Classic relapse and remitting HNA-

And, I am better.

I had a brief drop to around 80 pushups, and have since slowly worked back to 100. And since then have pushed the count up to 110 again.

I definitely feel this is classic presentation of HNA relapse and remitting attack pattern. I had a quick onset of weakness with no pain, and a comparatively longer period of recovery. So far, it is too soon to say if it is a complete recovery, but i feel just as i had prior to the attack; although strength is nto quite returned to normal.

I also think my ability to exercise prior to this attack helped me overcome any long lasting impacts of the attack.

All things must pass . . .

I know I have been gone for some time now. There was not much to say. I was in a stage where I could exercise, and I felt great. Now, things have changed again.

For the last two years in fact, I have been able to exercise effectively, going from very few pushups originally, to a high of 130. And for about the last year, that amount has averaged above 100. Now, well- I am in a bit of a downward slide.

It started with a bit of shakiness in my lower back and thighs. But the pushups were not impacted at that time. Then pushups dropped to 100 for the first time in a year. Then I did 100 one more time, but it was not feeling good at the end. The next time I was down to 95. Look at him, complaining he can only do 95 pushups. Ah, but the next day it had dropped to 87. Muscles don’t feel right after exercise. It takes way longer to recover from exercise.

I hope it turns out I am worrying about nothing.  I still feel good. I have no pain. And usually, an attack of Hereditary Neuralgic Amyotrophy starts with some amount of pain. Maybe I do not have pain because I had been exercising? Could be. But, pain doesn’t always occur in attacks, anyway. It could also be that I will not bottom out as weak as I did the last time. That had been a major attack, with pain.

How many pushups should you be able to do?

I was never much for physical activity when I was young. Don’t get me wrong. I tried. I was just always behind my PE classes. My muscles would not respond to being pushed. I was lucky if I came out at the average according to the numbers on this chart, courtesy of Physical Living- http://physicalliving.com/how-many-pushups-should-i-be-able-to-do/

Push Up Test Norms For Men

Age	17-19	20-29	30-39	40-49	50-59	60-65
Excellent	> 56	> 47	> 41	> 34	> 31	> 30
Good	47-56	39-47	34-41	28-34	25-31	24-30
Above average	35-46	30-39	25-33	21-28	18-24	17-23
Average	19-34	17-29	13-24	11-20	9-17	6-16
Below average	11-18	10-16	8-12	6-10	5-8	3-5
Poor	4-10	4-9	2-7	1-5	1-4	1-2
Very Poor	< 4	< 4	< 2	0	0	0

Push Up Test Norms for Women

Age	17-19	20-29	30-39	40-49	50-59	60-65
Excellent	> 35	> 36	> 37	> 31	> 25	> 23
Good	27-35	30-36	30-37	25-31	21-25	19-23
Above Average	21-27	23-29	22-30	18-24	15-20	13-18
Average	11-20	12-22	10-21	8-17	7-14	5-12
Below average	6-10	7-11	5-9	4-7	3-6	2-4
Poor	2-5	2-6	1-4	1-3	1-2	1
Very Poor	0-1	0-1	0	0	0	0

 

You know what? If I had seen this information before I started my return of strength recently, I may not have pushed it as fast, or as far as I have. My muscles, I knew, were not very good at responding to exercise. As it is, it took a number of months of daily exercise to get a response that would have been in the consistently “Good” range for a 60-65 year old male. Now, at 50 twice a day, I am close to “Excellent” for a 17-19 year old and way above “Excellent” for my age.

My goal for now? No limit. I will keep doing pushups as long as my body allows me to. My appetite is way better than it has been. My stamina is increasing for the first time is years. And my weight is increasing. Why limit it?

Avoid long term magnesium use- Push-ups now up to 40?

For those interested in my magnesium use, it would probably be best to warn you to keep it at a minimum, ongoing, or stop it all together as soon as you can do so.

In fact, I had stopped my magnesium supplements from time to time, only to restart when I felt suddenly worse overall. Now, I have no plans to ever use it again.

My primary doctor agrees that anyone with a neuromuscular disorder should limit use of magnesium or any other long term muscle relaxer. There is, as it turns out, a possible long term use detriment.

My own update as far as strength is this: Last night, and again earlier today, I did 40 pushups.

Yep. That is still a bit hard for me to believe, since at the height of my magnesium use, I almost never did more than 5 at any one time, and 5 was a hard stretch.  
 
Now, the 40th one is a hard stretch. But it is 40!!!! When did I ever do 40 push-ups in my life? Never, that I can remember. So much for my friends suggesting that I was unable to do push-ups because “We are just getting too old. Face it”.

Two months in- still going stronger

Two months in- still going stronger

I am still doing better after just short of two months since stopping the magnesium.

My breathing is much improved, especially at night. My general strength is improved.

Pushups are generally averaging around 15-20, with 25 to 30 on rare occasions. I am not sure why this discrepancy in amounts exists. It could be due to the time if day I attempt the pushups. I still take a multiple vitamin daily that has a highly absorbable type of magnesium. And I have noticed that if I take a day or two of my old magnesium supplement, my pushup total and breathing suffer.

This link to magnesium impacting my strength and breathing is troubling. It must mean something, but I am not the one to guess what. 

Pushups return, and did magnesium cause weakness?

Hi again to anyone that sees these posts.

I have been absent. Other things take precedence, at times. One thing I have talked about in the past is that magnesium has helped me, at least during and right after the attacks. It, for me anyway, helped to tone down the twitches and leg jerks that I had. I am going to suggest now that you watch out about taking it long term. Do breaks from it from time to time, to see if it is still helping or like I think happened to me, started to cause me more harm than good.

I have talked about my ongoing weakness. Some HNA sufferers report ongoing weakness and breathing difficulties. I had all of that. I never even thought about it at a certain point. It had become part of who I was. The weak guy over there who sits around while everyone else moves on with their lives. That was me. Maybe you are that person too. Or maybe you know someone like that. 

Since my attack, I have taken magnesium religiously. I have taken my own advice from time to time, and have stopped it for a week or two, until I would start to feel those familiar twitches start up again. Or I might feel tightness in general as my muscles tensed up. Magnesium is good to ease those things. It made them go away for me. And I could never stop taking it for long. It did seem to help. But, I had no idea that it also could be adding to my weakness even at the dose I was taking. I had no clue until the most recent time that I stopped.

It has been about a week now since I stopped my morning magnesium pill. And I feel so much better now. I fell less shaky in just doing everyday tasks. My breathing has improved. A couple of days ago, I tried to do some pushups. And I was amazed that on the first try, I could do 10.

Those 10 pushups were a bit shaky, but I was amazed that it was 7 more than I had been able to do for the longest time. So a half hour later, I tried again and did 20 with no shakiness. A half hour later I tried again and did 20 more. The next morning I did 15 and a bit later did 25 more. And now, for the first time in a very long time, the muscles in my arms are actually sore from that exertion. It feels amazing. I have to admit, I thought my doing any sort of exercise ever again, was a pipe dream. I felt like I was aging in an accelerated way with this disease to blame. And now I feel like I have part of my life back. Maybe because that magnesium is getting out of my system.

I know it has its place. I may use it again if I am in an attack. But, I feel like I will never just blindly take it just because I think it has helped in the past. After a while, at least in my experience, that help goes sideways and becomes more of a hindrance.

So, take it but watch out for possible problems of long term use. It might make you feel better at first, but it also can have opposite impacts in the longer run.

And maybe, it is all a coincidence and at some point my return of strength will go away, magnesium or not. 

I will let you know.    .  

And more push-up stuff

In the last week or so I have found that I can do between 10-15 push-ups every 2-3 days.  I am definitely not pushing myself this time. And I have not been able to increase the count past 15. I guess that is one thing about HNA. There definitely is not any muscle growth past what you have at any given time.  I am only trying every 2-3 days. I will not do this every day for anything. I have already seen how over exercise does not work in the long run.

Push-ups already gone again and balance issues resurface

Well, this was a very short-lived improvement as these things go.  Just now, I tried again to see if my strength was still at the level it had been when I wrote last. Nope.  I already could tell prior to the attempt that my strength was not there. I was shaky again. That seems to be the key here. If your muscles feel shaky just existing, it is not likely that they will have the extra required to do heavier exercise.  Back to a shaky 3 on this attempt then.

What else is in the mix? Well, through the last few years I have had episodes of dizziness, and vertigo associated with Nystigmus.  Generally, this is confined to nights in bed- specifically getting out or into bed.  Lying down is worse than getting up. But I have a bit of trouble walking straight after I feel I am OK to stand.  Lying back down can be quite exciting as well, and I am thankful that at these times, I have no place to fall to.

I see that I am not alone in issues related to balance.  It is a known that HNA sufferers particularly do have problems with the inner ear and hearing.  Again, it is listed as “rare”.  And again, I just hope that my doctors have not missed something I will eventually have worse problems with.

Some return of strength again. . . Push-ups coming back

For more than a year now, I have not been able to do any push-ups.  This has been due to my frozen right shoulder, and extremely tender muscles and tendons in my right arm/shoulder area.

The time had come a couple of days ago to see if this part of my arm weirdness had passed again, and maybe a bit of strength had returned.

A couple of days ago, I tried and I did 10 a bit shaky push-ups.  Compared to recently when I could barely hold my body in the position to try, I will count them.  Just now, I was able to do 15 with no shakes.  Maybe I am on the mend again. Do not let me over do this.  No need to get greedy and try to do 30 next.

Shoulder update

It appears my physical therapy has ended for now.  I have reached Medicare’s hard cap for therapy for the year evidently.  I am lucky I suppose that most of my issues with my arm have resolved favorably.  I have real good range of motion, even if my strength is still way too low.  Gabapentin helped me reach this. If I had not started taking this, I doubt I ever would have made such improvements in range of motion.  (As of now, I have stopped taking gabapentin as pain has gone away).  Actually, D3 helped also.  Or it may have been a coincidence that shortly after starting D3 supplements, my stamina improved enough to begin some light exercise with goals of improving my strength.  Neither of these helped enough to get me to think in terms of even a short term recovery from NA.

Those sites that suggest that recovery is an easy thing for PTS/HNA are still wrong, at least as far as my case goes.  I am still weak, especially in my lower back.  My arms seem a bit stronger now, but not to any noticeable degree that would allow multiple reps of an exercise with weights.  My therapist is interested in following my case at least as much as allowing me to briefly drop by to fill him in on my progress and get new exercises.  I figure that I saved Medicare as much as $20,000 by use of PT to get use of my shoulder back. Nothing says I would not have problems in the future even with successful shoulder surgery now.

“Low-D” update

I have been taking a daily supplement of vitamin D for the last couple of weeks, and there are early indications that this 5000 IU daily supplement is helping a number of issues that I had earlier attributed to NA.

The biggest thing is the reduction of nerve/muscle fatigue.  During my regular physical therapy sessions, I had been asked to exercise using an arm exercise style “bike”.   This is on a machine that has an arm crank that you turn using different settings to achieve goals of reconditioning your upper arms and shoulders.  While initially doing this exercise prior to my taking the D3, I had trouble turning this for more than a couple of minutes with very little to no resistance.  As the Borg would have said, “Resistance was futile.”  A couple of times I had to stop before reaching the preset goal of only ten minutes, and it felt extremely hard to go past 5 minutes.

Now since taking D3, the last few times I have had no sensation of fatigue in the early going, and this is with the settings now on what they call “constant work.”  This setting really is weird in that if you maintain a certain speed you do not really feel the resistance. If you go too slowly, the resistance sets in.  But the key is that you have to go faster. Before the addition of vitamin D supplement, when I finished the 10 minutes, I could usually end up around 1.0-1.1 miles on a good day and usually in the .9-1.0 mile range, with no resistance set.  Since the addition of vitamin D, I have been regularly hitting 1.3-1.4 with a high of 1.5 miles using resistance setting as constant work.  And at the end of 10 minutes, I now feel as if I could go on for a longer time.  It is true that I feel like my muscles are getting tired during this, but I can tell that they recover while still exercising and the strength is not negatively impacted.  This has made a real difference in my physical therapy.

My therapists had been concentrating on having me do stretching exercises and including the exercise bike if my arms would tolerate it.  Now my therapy is being geared to a more active use of my arms.  Instead of passive stretching, I am actively using my arms within my achievable range of motion with a ling term goal of increasing strength.  This is closer to what my arms would be doing in the real world.

A few days ago, I also tried to do a pushup.  I was not successful.  My shoulder still has too much pain with certain actions.  But my left leg feels stronger at my hip, and my right leg just above my ankle is much stronger when driving around town.  That had been getting worse and I had been getting a bit more worried that my ongoing weakness would impact my ability to do necessary driving; like to doctors for me and my significant other, grocery shopping, etc.

"Could it be low-D? " (Vitamin D3 that is. . .)

Long time readers will remember how I have often wondered if my weakness, tremors and all other weirdness that did not quite all jive with my understanding of HNA were really a part of that illness or some other odd thing a bunch of doctors may have missed. . .  Well, it may well be something the doctors missed that was caught by my Physicians’ Assistant.

In a routine (yeah, like a $2,000.00 test can be routine) MRI of my neck looking for source of arm pain, in an aside, the pathologist said it looked like I might have a small lesion on my parathyroid.  Hmm. On my parathyroid?  Yes.  Well, my thyroid recently came up with a nodule that is benign and thyroid function was normal.  So, my PA ordered a test of parathyroid which was off the charts high for PTH, but showed normal for calcium.  Before the lab had a chance to get rid of the rest of my sample, he ordered a vitamin D test, which showed extremely low vitamin D.  What does this mean?

Well, the parathyroid regulates calcium and phosphates and is linked to vitamin D levels.  I am lucky that my case of hyperparathyroidism seems (so far anyway) to have been caused by low vitamin D. If this is true, I should be able to reverse it with additional supplements of vitamin D.  How does this relate to my weirdness of tremor, weakness and muscle fatigue?  Evidently, low vitamin D not only can cause  secondary hyperparathyroidism, but it also contributes to muscle weakness, tremor, fatigue and even in adults some risk of malformed bones- maybe like what is happening to my pinky of right hand.  The cause of D deficiency varies, but leading culprit is long term vegetarian diets and lack of sun exposure.   If you are worried about sun, use blockers. If you do not eat much red meat or eat other things that have no D3, use a supplement.

I will let you know if the supplement works.

Updated- Yes, the vitamin D supplement has done its thing.  My PTH is now in the normal range, and this is also true for vitamin D levels.  Overall I feel a bit better, but no where near anything approaching normal.  It is one less thing to worry about though. . .

Reinventing the wheel – Back to step one of diagnosis?

Regular readers should remember my history.  Actually, it is the same as most of my fellow NA/HNA/PTS (call it what you will) sufferers.  It takes forever sometimes to get a diagnosis of this kind nailed down.  I have had countless tests over the years that seem to suggest a diagnosis of Neuralgic Amyotrophy, and some doctors have agreed it is probably the hereditary version.  That is the diagnosis I have had since 2007 after my winging scapula, and it has been suggested that the prior problem with my right hand was an earlier flare of the same thing.  I have also determined on my own, that I have had a number of previous possible flares dating back to around age 12.  Fast forward to today.

Well, actually starting the end of last summer to be precise. . . I had a few weeks of pain very similar to prior episodes.  One might think that by now, I would be a pretty good judge of how this manifests itself.  But each doctor seems to have to reinvent the diagnosis.  I have told my current and still relatively new doctor about this possible flare up.  I have given him information about the disorder, namely the St. Radboud pamphlet referenced in my links section. My current arm pain resulted in a bit of a loss of range of motion since the episodes of pain lasted a long time, and resulted in my loss of some arm strength.  That pain is ongoing.  He has done an MRI of my shoulder to rule out orthopedic causes, and there does not seem to be an orthopedic cause for the arm pain.  Now, since I have pain after months of Physical Therapy and recurrence of arm weakness with that pain, he seems to think it could be due to problems in my thoracic spine.  I told him that I had an MRI of my neck years ago which did suggest I had some mild disc degeneration, but not at sufficient levels to cause the pain I had back then.  In a funny Déjà vu, he suggested that if the MRI rules out an orthopedic cause for my ongoing pain, that he would suggest that I see a certain doctor in town.  He mentioned the name, and it is the same doctor I had seen years ago who thought I had muscular dystrophy.  I said I was acquainted with him, and he asked how my relationship was with this doctor.  Well, it started out good, but when I called to ask him if he would see me for pain issues when I had still had better insurance, I was told he did not want to take the case.  Any reason why?  No, they just were not interested in seeing me again.  I guess I would have to see someone else if it comes to that. . .

Anyway, I guess it is OK to rule out things that may not be known, but I have a diagnosis that is of a disease for which there is no cure, and people do not generally get better. Even in types of NA that do not repeat, full recovery to prior level of function seems to be rare.  In my case, I have a form which repeats.  In those types that repeat, you have even less chance of full recovery of prior function.  And in my case I have ongoing weakness and periodic bouts of pain.  This has gone on most of my life.  Sure, look at other stuff if you have to. But the diagnosis is what it is.  There are certain aspects of this that do not change; at least not in my case.

But you still do not look sick. . .

I have posted about this link (Funny, you do not look sick- Spoon Theory) previously.

I hear this quite often, and it is true. I really do not look as bad as this can feel at times.  I find I have to keep reminding some people anyway, that just because it appears I am OK does not mean that I am totally fine.  On the contrary, I am not fine, and it really appears at this point that any recovery I may have now, or at some future speculative date, will only be a partial recovery at best. And probably will not last very long.  I hope I am wrong.

This is a common problem for many with a disease that makes one just feel worse than they may look to the untrained and some trained eyes as well.  There is an acquaintance of mine, who has spoken to others about my condition saying to the effect, “I do not get this.  He looks OK to me. What is up?”  Even my current Physical Therapist who has had a prior patient with PTS/NA and knows at least some of the limitations, had appeared to forget recently that I may not be up for any exercise right now even of a fairly low-key type.

I had to re-explain to him that my muscles do not respond at this point, to any physical “training” that other PT patients may be expected to do at this stage of treatment.  I told him that there may have only been one time in my life when my muscles really felt normal, and that at that time it all felt so good to me that I over-exercised and set my recovery back quite a bit.  I mentioned that currently my body feels extremely shaky with almost all movements.  True, there are some days it is a bit better, but overall it is way out of any normal muscle response to exertion.  All my muscles fatigue easily.  What I can do is limited by this fatigue.  They warned me my muscles may feel stiff after exercise.  I said I really doubted that since to be stiff, they would have had to do some work- beyond what the basics of my mobility currently.

I think that maybe now they get it.  I hope so anyway.  I may be the last PTS patient they see in there practice, but I am there now.   There are things I just will never be- and one main thing is, that I will never be muscular to any normal degree.   I no longer seem to be wired that way, if I ever was.

Life with Hereditary Neuralgic Amyotrophy

Day to day, living with PTS/HNA is not really so bad.  But, it can be limiting.  I can do stuff, but only for a while before the muscles just fatigue and say “NO MORE TODAY.”  My Phrenic nerve is still OK, so I think that makes a bit of a difference.  I understand how limiting it could be if I was tied to an oxygen tank for any time of the day.  Or just to feel constantly as if I had to use all my energy simply to breathe.

I have often wondered if I really had HNA, or if I was just unlucky as far as having a case of PTS that repeated for its own reasons.  Over the years, I have begun to accept that even if I have no other PTS related cases reported in my family, I can still have HNA.  My case is really not as severe as some I have heard about.  Maybe other cases that may be in my family were just not severe enough that they were caught and diagnosed by a legitimate doctor.  I have some suspected reports of weirdness in my family that suggests a possible related type of syndrome as PTS.  Maybe that is enough. Then there is my own history; that if I look back far enough and with the knowledge I have of HNA now, maybe my history also suggests a diagnoses of HNA is the correct one for me after all.

First, I have always been for lack of a good descriptive word, small.  My legs were OK, and I made some good use of this from an exercise standpoint by riding a bike as much as I could to get my lungs into at least fair shape.  I think that has continued to put me in better shape now even though I no longer feel safe to ride.  My upper body just never responded to any sort of exercise program.  I could do exercises, but only a limited number before my muscles just gave out.  I wondered about this at the time, but figured it was just normal for me.  Twenty pushups seemed to be my limit for whatever reason.  Certain other arm related exercises escaped my ability entirely.  Pull-ups?  Nope, not until much later and even then I was limited to only a couple.  Rope climbing?  Surely you jest.  I could not even think how to do that with my limited arm strength.

Others in my PE classes may have started out as I did. But they grew stronger with the work.  I stayed the same, or grew so slowly in strength that I was rapidly left behind.  I began to just know that there were things everyone else seemed more able to do that I could never hope to accomplish physically.

It was not just this memory of having lacked muscle strength in my early years that I am remembering now.  I know that I had periods of neck and shoulder pain even back as far as the 6th grade.  I have memories, and others from back then have told me they were aware of the fact that I had periods I was in a lot of pain.  Some of the shoulder pain was centered on my scapulas.  This sort of shoulder pain repeated many times from those early years to my now documented attacks of NA.  So, it appears I have had a long history of pain and weak or slow muscle growth that I now think of as being caused by HNA.

Any physical activity now is even more limiting.  I worked in the yard today for an entire hour and a half.  It may have been less time than that.  I had a clean-up job to do. It did not involve heavy lifting, but did require a bit of kneeling down and bending over followed by standing again.  The muscles worked for a while.  Getting down was hard from the start.  My legs shake all the way down.  Standing is a bit easier.  What hit me eventually was my lower back.  This low back muscles start to fatigue and I know I better finish up because my time is now limited by the ability to stand at all.  Luckily, the size of the cleanup was such that I could do it, and finish before my muscles just gave out.  People tend to misunderstand at this point, because they can work long enough to actually get a sore back.  Nope. For me it is not about pain as I live with HNA.  The acute periods of an attack surely have the most severe pain I can think of. But ongoing, it is about muscle fatigue and weakness, and also about feeling good that I can even work for an hour or so doing limited work, but at least working.  And no, it would not help to exercise what I do not have to exercise.  That, as I have learned from experience, can cause more problems than it seems to help at the time.

Physical Therapy is working- Shoulder is "thawing out"

Well, with the help of physical therapy three times a week and stretching on my own in between appointments, I am slowly getting range of motion back to my right arm. I am sure the orthopedic doctor who gave me the shot of cortisone will be disappointed at that- assuming I do go back to see him.  What I have found is that the muscles of my shoulder had allowed it to get into a position that stopped it from moving to normal range of motion.  With concentrated effort to move my shoulder prior to stretching, I was able to get it past the previously frozen limits to some extent.  And my Physical Therapist has been getting it to go even further in the manual stretching portion of the treatments.   It is slow progress, but it is working out of it.

Sometimes a nodule is just a nodule- back to HNA/PTS discussions

After a biopsy (close to $3,000) which was inconclusive, and a CT scan at around $950.00, it has come to light that the nodule in my thyroid is benign.  Both of these tests, plus around $800 for blood work, are things my old insurance would have not helped much as far as payment- and as such, I would have declined them.  At least now, I can know for sure it is OK to not do anything right away and to monitor the growth over time, for unwanted or unexplained growth.

So for now, I can get back to concentrating on the HNA question. I think it is really a done deal as far as the hereditary part of the NA.  I have clearly had another attack at the end of last summer concentrated to right shoulder as far as worst symptoms go.  This was alluded to in recent posts, and right now is better overall as far as pain goes, but still I have lingering pain in right shoulder, and have to at times use left arm to support the right in daily use.  It was/is clearly nerve related pain, responding to prednisone long term, but not even touched by any amount of ibuprofen. Sleep is an issue again.  Any time on my right side results in pain that wakes me up.

Weakness continues, but it is not quite as bad as it can be.  I really can not even think of trying push-ups until my right arm recovers a bit. Also with this new attack, I am having a bit of vertigo and nystigmus at times. In the past I also went through a short period of this, and it passed eventually.  This time, it is a bit worse and the lengths of time of the "spells" seems to be longer. It makes me wonder again about other possible issues, but I also know that HNA can produce periods of vertigo. And I know that others with HNA have reported dizziness at times.  I will just have to be more careful until it gets better.

Legs and minor return of strength

Yesterday I mentioned my legs felt better.  At the same time I noticed that there was a bit less shakiness in them. It has been easier to kneel down and get back up.  This being true, I wondered what the old push-up test would suggest.  The last few times I have made attempts, I have only been able to do one or two, and those have been iffy.  Yesterday, I could do ten.  They were not the best because my right arm is still a bit funky, but I managed to do them and generally felt OK during them.   It is interesting how the return of strength relates to cycles of diminished pain, particularly in my legs.   By the way, ten yesterday is all I am interested in now.  Maybe in a week or so I will try again.  But even if I do not, I can tell when my legs get stronger or weaker what part of the cycle I am in.   I sometimes wonder if anyone seeing me out around town wonders why some days it appears I can barely walk, and other days I am walking fairly normally.  This is truly an odd disease.

Leg pains and forget what I said years ago

I have to say that I am not enjoying this anymore.  Not that I ever was. But, recently my legs have been bothering me.  It is hard to even sit here typing. They both ache. Walking sometimes is hard. If I have managed to fatigue either of them it is like walking with the proverbial rubber crutch.  I must look like one of those poor people that folks see tottering along in old age. Well, I am old, but not that old yet.  This certainly is a new wrinkle in something that is supposed to only impact shoulders.   So- We have weakness to the point of falling, but not quite yet.  Luckily this usually is only one leg or the other. If both went at the same time, I would be down for the count.  Pain is bearable, but a constant reminder of something that is not right down there.  It starts at lower back almost to my butt and runs down to hips and knees.  Standing makes it worse. Usually sitting is better unless it is as I am now with a desk chair and arms extended to keyboard.

And the arm still bothers me at night trying to sleep.  Actually now that I say that, turning from one side to the other is harder again, and staying any time on my back irritates that achiness.  Oh well.  It is not like I Have to get up and go to work. But, it is harder to get around and stay out doing anything at this point.

That brings up another issue.  I ran into someone recently who asked me if I thought I identified with the disease too much.  I know I mentioned here before that I was trying not to do that- some mumbo-jumbo about not “being the disease.”  I think it is good to try to keep that attitude.  It is very hard to do it with a condition that is chronic, or that is constantly evolving as it cycles through you.  Sure, I do not go up to someone and introduce myself “Hi I am Joe Blow and I have HNA.”  But, there are few times in a day that I am not thinking about it in some way.  If not in a cycle of pain, it finds other ways to remind me it is there.  If I get complacent and forget about it for a while, I usually end up dropping something or hurting myself trying to pick up something that is way too heavy and I should know better than to attempt at this stage.  So, to that person (if you ever make it to the blog and read this) I guess I do identify with it a bit too much- maybe more than I would ever admit.  But, it makes itself hard for me to ignore it.  Now, I really do have to go. Sitting here just is no fun anymore.

Just a bit on legs. . .

In the beginning, I may have had shakes in the legs a bit, and some early fatigue below the knees noted while walking. This is still the case, but I notice even more weakness now. That and weakness particularly to the Jambier anterior- at least that is the one it appears to be.  My neurologist had noted that muscle was particularly atrophied in that areas of my leg a few years back.  I had not noticed problems related to that at the time. But now I notice while driving that my leg gets shakes in the region of that muscle. This was when driving in San Francisco with much stop and go and hills involved.  I was happy when I got back to freeway and could rest my leg by way of cruise control.  Since then, I have noticed leg weakness on the left, early in the morning to the extent it feels as if I could fall if I do not concentrate.

And that may be the biggest concern with this disorder.  It is not that it completely stops you, but that it limits you by requiring concentration to do even simple maneuvers most folks take for granted.  Pay attention, or you drop things. Pay attention or you could fall.  As I age, falling takes on an entirely new level of potential worry. I may be fine otherwise and I fall. I break something, and end up in bed. Lack of movement follows, and then pneumonia. . . It happens all the time.