Went Downhill and Can't Get Back Up
 

I'm beginning to believe that my MS took a turn for the worse and I'm afraid that I'm not coming out of it. I had a 3-day course of IVSM the beginning of August. The following week, I had my 12th Tysabri infusion. The following week I had another course of IVSM, and now I'm in the middle of a 2-week Prednisone taper. My tremors, balance, leg weakness and fatigue are all bad.


Through Gentiva, the home health organization, I am now receiving home PT. Their plan is called Safe Strides, and it has to do with balance between your legs, feet, ears and eyes. Tuesday, I had a 2-hour assessment with my PT. Today, she is going to begin working with me. I will have two sessions a week for eight weeks, then I'll be reassessed.


I also will be starting back with my Yoga class next Thursday. We took a break during the summer, and are hoping that we have enough people show up Thursday to make a class. I've taken the MS Yoga for over a year now, and I think it is remarkable. Although, whereas Monty could help me get up off of the floor after relaxation, my legs are too week now to be able to do that. I'm going to need him and another person in class to help me up.


I'm thinking seriously about getting a small scooter that comes apart and will fit in the trunk. I want it mostly for around the house, though. I'm now using my Rollator to get around the house, but I still fall, even with the Rollator. I figure a scooter will be a help and not a step backward.


One good thing, the Celexa is working and my mood is pretty even. I haven't had crying jags or gotten mad at anyone.


We had our son, daughter-in-law, and two grandsons here for a long weekend. Things got a little hectic, as the two neighbor kids came over every afternoon to play, eat, and have fun. A couple of times, the noise and commotion got to be too much for Monty. Every once in awhile, he would go off and lay in the hallway or the kitchen. We had a wonderful time talking, laughing, and playing. They've moved from South Africa to Brooklyn, NY. They took the train from Brooklyn to Lynchburg (a little over an hour from where we live), and we picked them up at the train station. We have plans to meet them in New York City in October, and they want to come to Salem again in December. It is so very good to have them here!

(((((Maryann))))) It especially worries me that you are on Tysabri and your MS seems to be getting worse. If I were you, I would stop the Ty and have a thorough exam for the possibility of PML entering the scene.:eek:

I know, scarey, but the possibility is there and if you catch it early you have a better chance of getting better.

I'd stop the TY anyway as, Obviously it is not working for you.:hug:

Hey MaryAnn. How I hate what MS is doing to you right now.

I use a rollator too. I also have one of those small electric chairs (Jazzy) that can break into 5 pieces to take in the trunk of my car for outside trips. I will probably use it indoors if/when the time comes.

I chose a chair rather than the ever so popular scooter. I liked the turning radius more.

MS Yoga sounds so great. I tried regular yoga and it was a total disaster. I felt bad for the class in that the instructor was freaked by my presence in her class and my desire to modify her routine. So embarrassing but :rolleyes:.

I would love to have PT!!! I think all MSer's should have that available and offered. And a massage! I may not feel parts but getting a nice rub with oil, just my kind of therapy.:D

Give Monty a treat from me.

:hug: So sorry your MS is getting worse. :hug: The MS yoga class sounds like a nice class to take and I hope they'll have enough people to have it. If getting a scooter is going to help you, you should definitely get one if even just to save some energy.

Maryann, did they do the JCV blood test on you that people get when on Ty? Maybe you are not a responder to Ty. Two new oral meds will be out soon, maybe that might be something to think about.

What does your Neuro think about this down hill slide?
I hope the IVSM and taper kick in and that you feel better real soon. :hug:

MaryAnn, first and foremost, HUGS! :hug: I am sorry you are feeling so poorly.

Walgreens.com has a portable scooter very reasonably priced, and its light weight and easy to travel with. Pops apart and pops right into your trunk. Easy to care for, and half the price of most others.

I agree with the others that the JC virus scares me, and I would want to be tested if I was on TY and doing poorly. I hope you at least have that talk with your MD. Congrats on doing a full year btw!

Please know we are here, even if just to hug you or listen. :hug:

First, I wanted to offer you hugs. I'm sorry you are feeling so poorly.

Second, I do not want you to get frustrated with recovering function after a flare. It can take time. I was really in a bad way for a couple of years. It took pulsed steroids every 3 or 4 months and the right balance of Baclofen to find my way back to "better". I'm not "normal", but way better than I was. Since I've been stable like this for a couple of years, I guess this is my new normal.

Finally, do not underestimate the toll that stress and upset can take on your MS. You have a lot of stress and worry right now and that can really do a number on you. I think the yoga is a wonderful idea for that. You really need to take good care of you right now so that you are able to help your hubby.

You guys are the greatest!

Sally, they are monitoring my bloodwork closely. My home health nurse is going to contact my neuro next week to give him her report. Then, he will contact me with further instructions.

The TY was holding me in a steady place until this last flare. Stress with my DH's cancer and the heat I'm sure are what caused the downhill slide.

Thank you about the information on the Jazzy chair. I am definitely going to look right into it, plus the one sold through Walgreens. Thanks, I never thought WG would carry any type of scooter or chair!

I'm also going to contact the medical supply company where I bought my last Rollator and forearm crutches to see if they have what I want and how much Medicare will cover.

As an aside, Arnie has been on 25 mg of Sutent for 11 days now. His side effects so far are minimal. We have an appointment Sept 1 with his oncologist at UVA. Please keep him in your thoughts and prayers.

Monty has been a wonder dog lately. He can sense when something is wrong with me. He does everything I ask and more. I don't know what we would do without him.

Hugs to all of you, my friends!

I am so glad you are monitoring your bloodwork closely.:) I hope and pray that Arnie keeps holding his own and somehow beats this thing. I also pray that you find the strength to get through the stress without MS biting you in the butt.:mad:

:circlelove: ((((((Maryann, Arnie & Monty)))))) :circlelove: