Today at physical therapy I was scheudled with another therapist, not my usual one. She noticed that I needed a re-evaulation and went ahead and did it. At the end of the re-eval, she told me that although my strength had improved, my balance and coordination was not progressing much. She felt that she felt they had reached the limit of what they can do for me and maybe it was time to discharge me from therapy. She commented that she was worked with other MS patients and there is only so much you can do, but I could always come in for a "tune up".
I was surprised and it made me sad to hear this. I feel like they are giving up on me. She said she'll discuss it with my regular therapist and they'll let me know what is decided at my next appointment on Friday.
I don't know what to think about this and wondered if anyone here has ever been told this by their PT? Is it true what she said about the limits for helping MS patients. Should I accept this?
I can really use your feedback and experiences because this is the first time I've faced this.
I was told the exact words! Even the part about the "Tune Up".
My PT told me that they basically try and show you ways to help conserve energy and to stretch but becasue of having MS, there wqs no "Cure All" through PT.
I felt the same way when they discharged me from PT.....It ws like OK, now what?
I try and stretch and definately keep my energy bank in the positive!
I am so sorry for your experience today, how disappointing and discouraging. I totally agree with Quix and think the therapist was out of line. Idk how this works but seems she was way off base considering she wasn't your regular therapist.
I guess you need to evaluate her assessment of you. If you want more I would fight for it. You have a voice in this too!
Julie, my guess is a mix of everything above, with the caveat that they need to look at your total picture. You have been through multiple health "traumas" in the past few months, almost all of which call for PT to help you recover.
When you meet with your regular PT, feel free to bring up your concerns and have this honest discussion of goals and appraisals and what is left that can be done at this time for you.
I agree, the therapist should have discussed her findings with your regular PT before saying anything to you, that is unprofessional.
My first physical therapist did not understand my limits and seemed to want to push me a bit further than I should have. It took the entire time between visits to recover. I did not request future visits with them.
The PT I have now works on rubbing out my spasticity and I actually feel 20 lbs lighter when I leave. I wish I could go daily. the girls there have just short of laughed at the idea of me starting a physical program. We have a pretty friendly and open relationship between myself, both the therapists and the office girl so the laughing was not out of context. I am lucky to be in a small town with a rehab facility that has good people that know and remember each other like old friends.
They have explained to me that in order to get muscles to work right they have to be healthy and have good blood supply. My spastic muscles are not healthy and need stretching and rubbing so as to help with my muscle fatigue. The idea of exercising is out of the pic for now at least. This is not to say that treatment and time won't bring back some of my old legs :)
We have discussed my approval for future visits. They specifically asked me how my therapy is helping. I have informed them that although I have learned how to take care of my own spasticity at home from them, I can not get the same relief with the big stuff as I do by seeing them twice a week.
I like the term "tune ups" that would be how I would state it. I missed my tune up today and am very saddened by this. Oh well. I have one for Thurs.
I hope and pray that Fri you can talk to your regular PT about some of the things on your mind and get it all straightened out. So much about insurance depends on what that Dr writes on the paper. For instance, my PCP wrote spasticity in hips and so the PT needs a new referral to look at my neck.
Thanks so much for all your comments. It really helped me put this in perspective.
I didn't take this news personally and knew there would be a limit. In fact I was planning on talking to my therapist about it. But the therapist yesterday just threw me for a loop because I wasn't expecting it.
This brings up another question about the limits of what can be done for those of us with MS or any chronic disease if things get worse. I think about DJ and all the problems she's had with getting proper pain management. How frustrating it has to be trying to get things under control as with her pain.
So I am concerned, not overly worried, that the limits to helping us with walking, pain, disease progression, etc are just that - limits and I wonder about it when I start hearing things like "there's only so much we can do from a PT". I am having a hard time trying to digest this concept.
I guess we just need to stay positive and have a backup plan or Plan B or something in case we hear start seeing a decline and start hearing this statement from different medical person. That's what I will try to focus on now.
Thanks for listening and giving your feedback it was very much appreciated.
I think this is a good example of why it really is important to have the best medical team assembled for your care - it really is necessary to have an MS specialist on that team who understands the nuances of treating this MySterious disease. They can help develop plan B with you.
you are smart to be forward looking, but don't take on everyone else's disease symptoms as your probable future, ok?
Everything in therapy is driven by measurable goals and progress. From the day the first evaluation is made, there must be a plan for improvement. Maintenance is not a therapy option! Insurance and accredidation make it so.
The measurements of progress and time frame for achieving them can be pretty narrow. It's not too unusual for different therapists to perform evaluations along the way during a course of treatment. But I agree that this one should have been a lot better about how she communicated a potential change to you.
Many therapy places have programs where you can go and use their machines for a monthy fee to maintain your progress under their watchful eye but without one-on-one instruction. I'd look into that. Then, if your condition changes (for better or worse) the doctor can prescribe another evaluation and period of treatment.
Many insurance companies also limit the number of visits covered in a given year or for specific conditions. Sometimes a therapist will end a program if your progress is slow in the hopes of reserving some visits to use at a later date when they would be more beneficial. I doubt that is the case here or she would have told you so.
I realize you are more troubled by the implication of this action than anything else. I can certainly relate to that but try not to make too many assumptions. You know how unpredictable this d*** dis ease is. You can begin to feel better almost as quickly and unexpectedly as you can get worse!
I met with my usual therapist and she decided our first activity would be to do some walking outside the office and out of earshot of the therapist who did my eval. While we were walking ahe asked me about the re-eval and what I thought about it.
I told her exactly how I felt, surprised and sad. I told her that I understood the point the other therapist was making and agree to an extend, but I felt that she should have talked to my primary therapist and not discuss it with me. I also felt sad that she thought there was nothing more we could do to work on the balance and coordingation.
So, my therapist told me that she agreed with me about how I was told and that that should not have happened. And, she disagreed with the other therapist that I should be discharged at this time. She has a plan and would like at max one more month to work with me. I agreed so now this the plan. One more month and then I will be on my own.
I am happy we talked about it as it was eating at me all week. My therapist agreed with you all as well. This was a good outcome.
Your usual therapist sounds very nice. I'm glad she's giving you a little more time to adjust to discontinuing therapy. I would make it known to the physical therapy office that you do not wish to ever have that other therapist again (in case your regular is out again on the day of your appointment - so someone else other than that inappropriate therapist could fill in for her).
Also, you might contact your local MS office and ask about some CDs or cassettes with exercises on them created specifically for MS patients that can be followed in the comfort of home (they have been produced by different MS societies - I have one but can't find it now). Maybe through your MS office, you could start an MS exercise group that could meet either at your local MS office or in each others' homes. That would keep you from the sense of PT isolation you may feel at the end of your PT sessions.
Like Zacksmomi says - rubbing and stretching out of spasticity, improving blood flow to muscles is important. That happens with massage. If you can't have PT anymore, maybe you could find someone good to give you massages. Many with MS find massages to be highly beneficial!! I know I feel much better after one - and that feeling lasts for days!!
Finally, I'd take Quix up on her offer of a slumber party with mint chocolate ice cream and hot fudge - sounds great to me!!! I'll be right over, Quix!!
You sure put a smile on my face. I am all for a slumber party!!
Your ideas about starting an exercise group and borrowing CDs from the local MS society office are wonderful. I never thought about that. I got an email yesterday from local MS group about exercise classes but they are so far away and I don't drive and the worst part, they are during the work week. I still work. So trying to find a place and find people around my area is a great idea. I'm going to look into it.
Another thing you and Zacksmom brought up is stretching out the muscles and I know that this type of therapy has worked well for Craig, Elaine's (momterem) husband. I'll mention this to my PT on Monday. Also, my spasicity has been worse since I stopped massage about a month ago. Hmmm....great idea and a reminder to me that the massage was actually helpful.
Thanks again for posting your comments. They were very helpful. I hope you are doing well and enjoying the weekend.
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