Yuku free message boards

First, what a great post Jclauson!! I think you are right on target with all you said - great stuff!

I'm no authority, but I have been around here for over 5 years now so I'll put in my 2 cents worth! I got WNV encephalitis & poliomyeltis in Aug 2003. My left leg & left arm were partially paralyzed. My right arm had very limited mobility and my right leg was receiving no nerve signals when they tested it. I could only drag it along as I tried to walk with the walker. I had to lift it with my hands or by grabbing the leg of my sweats to swing it into the car or up onto the couch. I could not step side ways with either leg for about a year. I was able to walk a few feet with a walker but I used a wheelchair around the house for about a year because it was safer for me without the risk of falling & because it conserved my energy to be able to do other things. I did not look at it as a crutch - I saw it as another tool that helped me heal. I couldn't drive for 3 months and then couldn't walk anywhere once I got there (I would drive myself to physical therapy & my therapist would come out to the parking lot & get me with the wheelchair) I could not lift my walker into or out of the car! I would wheel my wheelchair over to the door, walk with my walker the couple of feet to the car, get in the car (leaving my walker in the garage) and drive to town. It was such a feeling of freedom & accomplishment! And boy, did I hit all the drive through windows! Lattes, McDonald's, banking...any place that I could go without having to get out!

When I first got WNV in 2003 we read all we could find about the long term effects, the estimated recovery times, etc. My neurologist didn't think I would ever walk "unassisted" (most likely a walker, but maybe a cane for short distances). I had an awesome physical therapist and he told me that my spinal cord had not been severed - it had been traumatized - so there was no reason to not believe that I would walk again and every reason to hope! I did PT for a year and a half. I went from wheelchair to walker to a forearm crutch in 8 months! I can now walk without any assistance and I continue to improve (even after 5 years). My PT said that nerves grow so slowly that it can take years for them to recover. Some of them might never recover but others will take over for them. That is one reason that even though I have good range of motion now, I tire quickly, I have fewer nerves sending signals. You can see progress from nerve damage 7 years or more after the accident or illness. The WNV poliomyelitis damage (and Jeff, it sounds like your leg is similar) is different than what people experience from encephalitis & meningitis.

I have continued to gain strength, stamina and muscle. It took several years but I can now lift my right leg high enough to swing it over the seat of my Harley Davidson Softail Deluxe!! Of course it is the lowest to the ground of all the Harleys but it's a great feeling, nonetheless! I can ride my motorcycle & it is the one thing that I can do that I do not feel my torso weakness (at least not while I'm riding! I am pooped afterward!)

Like has been said in other posts, it doesn't happen overnight and it doesn't come without profound pain & sacrifice. I have finally (it took me years) but I have come to face the fact that I will never be as strong or have the stamina that I once did (partly because I am 47 and age is catching up with me at the same time as I progress and heal from WNV) but for those of you that are younger - I'd say you have every reason to hope for even more progress than I have seen!

Jeff, don't listen to any of the predictions about being at some point after "6 months" or that your recovery at some point is "as good as you can expect to ever be". I heard the same predictions and the fact is they just don't know. I believe the the doctors'and therapists' intentions are good - I think they want to give you some time line, some sense of hope, or encouragement but at the same time let you know that you may not recover completely. So they attach some period of time "6 months", "a year", etc. but they really don't know. I think they assign a time line from what they read or from what they may have seen with other cases. We are all unique, even those of us that have had WNV, no 2 of us have been struck exactly the same way or will we respond or recover exactly the same way. Never limit yourself based on what you hear about someone else. The sky is the limit & only you can decide when you are "as good as you will get" and even then, you might surprise yourself! (I know I have!!)

all the best - Shirley

I hope my comments didn't/don't sound too negative. I know what you mean that you "never thought about muscle strength before...it was just there" Jack & I have talked before about how we used to take it for granted that we could lift this or that and that we enjoyed long days of physcial work then all of sudden we couldn't open a pickle jar or pull the tab on a quart of orange juice. So first off you have to realize how far I have come in that I had no use of my right leg and little use of my other limbs; my torso was so hard hit that I had to push up my upper body with my hands on my knees to sit up, so bearing that in mind. No, I have never deteriorated back to square one, no matter how lazy I get. But, yes, I do believe that you have to work a bit harder than "normal" to keep flexible & keep the muscle that you gain back. We tend to be plagued with muscle cramps & fatigue so I think it feels like it's more work to stay in shape than it used to be. I still don't really "push it" because every time I do I end up paying dearly for it with pain & fatigue. So where I would have joined an aerobic class or walked 4 miles an hour on the treadmill for a hour at a pop as a effort to get back on track after holiday food binges now I find that slow & steady stretching and workouts works much better. But again, that is just me and we are all different. I have not regained all of the muscle in my stomach/abdomen area so I still have to brace with at least one hand just a bit when I'm sitting & I still can't lift things out in front of my body with both hands. I'm always bracing with one & lifting with the other. I do know some people (1 right here in town) that put themselves on intense work out regimes after WNV and they have recovered completely other than feeling a bit more fatigue from time to time. But they had WNV Fever without paralysis. I also know another gal here in town that had encephalitis and has not recovered full use of her hand/arm but she has gone from a motorized wheelchair to walking with a small brace on one leg - so has come a LONG way. Some things, for some people will most likely never come completely back whether it's mind/memory or body. Other people will feel that they have 100% recovery. It depends on how hard you were hit, what type of WNV you had (fever, polio, encheph, men) We don't know how far we can recover if we don't try.

I guess, what I'm trying to say to Jeff's post is that I think you keep your muscle strength pretty well without a big conscious effort and without having to "push it" all the time, but because I fatigue more quickly & cannot do the things I used to do on a daily basis then I have to make a more deliberate plan to stretch & keep muscle strength with actual weight lifting & treadmill walking. Bear in mind that I can't do alot of the daily activities that used to just "naturally" keep me in shape like vacuuming, dusting, painting, mopping, rearranging the furniture, long walks with the dogs, etc. Let alone the fun things we used to do like water skiing, snow skiing, horse back riding...so it feels like more an effort to keep that muscle tone than it used to be.
It's not like I think you have to be in the gym or feel pressure to work out to keep from regressing; just bear in mind that you might not be doing all the things you used to do naturally and you might have to make a point of being aware of your exercise instead of it just happening.
I think your swimming is an awesome thing to do - I love to swim and I think water therapy is excellent for anyone. WNV or not. Unfortunately I haven't had good access to a heated pool but I know that it is a fantastic way to build & maintain your strength & stamina.
Again, I didn't mean to sound discouraging in anyway.

Take Care, Shirley

Yes! I am RIDING a bike! I have my own beautiful red Softail Deluxe. I know, sounds crazy, but something about the way the handlebars & seat are situated, but I feel stable driving a bike! (it's the one thing I do that I feel strong, young & a bit reckless again!) I have trouble riding behind my husband on his because I don't have the handlebars to brace on so my torso gives me problems. So, darn it (LOL) I just had to get my own! I have had motorcycles of my own since I was about 12 so it's not like I just hopped on after WNV without any prior experience.

I may not be able to dust or vacuum like I used to but I can ride a motorcycle....go figure! God has a sense of humor, I believe!
Life is full of blessings and one of the good things to come of WNV is it forces us to slow down a bit & smell the roses, gain more compassion, and live a little more in the moment. It's all about perspective!

Shirley