Dave what bit of the brain controls the puke reflex..Brain part 2.
Medulla Oblongata(myelencephalon): (it just rolls of the toungue!) Function: Crossing of motor tracts.
Cardiac Center. Respiratory Center. Vasomotor (nerves having muscular control of the blood vessel walls) Center
Centers for cough, gag, swallow, and vomit.Yey for the vomit!)
Cranial Nerves: CN IX - Glossopharyneal (Muscles and mucous membranes of pharynx, the constricted openings from the mouth and the oral pharynx and the posterior third of tongue.), [mixed]. CN X - Vagus (Pharynx, larynx, heart, lungs, stomach), [mixed]. CN XI - Accessory (Rotation of the head and shoulder), [motor]. CN XII - Hypoglossal (Intrinsic muscles of the tongue), [motor]. Associated Signs and Symptoms: Movement: Ipsilateral (same side) plegia (paralysis). Pupils: Size: Dilated. Reactivity: Fixed. LOC: Comatose. Respiratory: Abnormal breathing patterns. Ataxic. Clustered. Hiccups. (I KNEW IT! THERE HAD TO BE A BIT FOR HICCUPS!) CN Palsies (Inability to control movement): Absent Cough. Gag.
So you can see with the last two updates that include studies on the brain you can see area's where ms has effected you. Medulla Oblongatais my favorite part of the brain. Just saying the name of it and knowing what gives me the hiccups for four days makes me smile! There is loads of brain to cover but the past two days worth of updates cover the side effects that we will see before any other...Like loss of memory your sight, your hearing, your smell. I haven't even touched on the upper hemisphere of the brain but I am going to read about it because its very interesting! I keep on thinking....the numbness in my feet are being effected in the brain and if my brain is that powerfull to effect my feet...Ms is going to get a kicking when I work how to do it!
I didn't get any sleep last night and I am so tired. I am loosing tack of what day it is and that's worring. But thankfully my typing is getting better!hehe! The next mission is to investage how to re-mylinate my nerves without nanotecnology.(really small, microscopic, robots that haven't been invented yet!) I am not planning on leaving the house this weekend. I don't think this is a relapse or anything...there is no new symptoms with ms. I might have been working hard to understand all the medical stuff I have on here and making it easy and relevent to the ms situation. Hope you have found it helpful and makes some light on your own symtoms...And possibly on your last MRI results. What you have to remeber is that all your nerves in your body are going to be effected by ms and the brain is the control computer....We just have a virus and we can't re-boot to restart it!
Now I have to try and get some sleep! Hope you all are well! Dave
I think there for I am! I want to find out what damage has been done to me and why it gave me the wobble in my stride. Doctors have 5 year of education before they reach this part. I am not going to be getting the exact place in the brain where I have been effected(that's what MRI's are for!). I am no doctor and won't claim to know all the answers but I hope this will help. Self diagnosis in any field can only lead to more questions which should only be answered by a medical professional...That's why we trust them isn't it?
1:The Cerebellum Coordination and control of voluntary movement. This part of the brain I have heard being called the 'monkey brain'. The part of your head before it reaches your neck. Associated Signs and Symptoms: *Tremors. *Nystagmus (Involuntary movement of the eye). *Ataxia, lack of coordination.
This part of the brain works in combination with different area's to give you balance. The symtoms I have shown above are common with different many different diseases and I have only shown them to give you view of how complex this is going to be. I have seen a news report recently thant explained that dislexia can be caused by problem here.
2:The brain stem/Mid brain Nerve pathway of cerebral hemispheres. Auditory and Visual reflex centers. Cranial Nerves: CN III - Oculomotor (Related to eye movement), [motor]. CN IV - Trochlear (Superior oblique muscle of the eye which rotates the eye down and out), [motor]. Associated Signs and Symptoms *Weber's: CN III palsy and ptosis (drooping) ipsalateral (same side of body). *Pupils: *Size: Midposition to dilated. Reactivity: Sluggish to fixed. *LOC (Loss of consciousness): Varies Movement: Abnormal extensor ( muscle that extends a part). *Respiratory: Hyperventilating. *CN (Cranial Nerve) Deficits: CN III, CN IV.
Have you turned off yet? These two parts don't even make up a 3rd of your brain but do tell me so much about the working brain and the path way for electical impulses that control my body. This is why they have to have a neurologist to diagnose you. Remember that this is the basics...
3:Pons(A very imporant piece for me) Respiratory Center. Cranial Nerves: CN V - Trigeminal (Skin of face, tongue, teeth; muscle of mastication), [motor and sensory]. CN VI - Abducens (Lateral rectus muscle of eye which rotates eye outward), [motor]. CN VII - Facial (Muscles of expression), [motor and sensory]. CN VIII - Acoustic (Internal auditory passage), [sensory]. (a very important piece for musical appreciation! Thats where you feel bass on the inside of your head.) Associated signs and symptoms: *Pupils: *Size: Pinpoint *LOC: Semi-coma "Akinetic Mute". "Locked In" Syndrome. *Movement: Abnormal extensor. Withdrawal. *Respiratory: Apneustic (Abnormal respiration marked by sustained inhalation). Hyperventilation. *CN Deficits: CN VI, CN VII.
Still no where near a third of what your brain can do but I think it can show a couple of things that I need to look deeper into.........This is where I loose the fan base who wanted to hear about my diary. This is just a sample of what I am looking into.....I have just relised how much of my life will be missed if I continue down this path. Maybe a second blog is needed just so I can have a life and keep this as a seperate issue. Is this what you want to read or not? My brain hurts!
This next phase of ms is going to drive me nuts! Hope you are well Dave
Another night of being up till 4 in the morning!Warning do not read unless you older than 18!
Sorry but there is going to be swearing in this update....I think I have the right!
Ms doesn't suck!
Its Monstrous Shit!
The past two nights I have cried myself to sleep like a baby girl! I have been in server pain and can't get comfortable! I stare at the ceiling or the inside of my eye lids with tears streaming down my face. I used to be a man at the age of 30 and now I am someone else in 90 year olds body. My girlfriend is leaving for the rest of her life to live with her parents. They need her more than me and I don't want her to stay to see me get any worse than I already am. The needs of the many outweigh the needs of the few. I understand that...Its going to break my heart but I understand and won't question the thought behind it.
What has she got to stay for anyway. I am already disabled and require help. She won't be able to hack the next step with this disease. Its going to be a massive achievement for any human being to go through and I don't want her here to see it. She will have enough shit on her plate with her parents being ill and all. I love her and want to spare her of seeing what ms does to me.(that sounds familiar...Didn't I say the same thing when I broke with Sinead?)
I going to need to concentrate on what I am going to do next. Its going to be hard for me to do. I have been reading so many medical notes on ms and current therapies and I want to look into neurology and combined sciences, biology and chemistry. What they have done so far and what the next step is. If I am ever going to be in love like this again I want to know there is going to be a future in it!
I am not looking for sympathy. I am not looking for the 'sorry Dave' it not going to happen. I want to get my life back. I want to be able to love again with confidence. I am hurt and want out of this ms hell. Jen will be the second woman I have loved and lost during the 2 short years of this disease. Its not going to break me any more. The whole speech of "its better to have love and lost than to have never loved at all" is ringing in my ears as I start the hardest battle that I have ever done with ms before. There is going to be some heavy medical work done here and I will show all as I find it here. My neuro may have taken me off all my med's but I am not going to except that this is all they can do!!! I am not storming back into the hospital and demanding they give me something!!!! That just pointless and will just confirm what I already know. There is no cure that will give me back my legs and the woman that I love. If I was abled bodied I would be chasing her down south to look after her family aswell as her. That's what packs do, we are animals after all.
I just feel that modern doctors may need to look at all possibilities and there is something missing from all the reports I have read. Maybe a new fresh look at what they are doing may bring something up...Something they have missed to get us all back on our feet and working again to a better furture for us all. I will be looking at ms from the begining again with chemistry and neurology rolled into one. Just to show the laymans rule book so you can read it in English and not have to have a degree to understand the terminology. Tomorrow morning(after some sleep!) I am going to start with the control mechanism for the human body and my messed up CNS(Cenral nerouse System). The brain. The emotional effects and illnesses linked to different area's in the brain with there phyiscal attributes. Where do we get the symptoms from for ms a how you can tell what damage ms has done to your body already. All of this without a MRI scaner. This will get my mind of the fact that I won't see Jen on her birthday(8th of Oct 2006! Her choice). I have to warn you the reading of my research is going to be hard work and I have done research so far that will shock you but hopefully give you a better look at what 'your' doctors are doing for you. Its now 05:30 and I am starting to feel tired...Its about F'ing time! It about time that I got seriouse on ms, Its been seriouse with me from the start and I am sick of it. Its now 05:40 and I am really angry at ms!
The girls came: Very polite and I hope I helped them with there studies. I really hope that I didnt scare them with the reality of ms either. Dave spreading the word of ms in my own small way..And I made them smile too! They thought I was about 27 and they said I looked young! Bless em!
Acorda Therapeutics, Inc Fampridine-SR is a sustained-release tablet formulation of the investigational drug fampridine (4-aminopyridine, or 4-AP). Data collected in laboratory studies found that fampridine can improve the communication between damaged nerves, which may result in increased neurological function.
The thing about this drug that has shocked me is that its a pill!!! Yey! The improvement in walking is also something that raised my interest.
If you click that quote it will take you to www.msrc.co.uk. I liked having the 3 phases explained rather than have to go through them after a flare up. Do you know what they are?
1:To show that there were significantly more responders in the Fampridine-SR treated group than in the placebo group, as measured by the Timed 25-Foot Walk, a standard neurological test. A responder was defined as someone whose walking speed on the Timed 25-Foot Walk was consistently greater during at least three of four on-drug visits than the person's fastest speed on any of the five off-drug visits. 2:To demonstrate statistically significant improvement in walking speed on the last on-drug visit for the Fampridine-SR-treated responders compared to the placebo group. 3:To show that responders reported a significantly greater improvement than non-responders on the MSWS-12, a self-rated assessment of walking disability. This step was meant to validate the clinical meaningfulness of consistent improvement on the Timed 25-Foot Walk.
My dad, I learnt music appreciation from him...He is so right!
Crossing the Akashi Kaikyo Bridge in Japan to the guitar laden classic 'Ur' by Steve Tibbetts. The Akashi Kaikyo is currently the world longest single span at 6,532 feet, connecting Maiko in Kobe and Iwaya on Awaji Island as part of the Honshu-Shikoku.
A beautiful piece of music and a great video. I would have missed it if it wasn't for my dad!(in more ways than one you idiot!lol) My dad rocks!!! He always gets the WOW factor when it comes to music! Love ya dad! This will make you laugh, I ran spell checker ove this update and it stopped over Tibbetts and gave me diabetics.
I got two hours sleep last night(lay there looking at the clock!) and slept through my alarm clock so I missed an appointment with my physio. I am going to have to do some crawling there..and streches and lifing weights and leg exercises. I hate being sick. I need my beauty sleep. I get more and more ugly every day. I know its stress/pain thats keeping me awake. I might have to cut back on coffee too, but I will be back to "normal" by the end of the week.
Just got off the phone with my physio and she is ok with it and understands.Yey! Just going to take it easy today and stay awake till 9 tonight to get my body in the right sleeping pattern. And I havent had a beer for week either!
Hope you are all well Dave
*****News flash!!! 16:30 Just got a call from my doctors surgery asking if I mind if two girls came round to discuss my ms and the effects it has in my home.Medical students have been refered to find out what ms is. It supposed to be a home study My home! OMG! I have nothing to wear!lol! I think this is my gold star for telling people what ms does to people..Dave raising awarness!I can't think of any questions to ask them! Can you? (Evil Dave is screaming at my inner monologue to ask for phone numbers!BAD DAVE BAD to much Benny Hill as a kid! What can I say!!!!)
****Al Green:Take me higher**** Armed with Claire my wheelchair, I went to the shop and got in a large shop!!! I didn't think I could ever do it but now I have I think I was worried about nothing. I got the bus.....For free!!!! There and back. I went on my own and people paid attention to me. No one person asked what was wrong with me! I think I have found the power of having a wheelchair. I was told "your so brave" once but I just laughed and replied "What me!". It was an amazing experience. To see the general public and there reactions to me was fantastic. Lets have the break down:
Getting across the street to the bus stop was....Interesting! I just took my time and waited for gap in the traffic(which was fine as I was sat down!) and crossed without causing a accident. I waited at the bus stop with a very cute young lady(who had a lovley bottom!) who helped the bus driver raise the frount wheels on Claire and get me on the bus. They pushed me to the disabled space and helpped me apply the brakes. I put my hand towards my pocket but the bus driver had already left to go back to the cabin to drive.
I pressed the button to stop the bus and was helped of at my stop by another young lady...She helped push my chair up the short incline to the enterance to the shopping centre. I didn't ask her and didnt relise she was pushing untill she started to talk when I stopped pushing myself. She said "Are you ok from here?" I said "yes thanks" and she went about her her own shopping. I love the ground in there..Its so flat and easy to used with the new centre of gravity.
I went to a news agent and bought a lighter and ciggeretts. I went to the freezer shop and bought food for the rest of the month by getting a basket and resting it on my lap...Mental note to everyone:Dont put freezer food on the bottom of any bag which you carry on your crotch(Frozen nuts and all!lol)
When I paid they asked me if I would like it delivered as I had spent over 25 pounds. I added chocholate and said yes. The journey back was exactly the same but with different cuties at the bus stop. I dont know what I was worried about at all. I guess getting up ealier in the morning does work. My next step is the pub on my own! I need money for that tho!hehe
Good mood today and I am so proud of myself. I have to thank Michelle(Alaska) for her quote on her blog that reminded me to 'do it anyway!'. Thankyou your a star! Is there anymore? Hope you are all well! Dave
I only ever put music on here which I love and care for. I will be singing till the day I die with tears in my eyes and emotions running through my body. I know for a fact that I feel honor to promote each artist in my small space in the internet. I am not doing it on mass like TV or cinema. I am not a great source of influence with the government. I live on my own and find music IS a large part of my life. This is a diary! My diary! If it offends.....I am sorry but you have the choice not to read it! We all have freedom of speach. I love music and think it should be free to to everyone! I am sure that every artist out there would be happy with the free promotion because thats what I am doing....That being the case...Just in case....I am not going to do anymore more music on here unless it is done by people who want it here...there is always the unsigned listing.
That sucks that I can't have the freedom to report who I listen to....Blogger.com Myspace.com, Audiocodes,youtube, videocodezone all have the ability to PLAY tunes but they podcast side of the internet community have regulations. Kind of smells like the FCC(Federal Comunications Commision USA) have the same idea!......Maybe I am just wrong to make people feel better with ms.
They haven't approached me or anything. Its just after charles comment I have been thinking about it alot.(Watching Pump up the volume doesn't help Dave!) But the possibility that I could be charged money for the things that I have done scares me. The possibility that my family might be held resposibile for my actions scares me. so now all I have to do is deleate everything from my blog that caused any infringment of copyright from my blog just in case. Well while I do that please watch this talking about Youtube and the legal aspect:
Arrest myself! The reason we get away with it is that you can break down the entire internet to get to charge everyone for there copyright infringement. It would cost too much just to look for people who would,are and will do in the future. Its a free space for us to record our feelings. Ours just happens to be ms related and I think making people aware of this nightmare that we live is a good thing. We are making a good thing out of the bad that is on here. The invisable disease being loud and proud to be alive.
I am not trying to start a revolution or anything. Just to tell you we all have a voice. We can still talk and type. This is the internet and its yours.......dont regulate my feelings and thoughts. You already control everything else in my life and ms is taking the rest of it! If anyone sells my blog....Not that it would happen....I just want to make sure they have the sound track! Do you think I should stop music on here? Your comments will not be regulated!
Just rember you have feedom of speach and the freedom to turn off whenever you wish! Hope you are well Dave
*****limp biskit:Make a bridge******** You know when I start an update with 2 links I am trying to hide what's going on in my head...Well if you didn't, you do now. I am sick and tired of how my mental state is... I have given my mum my application for housing near the family and I am awaiting feedback from the association. Its the hardest thing that I have done. Its a sensible move as having the support of my family a friends is very important to me. It does mean so many things.
1. The Jen situation.. Being in Manchester means she 'could' visit as the public transport to get here is great. Rail, Coaches, Airport and motorways all link through here. Its the centre of the country and she could get here from where ever she is. I know that the relationship will end when I leave and finding a real girl like her outside the city that's not married or attached is mission impossible(or improbable). I met Sinead there for gods sake!
2. The medical field.. Some of the best research for ms is here in this country. Some of the best neuro's are here and most of the training is done here. Even when I move I will find that I will have to come back here for treatment.
3. The job/Emma situation. The possibility of me returning to my old job is gone. It will effect the money issue(and I don't know how!), the savings plan I have release the payment check to my address here in Manchester.(I know how to get it delivered to another address but that's hassle I don't need!) If I move and my wages stop and in turn may invalidate my savings plan! I will never 'bump' into Emma again and will loose any possible contact with her. That just sucks. At this moment in time its like a kick in the nuts that she will never be a friend again.....There is always a possibility the we could meet up here in Manchester..I go and that possibility is gone! Its a regret and I need to cut back on them don't I?
4. Live music/Concerts/Live events. Being in St Annes cuts down on the possibility that I could go to any. I would have to travel to the nearest city to go with a family member. I love them all and it would be great to get some of them out to a gig but it wouldn't be the same without Jen dancing next to me! That's just the icing on the cake. I know that friends up there will be able to go with me, But I would like them to be there on their there own merit and not feel like they were 'taking me'.
I know its new and exciting and I should be happy to go just for the amazing support....But these points are out weighing the benefits at the moment. Maybe its my lack of cash that causing the low....No it can't be fixed with a cash enema. I just need some time to work it out. Having weekend to myself is not helping. Just need to build a bridge to the happy side of life again.
Hope you are all well. Dave
P.S 2 New additions to the blog roll Michelle(Alaska) and Charles(Charles has a podcast too!) I wish we had met under different circumstances but you are both welcome.
Recieved a letter from the hospital with regards to my visit to see my neuro...it says this: ********************************* I reviewed this gentleman in the ms clinic.
He feels that his walking has gradually deteriorated in the last twelve months. There have been no episodes suggestive of relapse. He has some aches and pains in his limbs but no dramatic new symptoms.
He is waiting to see the Phsiotherapist and I am sure this is a good idea.
In clinic today he compleated a timed 25 metre walk in 25 seconds without assistance or aid and went on to walk a total of 50 metres before he had to stop and rest. Ordinarily he uses a wheelchair to mobilize or walks short distances with one stick.
Opinion It seems clear that there has been a gradual deterioration in his walking and balance. We have agreed that the right thing to do now is to stop the Copaxone. At present, there is not an alternative disease modifying treatment that will be likely to be benificial to him and I have explained this to him today. I dont think there is anything else specific that will be helpful at the moment but I have arranged review for twelve months time.
Dr J P Mottershead Consultant Neurologist
Wierd eh! The cry of 'We dont know what to now!' rings through the halls. I view this as a great letter. From a person that has ms....I think it shows that hospitals dont have a cure yet. Which is what they tell you at the begining. BECAUSE THEY DON'T YET!
I am happy that they have got me to a level why I dont need to jab myself every morning and fill myself with drugs. There are a lot of people out there who want to get a better form of life to what they have..... I am still in line with the rest of humanity. its just that our line just moves slower than everyone elses and we are trying to jump back in thier line. The search for a cure moves on still!
Oh second letter was from work to say that they are going to increase the money I recieve following medical review. Well...I still have ms and if I find a way where I can return to work I will. But am I still ill....YES!!!!
That being the case...You know I am going to look into it. Well...Tom Petty:Amazing grace ****Tom Petty:Amazing grace****** Nicotinamide Vitamin B3 Chemical name:Pyridine-3-Carboxyamide Molecular formular:C6H6N2O
Nicotinamide is one of the two principal forms of the B-complex vitamin Niacin. The term Niacin is used as a collective term to refer to nicotinamide and nicotinic-acid. Nicotinamide, via its major metabolite NAD ++(Nicotinomide Adenine dinucleotide) is involed in a wide range of biological processes including(and I love this!!!) the production of ***energy***,the synthesis of fatty acids, cholestorol and steroids, signal transduction and the maintenance of the integrity of the genome. Nicotinic acid in pharmacological doses is used as a antihyperlipidemic agent...(A 'what' I hear you scream!. All you have to do is break it down 'anti' 'hyper' 'lipidemic'). It also causes vasolilation of cutaneous blood vessels resulting in a 'so-called' niacin flush. Nicotinamide in pharmacological doses not have antihyperlipidemic activity nor does it cause the Niacin flush. There is evidence however that Nicotinamide in pharmacological doses may prevent type 1 diabetes millitus. And interestingly enough, pyrazinamide, an important drug in the treatment of tuberculosis, is an analogue of and shares the same biochemical mechanism with Nicotinamide!
So maybe looking into herbal remedies is the way to find a treatment for ms. I already feel the benifit to taking Ginko Bilboa so whats another pill in the morning. I am going to get some as soon as I get some money. Thanks for this PP!
My little baby is well again. Yes I have a name for her too! I love being able to get up a put a tune on that I was dreaming about. This morning I put on Alice Donut and sang along to the great tunes from the Mule album with a cup of coffee. I feel so happy, its a great day!
Here get some of this great guitar playing: Alien Chase On Arabian Desert:By Al Di Meola Just some other music in my/dads collection!!!!! I know today is going to be filled with playing the drums with two pencils and everything that makes a noise as my drums. I know I am going to get so much work done over the coming months but today I am going to shake my disabled ass...........I HAVE MUSIC!!!!!
Now I just have to get my webcam back. Tut! There is always something isn't there! But I dont care I HAVE MUSIC!!!!!!
Sorry back to work....NO I HAVE MUSIC!!!!!
You better go....see you tomorrow!lol Hope you are all well Dave
I had the electrition round to fix the door bell(its about time!) but he always say's "Hi" when he comes round. We both have great repect for people who play guitar and Led Zepplin so we have loads to chat about. He told me about this guy who is playing on friday in Manchester and suggested I check him out. The guy on guitar is called Joe Bonamassa...
Gob smaking...not even his guitar! But check him with his band,Joe Bonamassa at Montreal Jazz Festival
God like! My PC is still being updated with software and I am moving my music so I will get back to normal service soon......Wait a second I do this for me....So you will just have to wait.lol
Hope you are all well Enjoy the tune Dave
P.S I still haven't been out on my own with the wheel chair, My niece calls her Clair and I think 'Clair the wheelchair' works for me, I will do it this week! Oh and I got to the pub over the weekend with my little brother, just for a couple, it was great!
I am not working to full capacity yet but I am back. I have to get my webcam/mic back up and working but my PC is back online. I have lost all my music and have to rip them again but I have loads of space and will take the next few weeks to get it all back.
That my PC is going to be out of action for a few days as its being upgraded at the moment(New hard drive being installed to make the holding capacity 240 gig in total!yey) and I will have to re-install the broadband supplier once I get it home. The whole phoning around to get passwords will have to be done on Monday morning.
But I do have time, while at parents house, to say hi and give you some things to read.
That hardest thing I have to do today is to shower and I have already done that. I just have to relax and enjoy the day. I haven't yet been out on my own with the wheelchair but I know I want to give it a go over the weekend. There will be a time that I have to get away from the "Dave get your hair cut" and "When are you coming back to St Annes?" statements that always come out. Its because they care I know but I still have the ability to get out for a smoke and now I can use the excuse that I am getting excersise on the wheelchair.hehe! I really can't wait to see everyone. The last time I was up there was for the jump and that seems like years ago.
****Pixies:Crackerty Jones***** I know I will get in a bad mood with everyone if I dont get to go out. I won't be Crackerty Jones as my brother will keep me company....If only I can get him to take me to the Pub for a drink. It would have to be his round!lol! I hope my older brother and his wife got back safe on Wednesday. My family run on th e premise that 'No news is Good news' so I guess they are safe. See'ing the kids too will be a blast with wheelchair. I have a mental picture with them climbing on my knee while I push. One more sleep!hehe
Is there is always a down side! I am knackered. I am really tired at the moment and that can only mean one thing for me. Its giving me lots of time to reflect on what my future holds...I know the future is not set in stone and is not predetermined but I still worry! Do I need constant 'up time' to survive this? There is the thought there all of the time. I think I would have to win the lottery to get rid of this. So I best not worry too much. My life pathway is determined by this disease.
Well think of it this way...
I am going to live in St Annes near my family and until my debt is cleared I wont rest on this issue. I don't want to give stress to the ones I love. They will look after me, care for me, be there for me but me being me, I think they have enough stress on there plates without me.
Who am I to ask for help that I am going to need? I don't have to go there yet and I have some time before the 'ball' starts rolling on this but it will happen.(its all balls when it comes to me isn't it!) I have lots of time before I go! I am going to enjoy every second I have with Jen that's for sure. I love her. If I go to St Annes....That finishes. That stops. That will kill me. Well not kill me I know but it will be hell without her. She keeps me sane and reminds me that there is good things that happen in life. I need to hold on to things that make me feel like this don't I?
Recovery is the time between celebrations. I don't celebrate being run down but I'm looking forward to the next boogie!
Today is going to be a day of recovery and I am going to save my energy for the weekend. My family need to see me happy to. Stress and depression is rife but the norm in theses cases so do bear with me. Its going to last till I see my mum! Its warm today and its not helping with disablment. Need some music to day:
"I Ain't Dead Yet, M*therf@ck%r!". God rest him! Most famous guy who is freed from the ms hell that he had! I think we all have something to learn by his footsteps.
That being the case I think I have had my 3 lucky bits this month. Well good luck comes in three's.
1. Neuro took me off Copaxone and will arrange the next step for me soon. I am waiting for the next prescription and therapy when he decides to administer it. I have been doing copaxone for a year now so he thinks a change drugs might be good for me. Anything without injection will be fine by me!
2. Nizlop! Fantastic night last night with Jen the dancing godess. Live music when it is done by artists such as these two guys is always excepted with open arms! Sang, chair danced (they gave me a chair!)and I loved every second! Jon(double bass player!) might have convinced me that I want to learn how to player it! We heard the silent bob of the group talk(for a couple of seconds anyway!lol)and play the best bass solo I have ever heard. Beating the side of the bass with his ring finger and beatbox'ing while Luke kicked in with his guitar to a rhapsody of musical pleasure. It was amazing to get my disabled ass to another gig! Thankyou Jen you are the best!!!!
3. Recieved a wheelchair this morning and Jen helped me get to the shop. I get some freedom and I think I could even do it myself with the right excersize. Its a beutiful machine and I have to think of a name for her. Any idea's for a name for my chair?
Breaking the rules already...how goth!hehe Now for recovery eh! I am going to my parents this weekend so I will have to open her up and show off(No tricks yet tho!). I feel so happy and alive and I need to keep this good vibe feeling going for a while. Roll on the next month of good things......all three of them.
As long as we remember the people who died we will have learned something. Its if we can stop it happening again that we will know we have. Just a thought for all who have been effected before I go on my own challenges of everyday living. I will give you an update with any news that I get from my nero later today. Just to let you know that I haven't forgotten!
Hope you are all well Dave
*****After the Neuro appointment********* I saw the doc and I was very happy to see him after the wait for the ambulance. The journey was a nightmare! I love people who live in manchester but there is something about a certain group who just wind me up. I think you get them everywhere. The moaners,the people who want to know everything about you when they have just met them. It just might be people who have to go to hospital and they are nervouse about going. Anyway I digress....The nero has taken me off Copaxone. Didnt give me an option just said "I am going to take you off". So I am medication free!!!!Yey I think! I get more space in my fridge as I wont have to store injections.
I know the next step for me is to get used to the fact that it is going to be a life long disablement. Yes it going to slowly get worse and I can slow progression with physiotherapy and excersise. Now its my work.....OMG! I know the drugs I have advertised are for flare ups of the disease but they do help with getting yourself to a managable area of being disabled. I cant believe that I am here. I have made it to this point. My next appointment with him is in 1 year. He did agree with me that PMA is the next step..He said "Well done keep up the good work!" It can work! I still have ms ofcourse and I am not cured of it but I think I can do this life and thats what counts......isnt it?
This is the best news I have heard for ages so please be happy for me. I am still going to fight on to find a cure. Now I can concentrate on looking after my friends and getting my life back on track. I have never had an urge to have a beer more than now. Maybe getting back to work is the next step. Live music tonight is going to be a great help! I cant wait to see Jen and tell her the good news! No more Copaxone!yey! Apocalyptica-One
Jen left this morning....boohoo! She will be back tomorrow for the Nizlopi gig!woohoo! Bank rang this morning with regards to my loan not being paid....boohoo! Sorted it out with them and they are happy, found out how much I will be getting from the savings plan and relised ALL my debt will be paid off before chirstmas.....WOOHOO! I will even have this christmas paid for too with the extra left over!
My sister came over with her hubby today and they FED me! Massive bread stick sandwich followed by choclate chip muffin. hmmmhmm! They didnt have to but I am so glad to see her.
So all in all I have had a top day today. I need to rest up for tomorrow as I am going to hospital to see my nero in the morning. I have to chase up on my wheelchair in the afternoon and I have a gig to go to at the night. The life of the disabled is aways moving eh! Oh yeah I finished an injection diary this morning I will start a new one tomorrow. Started Copaxone on 10/10/05 with a jab in the left bingo wing....and I am still here! I will keep you advised on what my nero offers me for the next step....You know I could probly tell him what the side effects are from whatever he says but I will let them do there job and keep my mouth shut!
Oh and after a request for info on smurf blood(Navatrone!) I have to point out a 'search this blog' search engine at the top of the page so you can get more info on possible treatments. Brought to you by people 'with' ms! (we love you Steph/Amanda/Jaime/Camile and everyone at the side of this blog>>>> oh and me!hehe) For Steph as she put request in via comment as attached! I look forward to any info you can pass on! Apocalyptica:Creeping Death
Kami *************************** This got me thinking of what impressions I am giving to the rest of the world. How do people perceive me and how I am dealing with everyday life with ms? Maybe I am thinking too deep into this but....Now I am worried. I do try to give a positive out look on my life,who doesn't? But I don't want to hide behind the curtain of false, positivity. I am very happy that Kami got in touch and it was the highlight of my day to know that I made a difference to someone else's life. Every comment I recieve is a highlight! But I do hide.
I am very worried. Ms scares the living crap out of me. I do struggle and I do need help like everyone else with basic tasks and needs. Ms is hitting me hard and I don't want to give a false impression to people who look at my blog with a hope that I am going to find a cure or have a better way of living. I am thick in the middle of this shit with you. But I do love life and I am holding on till the very end. Hopefully you understand where I am coming from here. I have nothing to hide with my blog...Well maybe but.... I think you should know that I am human, I do make mistakes, I don't have the answers for you................Yet!
If I want to do anything with my blog its to leave an honest impression of what ms 'can' do to someone's life......Then maybe....Just maybe....It will help you come to terms with your own experiences with ms. Whether your a partner, a parent, a brother, a sister or a friend to someone with ms or you have ms yourself my blog is to show you.....WE ARE STILL HERE! We are human with feelings like anyone else so don't ignore us, don't be scared of us! We are still the same people we were. We just need your love and care more. We are the wounded with an invisible ailment.
We can only get through this with your help. But ask if we need it first!
Right I'll get of my high horse now! sorry for the break in normal service. There will be more rock to follow.Hahaha!
Just had a text message from my brother and his wife they are in New York!!! I wish I was there too! Come home safe you too! I do hope you are all well. Dave
What if I told you there is choclate in it for you? Well a chance anyway! The idea is to collect signatures(or in this case email addresses) to support coa farmers in Ghana. It will only take two minutes of your time to watch some video and I think you understand. http://www.dubble.co.uk/chocnchange/manifesto.shtml
Non ms related issue but if you can help I am sure there will be people there who will be thankfull!
Have you got stress and depresion? Well take a look at this. Your thought,your trouble, your pain is one thought in your mind, you are one person in the billions on earth,
Your trouble may feel bigger than this but stay with me here:
Your depression is not even a dot from here but just to make sure:
Still thinking of it eh! try this:
How big is your problem now?
Now this will freak you out. The love you are capable of is bigger than this, whether it is recieved by the person you are with or not, is bigger than all of this. We are together and WE mean something. The universe would be nothing without you. Ms is hard but the trails and tribulations are part of this in the big picture. Without us the universe has something missing. All I have to say now is I love you with all the love in the universe. We can work this out! I hope you feel better now. Dave *****GOD PUT A SMILE UPON YOUR FACE (by Coldplay)********
Jen is getting tickets tomorrow! I cant believe it!!!!! I listen to these guys from the start of our relationship and they mean alot to me!(I love Jen more ofcourse!) I am so excited I am going to wet my pants! I see Jen on Saturday and I cant wait to give her a hug!
I have had a busy day today(its 12:40 dave!) I have phoned the council tax people and they are getting someone round to fill in the forms for me! I spoken to my physio and have booked a gym visit. I see my nero next monday(11th) so I will talk to him about PMA and go over Copaxone injection sites......Again! So it been a busy day so far.
You know....I think I will get over depression one day! Just take each day as it comes. Who's with me?
Have some more Nizlopi! This live too!
Hope you are all well! Dave (P.S I love you Jen!xxxx!)
I woke up this afternoon with a question for myself and I am not sure how to answer it.
Can I get my ugly ass back to work?
1. I am not ugly! And 2. Do I want to?
Its a question that brings more questions!!!!
I could do with the money that's for sure, I could do with seeing people again. Maybe if I ask to do part time it might be easier on me and on "THE JOB".
Could I get up early again and wash/iron my shirts...Again! We all work for a reason but would I be setting myself up for a fall(hehe!) again! What happens during a relapse? I need the money that's for sure! I don't have the ability to rest on my savings like some people. If that's the case then I have to get back. It's for damb sure that I can't rest with the government not paying out for me!...... Well if I filled in the forms correctly I would be fine. They make it really hard. Administration is not my best ability.
Going back to work is a pipe dream at this moment in time but it is possible! I have to do some things first! Like fill in forms!!!!!!!GODAMBMMMM IT!!!!!
Have some music to get me going:*****Chemical Brothers:Block rocking beats!***** Hope you are all well! Dave
Legs still hurt by my arms have a new lease of life!
That's about it for my update today! I know I need to get my sleeping pattern sorted out. I have ten days until I get paid next. I am on rock bottom when it comes to cash! I know I shouldn't have bought those Tool CD's. I found out from Jen that she has them! I have asked her for a list of her CD's so I don't go on a spending spree once I get paid! I need to sort out my cash flow.(more stress!)
Ok One last Shadow: ****DJ Shadow:The number song***** There is a Bass rattle in there from metallica! I love it! This is a remix from the original....Not as good but a good tune all the same! I am going back to bed! So tired! Hope your all well Dave
As well as getting my body to work I am going to have to get my mental state in order too! If emotional trauma was the cause to give me ms then I have to make sure I can rebuild that too! Bring on the good news for Dave. My cable TV company has given me access to digital television. I think in the US its like TiVo(jugging my knowledge of sitcoms!) This is not going to cost me anything more than I am paying now. Infact its just an upgrade of the services I have already.
It very nice of them to do it. I have also found how they plan to get more money out of me too! You can order films and watch them at a push of a button. You can also order full seasions of things(24 season 5 comes to mind) like comedy and science programs. I got to a show that I want to see,The Mighty Boosh, and it let me watch the first 3 episodes. Then it told me the next season was going to be 49p. Wahey!
49p for a season is fine in my books but I know I am trying to get out of the house and having good TV is not going to help at all!!!! But I will have fun!
Legs hurt today and my arms look like they have new life! I had forgotten how painfull muscle pain could be! I feel like I am recovering from running a marathon! Am I pushing myself to hard? (We will see dave!) I think I will take today off from the block circuit but I will continue the arm work. Sunday is a day of rest last time I checked! I told you DJ Shadow is good! ****DJ Shadow:Giving up the ghost****** Wish you all well! Dave
*****DJ Shadow:Long stem****** Spot the rif from a metalica! I have to start getting back on my feet today and I think this will help. I love Dj Shadow he has the clinical excellence I need to get me back into my own body. He uses samples from different artists to get his tune and I love his work! You rockers need to step down for my recovery! Watch this space for a healthy Dave back on his feet!
****Updated, I went for the walk around the block this morning(in between down pores!) I got down one side of the block ok....At this point I realized I had reached the half mile point and thought "Its the same length from here to my house which ever way I go!" so I carried on. The other street had a shock for me. All the houses have bushes around there properties. Its very hard to hold on to the wall if it has climbing vines around it or hawthorn bushes. It was only when I came to a space in the wall, 3 houses together with there drive ways combined, that I attempted to cross and my legs 'just went'! I ended up crawling 25 feet to the nearest wall and had great difficulty sitting on it! At this point I was a 3/4 of the way round(very near to the puddle I fell in last week!) When I was asked by a member of the public if I could do with a lift. Chris was a god send! I couldn't make it on my own! I think I might have to revise the whole 'walking around the block' thing. It was so hard! I am broken now and I think I have another hole in my jeans! I am not giving in tho! I can't! I might do something else tho. Anyone have an idea? I have herd swimming is good!
I have a weekend to myself and I am going to use it!
Wish you well Dave
P.S I am going to try it again tomorrow....And the day after and the day after that! I just hope that Chris is available!hehe!
Right! I have had enough of this crap! Ms has taken enough from me! This is my body and I am taking it back. There has been over 5 years of this crap and I hate it. I am going to do whatever it takes to have my life back. Its mine! Going to get enough health back to go back to work and protect my CD's from being taken by my bad debt! There mine and no pencil pushing dick wad is taking them away. I am going to set myself targets and do them every day until I get back my mobility! Starting small and repeating it until I break down or ms leaves! It will happen! I might have to change the music a bit but I will keep rock here don't worry!.
Right where to start 5 press ups per day. 5 leg squats 1 lap of the block per day(1/2 mile) without fail. 20 arm pulls(right and left) on the elastic band thing the physio gave me.
that's a starting block. I phoned the physio today and requested to be taken to the hospital gym. She is on holiday at the moment and by the time she gets back I think the plan will be in full flow. No one else can do this for me...No one else will.
Be prepared for Dave to come back into full flow......If I loose internet access because bills don't get paid....Lets not even go there!
Bring on the dance music I want to go back to Goa and dance on the beach.
If I have wasted 6 years of my life on feeling like this it will make me so angry.
Be well Dave P.S Sorry for two updates in one day but this important!
Is ms just really stressed? Can we really harm ourselves by being stressed out? Are we witness to extreme stress? This could be right you know! When you were first diagnosed with ms were you under stress at all? I was with the ex thats for sure but I hate to think that my brain can be that distructive that I want to hurt myself....SO goth dave!hehe
The thing is I see some light from this. Am I intellegent enough to cause harm to myself? Or is someone out to make a quick buck at the expense of people who have this disease? Makes me think of the people who have killed themselves through depression and I feel the need to kick the living day lights out of everyone who caused me stress in the past! I am pretty glad we dont have the ability to buy guns here if this is true!!!! Deffinatly something to 'think' about eh! *****Jamariqui:Too young to die***** Just got a decline letter from housing benifit as I could not give enough information to the claim. Getting out the house would have helped! Not being able to wright or print a letter to them didn't help! Back to work for me I think! Know your well! Dave
Name: personallog! Home: St. Annes, Lancashire, United Kingdom About Me:
I am 6ft 3" skinny and not well. I was diagnosed with ms in 2004 and I would like to speak with others who have ms. I have a want to raise money for ms charities. We have to find a cure for this hell!!!!
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