Hello everyone. I just thought I'd give you all an update on how my husband Jim is doing after experiencing his first episode. Jim has now spent almost 5 months in hospital, and continues his recovery in their neuro-rehabilitation unit. He is in various different therapies trying to recover as much function in his feet, legs, arms and hands as he can. The neuropathy has been quite extensive, but he is relearning to walk, and they take him up and down a flight of stairs every day. He is also receiving a lot of therapy on his hands which are gaining a lot movement back, but are still quite curled up and stiff. We have also had confirmation that the vision and hearing loss on Jim's right side are permanent. But down the road he can get an implant to help with the hearing loss, if he so wishes. He is still dependant on a wheelchair full-time, and he needs help getting dressed everyday, but it's amazing how many things he can do for himself now. He is on Terbutaline for now, and the dosage has been increased a couple of times already. Theophylline will be added soon as well. It has had a negative impact on his mood and he is grouchy all the time. The doctors here don't seem to be very concerned with this side-effect, but I can understand it's lower on the priority list. There is no word yet on whether or not my appeals for IVIg have been successful, but I suspect that won't be an easy battle as this is Jim's first episode. But that doesn't mean I won't keep asking and pushing every time a specialist is within earshot. For now, our priority is Jim's recovery and getting his life back on track. We have just received his first set of leg braces, and they are helping him out a great deal in therapy. I have finally found a rental apartment (with elevator) for us to live in, and should have him home in 3-6 weeks. This has been so tiring.

Thank you so much for sharing your travails with us, Liesa, and I'm glad to hear that your husband is recuperating and will be coming (to your new) home next month. Most of us -- the ones who manage to survive, that is -- come out from the first episode with physical disabilities and sometimes also with organ damage, which is much harder to reverse. Thus, if it's any consolation, keep telling yourselves that "it could have been much worse." This saying became one of my own mantras, so much so that I now look at almost everything from the bright side. With regard to Terbutaline and Theophylline, which they are likely to give him next, remember what I wrote in an earlier post: "Both medications have side effects, as you will see by searching the Internet, so fasten your seatbelt: Look for an increased heart rate, nervousness, irritability and insomnia as the dosage rises -- and Terbutaline is also prone to induce shaking (in one-third of patients)." "As the dosage will probably keep getting hiked after you both return home, I advise you to insist that your MD prescribe a tranquilizer for your husband, or at least something to help him fall asleep. In case they don’t tell you this, it’s best to take these medications in the morning and afternoon -- preferably never in the evening, just like you would never want to take 20 cups of coffee after 8PM." So just because the doctors don’t seem to be very concerned with the side-effects, don't let them put the issue at the bottom of the priority list. Insist on trying out different tranquilizers starting right now, while he is being monitored and before he is discharged and you have to face the mood and other problems on your own.

Jim was finally released from the hospital and has now been home for about 5 days. I am very happy to finally have him at home, but can describe our current mood as overwhelmed. He will continue his therapies as an out-patient, and we are just waiting for the facility to contact us. The specialist taking care of Jim has been wonderful and has done a lot of research, but he feels treatment with IVIg therapy would be overkill. I'm not sure if those are his exact words, as I've been unable to speak to him directly (I'm working full-time again). However, I do strongly disagree. In my mind, there's no such thing as overkill when trying to prevent loss of limbs or life. Jim has been completely unable to tolerate Theophylline and gets extremely sick with even small doses. He would prefer to take his chances with the illness than live life like that. He is therefore only being treated with 20 mg of Terbutaline a day. For now I'm just taking a breather and trying to assemble a mass of questions for our next appointment with the specialist...but I'm at a loss as to where to start. There's just so much information to get through and try to absorb.

We're glad that Jim is back home with you, Liesa, and wish you good luck in normalizing your lives as much as possible after such a traumatic experience. If it is any consolation, many of us have been there and done that. Your doctor might suggest that he should also try taking Singulair, which is another inexpensive asthma-related medication meant to strengthen capillary walls, but a modern one without significant side effects (unlike Theophylline and Terbutaline).