Gosh, its the second of February and I’ve just headed up the next newsletter on my computer saying March. Man, is that ever soooooo scary. Christmas was only yesterday !! Next thing we’ll be in the middle of winter and you fellas up north will be laughing at us ‘down under’ Some of you people sure popped out of the woodwork after the February newsletter went out. Fantastic to hear from you all especially those who rarely make contact.
I guess it is honesty time and I have not be fully up- front when people ask me how I am. The truth, here and now, is I have never been so bad as what I am now. I’m really fighting going into the fancy power chair inside the house which was made for me as Trish’s power chair alone is destroying our fourth laying of nice new carpet and already she has worked right through it again in some places. My thoughts are that a second chair, especially at the extra weight it is, would shred our carpeting to bits.
Even outside I’m very rarely using it, but instead fumbling down the 100 yards to the letter box on my walker in the hope that it is exercise and eating which is causing my stomach to outdo any pregnant woman. I know it isn’t, but I have yet to find an intelligent medical person to back me up and find out what it is.
As to be expected with such neurological drama the head is showing the most complications in my life. The whole left side of my face is now numb but also the lips and tongue run in numb mode. I have numerous times over the past 12 months gone to my dentist with tooth pain which is very unusual for someone with the rare SS side effect of being unable to feel pain in their teeth. Just this week in bed while lying on my side I’ve realised that its the jaws are actually responsible for the pain.
Tinnitus ears squealing has never been so bad, nystagmus eye wobbles are permanent full-time things and when I get sinnusitis which for me is a blocked solid nose, painful eye brows and eye sockets, plus a small triangular section either side of the nose on the cheeks – the nystagmus eye wobbling extends itself to the whole face.
Unfortunately SS myelopathy not only worsens daily in my legs, but is now obviously paralysing my arms also. I can only hope it takes equally as long in the arms as it did the legs, because once it is well established in the arms also, its ‘goodnight nurse.’
I am most appreciative that this past 2 or 3 weeks lower back pain has gone to the Mediterranean on a cruise, but bowels and bladder have become even more unreliable. The penis, my own special pain relief valve, is operating at its very best. It has much to take into consideration after all !!
As well as my penis screaming blue murder, the eyes and ears keep it in very good company. Sadly the Cochlear Implant is close to useless but in fairness it ain’t it, its the brain that can’t interpret the incoming signals. The signals are loud enough, just undecipherable. Leonard, my CI audiologist and I for years have known that it is struggling to compete against the sinusitis symphony orchestra playing full strength in my nut.
Despite wearing my ming blue glasses this past 3 weeks I’ve had several migraines. They have mostly been hitting in the first hour after rising, something some medically-educated person could possibly advice me why.
‘Parkinsons hand wobbles’ are back again.
My complaints of birds flying into my side vision then out again, has progressed to being human sizes doing it. Needless to say, this alone is very upsetting.
So friends, if you suddenly don’t get any newsletters from me, I hope you can understand why. There will become a time I say “stuff the whole stupid world.” Two weeks ago I went to my Care Giver doctor to get another 3 month’s supply of medication and I told him I accepted I was firmly into the final chapter of my SS life. I never heard his reply as usual, but thankfully next time I opened my gob, I actually did say the right thing ” I’m hoping I can spin the chapter out into a long one”, Trish told me later.
Now, with my own experience I can 100% appreciate what has gone on with many of our dear departed friends. I just hope I never emulate Bill in Memphis and paint our white cat with several coloured high-lighters, nor go out into the public with no clothes on. I can’t afford to upset pussy, nor the population !
I’m sorry to those who asked me how I was and I didn’t tell you the truth, but I think its time to come clean and also to pre-warn all my friends what could happen with this curse called SS of the CNS.
My best advice to everyone is to not turn down any experiences in life while you can still do them. Go scuba diving, climb Mt. Everest, write a book, but don’t withhold now and be sorry later. Listen to me guys.
Q & A with Dr Levy
(1) physically, what causes the cramping ss-ers experience in their legs, hands, fingers, toes, bodies? what neves are involved? are there exercises that can be done to minimize the cramping? if so, how/why do they work? does heat help relieve cramps and if so how?
A.1. Cramping is due to poor communication between the spinal cord and the brain. The spinal cord’s job is to contract muscles and the brain’s job to control the spinal cord. So when the communication breaks down, the spinal cord is less inhibited by the brain and sends more signals to the muscles to contract.
When you cut the head off a chicken, it runs for a while. That’s because the spinal cord is controlling the muscles without input from the brain. Our spinal cords are less controlling than a chicken’s, but it’s the same idea.
Rehabilitation establishes new circuits between the brain and spinal cord and that helps to re-establish control by the brain.
(2) physically, what causes incontinence? we’re told it’s myelopathy, but exactly what happens to the spinal nerves causing them to react this way? and are there any ways to strengthen these muscles? are there any drugs that work well without a lot of side effects?
A. 2. The sphincter muscles that hold the urine in the bladder are topically stimulated by the spinal cord. If the spinal cord fails to keep those muscles constantly contracted, urine flows out. These muscles are not under voluntary control except the very last one, so exercises are generally not as helpful.
The other major cause of incontinence is bladder spasms similar to other muscle cramps. The medications for incontinence are designed to relax bladder muscles.
(3) neuropathy. specifically, what is happening? how does the hemisiderin cause the nerves to malfunction? is the lining of the nerve eaten away or destroyed leaving the nerve exposed? is this exposure what’s causing the pain? if so, how?
A. 3. Neuropathy in SS is caused by destruction of nerves as they exit the spinal cord. It’s the same disease process. Hemosiderin coating the nerve, the supporting cells doing their best to protect the nerves, the supporting cells become overwhelmed and unable to keep up with the toxic iron, the supporting cells die, the neurons can’t function without their supportive cells and eventually die too.
(4) memory retention. what can be done to improve memory? eg., like playing games. but exactly how does this work?
A. 4. Improvement in memory can only be attained with practice. There are all kinds of memory games out there that can be helpful.
(5) why does our gait widen? physically, what’s causing it? are there exercises that cazn be done to return the gait to its original stance?
A.5. Gait is a complicated process. It takes humans a year to figure it out because it involves many neurological systems. Disruptions in any of them can lead to gait problems: neuropathy, cerebellar involvement, sensory loss, weakness, spasms…
(6) what sort of drugs are not supposed to be taken while on ferriprox? can a patient take vitorza or byetta (sp?).
A.6. The only things that cannot be taken with Ferriprox are things that bind Ferriprox in the gut: iron pills and vitamin C, and any vitamin pill that contains either.
Peace to you all this March
Dave
Superficial Siderosis 