life you imagine—even if it’s within the smallest crevices of what’s left of it after you’ve given your all to others.

We get to do this once. What are you waiting for? An invitation? Well, here it is. Join me down on my back as I reach for the stars from here.

Peace and Blessings,

Nic

I am trying to work out whether this tremor is a new development to my leg or if it is a development of a Dystonic movement that was already happening. You see, often when my leg goes into spasm, as the spasm is about to go, my right leg would shake like mad. The way I always thought of it was that my leg was shaking away the spasm, this sounds silly but it was a comforting thought, these tremors would last from to seconds to a good couple of minutes. I think it is likely that this new issue is simply a development of the previous tremor, as Dystonic movements do develop (get worse).

However this creates a whole new ball game. I know that with Dystonia, you cannot really forward think, as you never know what will happen from one day to the next. Nevertheless I find myself having to think forward, as I like to have some sort of plan in place. After speaking to someone with similar leg problems to myself and hearing what they do to manage their symptoms, I have had an idea which I would like to discuss with my doctor. I want to put across to him the idea of getting a knee or leg brace. I have previously used a splint for my hand spasms and I found this very helpful in containing the spasms and most of the time it prevented the spasms from getting too extreme. As this worked well for my hand, I think it would make perfect sense to try out on my leg.

I shall of course listen and take on board anything my doctor suggests, I presume he shall offer me some sort of muscle relaxant to help, and I shall happily do/try whatever he wants me to. However I think I shall really press this idea. After looking into it more, I have read about a number of people who have tried knee or leg braces and found that they had good experiences with them. I plan on waiting a few more days before I go to my doctor. I had originally planned on waiting two weeks before I went but I don’t think I can deal with the pain the tremor is causing for that long. The reason for waiting is so that I can go and say, this has been happening, I believe it is a development of a previous movement, its been having for X many days and this is what I want to suggest. For me, I think this is the right approach to take with my doctor.

Who knows what will happen, I can only hope that he decides to give my idea a go! Until then I am going to avoid moving around as much as possible, so that I do not cause myself any more pain!

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This was rather disappointing, as for the last few weeks my arm and hand have actually behaved rather well (as long as I am not cold), and I had reached a stage where I was not to worried about it if I was indoors. The only reason for my arm and hand going into spasm, which I can think of, is that the coldness of the shower gel on my hand, in comparison to the heat of the bath, set of the Dystonic reaction.

This seemed to then set the tone for the rest of the day. I attempted to get on with the day and relax, however my little Dystonia alien seemed to have other ideas. My leg over the whole day has played up, so I have tried to avoid using it as much as possible. During dinner my arm and hand again went into spasm, after I attempted to pick up my spoon with my right hand. This spasm then went on to last a good 40 or so minutes before relaxing.

However I am trying to think positively as this is the first time in awhile that my right arm and hand have played up. This is a reassuring thought, so I am not panicking to much. Today has reminded me that I cannot take the days when bits of my body behave for granted! I need to value each day of peace, as there is no way of knowing what will happen one day to the next!

I haven’t been so good these last few weeks, as my friends in my Facebook groups know. I am holding on, I am doing it for myself now though!

Blogging is one of the things that helps me keep going, and knowing that from my troubles I can’t help others.
To help family members, or carers, or possibly even some in the medical profession. To understand the hardships of not only the spasms, and the weird movements we have to put up with. Or the stares from people who don’t know about us, who don’t understand.

But to see that our minds can get so confused and mixed up, that we can get so low and depressed beyond anything you can imagine.
Where we get to a point we don’t know who we are anymore!

There is no way a “normal” person could imagine what we go through.
Not unless you live with us, care for us, look after us.
When we are twisted and spasming, cannot walk or move properly, to do even a simple task. To lay at the side of us in bed, as we sit up crying out in pain and spasming. Laying us back down, watching over us to make sure we are okay and asleep. Before you can go back to sleep yourself, if at all.

My depression is the worst, but I WILL get through it. Life is for living!

Small steps, slow steps.

No choice anyway today, as it has snowed! My disability won’t let me go fast

Always chance for a small joke or a wink somewhere folks.

Thanks as always, for reading and keeping me going x

As I am in a wheelchair, the volunteers had to be slightly inventive, as I could not mount a horse in the typical way. Instead, once I was on the mounting block, two of the volunteers lifted me by my knees, up on to the horse, so that I was sitting side-saddle. I then had to swing my Dystonic leg over the horse’s neck, so that I was sitting correctly. I was thrilled that I had managed to get on!!!! As I knew there was a very good chance that I may not be able to.

I then had 3 volunteers stay by my side throughout the lesson. So that if for some reason my dystonia played up or if I had a seizure, they would be able to keep me from hurting myself. I was expecting to only be allowed to walk in my first lesson, especially as we did not know how my leg would react. However I was in heaven, when I heard the instructor call my name and tell me to go for a trot!!!!! At first the trots were short, so that we could establish my strength, however throughout the lesson they got longer and longer. I could have cried with happiness. I have loved horses all my life, and started riding at the age of 5. Ten years later I had to stop due to injury. So you can imagine my joy at being able  to get on a horse again and then being able to do more that I expected!

I managed to do the entire lesson, which was incredible!!! To dismount from the horse, things had to get inventive again, as I was unable to do this in the typical manner. Instead I swung my leg over the horse’s neck again and sat side-saddle. Then with my arms wrapped round the volunteers, I let myself slowly slide down the horse to the ground. It was an amazing day! One that I will not ever forget. I cannot wait to go back next week for my next R.D.A lesson!

This is a picture of me riding Connie, just getting ready to dismount at the end of a fantastic lesson!

I also attended my support/research group last night. I really do love this group. It does a slight bit of meditation, free movement, discussion etc. To an onlooker, it would most likely look that we are all slightly crazy, however everything we do, I find leaves me feeling relaxed and peaceful by the end of the session. It was a perfect end to a rather heavenly day!

Yesterday I went up to London for an appointment with my consultant. I went prepared with many questions, and was determined to get everything I needed done. I left the appointment feeling very happy and relieved! My consultant had been extremely apologetic about the delay in getting back to us and the delay in administering treatment. He assured my mother and I, that this would not happen again, and that we were to email him if something else happened or when I needed my next lot of Botox done.

My main aim of the meeting was to leave with a care plan in place and to have received my Botox treatment. I was rather pleased, that instead of me having to ask for this, he brought the subject up himself. After feeling my Ormandibular Dystonia, he agreed to administer the Botox into both sides of my jaw. This lifted a massive weight of me, as I have stressed about this for weeks. It is a huge relief to know that in about a weeks time when the Botox kicks in, I will be feeling so much better!

My consultant has also referred me to a short stay physiotherapy/rehabilitation scheme at the hospital. In which they will admit me into the hospital for five days, and give me intensive physiotherapy/rehabilitation, they will also send me home with physiotherapy exercises to do. I am still on the waiting list for inpatient treatment on a longer basis, however the waiting list for this is a year-long. He is also referring me to one of my local hospitals to receive outpatient CBT, to help me deal with my Non Epileptic Seizures. The idea of this is to help give me methods to deal with pain, as my seizures are  triggered by extreme pain.

Another big plus is that he is more than happy for me to start riding at my local stables, which once a week hold lessons for the disabled. He thought it was a very positive idea! I am over the moon as it means that I can get back on a horse!!!  Hopefully (depending on the weather) I shall be having my first lesson later on this week, if the weather does not improve than I shall have my first lesson next week!

Yesterday was so positive, and has restored my faith in my consultant. I had gone to my appointment ready to fight to get treatment, instead it was all offered to me with out me having to ask! It is a huge relief to know that in 7-10 days time, the Botox will have kicked in fully and I will not have to worry about my jaw going into spasm for a while!

For me, simple is not an applicable word for this every day task. Most days my mother wakes me up to give me my first cocktail of medications for the day. I stay in bed, at the moment for breakfast, as venturing outside of the safety of my mattress is a dangerous move to make. When I eventually have to get out of bed, it involves me calling for my mum to help. Once I have managed to get to the edge of the bed, my mum takes one arm and my step-dad or sibling will take the other.  They support me/attempt to prevent me from falling as I try to walk.

At the moment when my right foot is forced to try and work normally, it fights back hard. Often winning. My toes curl them-selves under, my foot flips over so that the top of it scraps painfully along the floor. And then to put the icing on the cake, it will twist in unnatural painful positions, as it protests violently against my will.

For me, at the present time, getting up and moving is an exhausting task. One that fills me with dread every time I need the loo, or have to move to a different room. Each time I attempt to move around, I try to clear my mind from panic. I tell myself over and over again, that this time  it might just be different, I might manage to walk a few steps, like I was doing before Christmas. I fill my head with positive thoughts. However when my foot then starts to contort, it is physically and emotionally draining.

I wish the doctors could see me like this. See me at home, when I am out of my wheelchair. Where a small glitch in my brain makes me vulnerable in my own environment. Where I struggle to walk one step, where my family catches me when I collapse, where my family protect me from my surroundings when the pain causes me to have a Seizure. Where they could see that I need help now and not in a years time!

However I must remain positive, I must focus on the fact that before Christmas, I was slowly making progress, and learning to walk again. The fact I started to walk, reassure’s me that I will again. Until then I just have to suck it up and deal with it. I must be pro-active. So I shall blog , I shall write letters, and I shall make the doctors and the politicians listen. I shall make them understand just how life changing and debilitating Dystonia is and I shall make them take action! I shall not remain silent!

When I awoke this morning, I had a part frozen left side of my face.

I watched television in bed for a bit then my head started to really, really hurt!
I turned tv off and put my iPad away, then quickly laid back down.
I had a bad seizure which lasted about twenty minutes, then when it stopped and I came round my left arm was paralysed for half an hour.

My head has not been right all day, but have plodded on. We even went for a short wander round town, we can park in town in the disabled spaces now I have my blue badge

My left side has been extremely weak though, and my left arm has been spasming throwing itself about like its possessed!

Tonight I am very tired, just trying to stay quite and rest. I am going to bed now anyway, so I will definitely be resting

Okay, so good night folks and thanks for reading x.

My Basal Ganglia, however, seems determined to inflicted pain on me. I have lost count of how many times I have fallen over because of my leg Dystonia today. My foot flips over and my leg spasms backwards, or sometimes up in the air, and I end up on the ground. This means that who ever is helping me walk also ends up on the ground too. I think my leg has been so bad today in reaction to lasts night collapse. Due to yesterdays collapse and today’s many falls, my body is really rather sore. I feel like I am covered in bruises from head to toe. Tomorrow I plan on resting my body, to give it time to calm down, and to meditate.

Today, when I wasn’t falling over, I wrote a list of a questions for my meeting with my consultant on Tuesday. I want to go as prepared as I can be, so that the situation I have been in with him for the last two months, does not ever happen again.

The dentist offering this treatment added an anecdotal account by one of his patients.

http://www.thisisms.com/forum/chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic18706-120.html

“Cure for MS with a dental brace”.
As everyone else who is Dr A’s patient says “and the rest is history”. It took me less than 48 hours to decide that the article needed further investigation. I had two things wrong with me, MS and a jaw that dislocated. Maybe going to a dentist was a step in the right direction. For me, from then on everything fell into place. Filling in the medical history in the extensive questionnaire that Dr Amir provides, made me see the connection between my long standing dental problems (I’ve had teeth extracted from age 8 to “make room in my small mouth”).

At my first appointment in Putney, I burst out crying when Dr. A. scanned my medical and dental history and said the unforgettable words “you realise you don’t have MS, you just have a problem with your teeth and jaws?”

WTF? Really – so those lesions don’t count? Blimey. How can a dentist claim that someone doesn’t have MS, when he’s never even seen an MRI scan of the patient’s brain?
This is wrong, wrong, wrong.
I believe that a good orthodonist/chiropractor can relieve pain, but to deny MS exists?
This is also, mad, mad, mad.
The MS world is full of this bullshit.

Only 9 days till I see the neaurologist! Woo! Which is the 16th. I figure I won’t take any medication from the 13th to the 16th so he can really see the worst of it. My boyfriend is on leave so I won’t have to drive and won’t be alone either but I haven’t passed that idea by him yet. I know he won’t like it.

Today were going to run errands, I’ll do my yoga later on in the night; like after dinner. It’s going to be a busy day so hopefully it’ll be a smooth day too.

Wish me luck!