Sorry for the vent post. I know you guys will be understanding. 🧡
It took me 3 weeks to get in with this PT place. The first visit went great, the first person I saw seemed to understand MS, found ways to work with my limitations, and when I went in for my first visit the PT was considerate, kept an eye on my fatigue level, and worked on exercises/stretches I could do, and explained what we were working on, an why.
Then this past Monday came. The place is not far from my house, so I drove myself, I was nervous about overdoing, because of driving myself, but it's one of the reasons I chose this place, so I could drive myself, it's so close. New lady comes out, calls me back, and says I'm getting on the bike. I say, I'm sorry, but I'm not ready to get on the bike. Nope, we are getting on the bike today. Somehow, I let this new lady convince me to sit on the stupid thing. We get it adjusted, it's an awful one that is not for people as short as I (lol, I'm very short!). I'm thinking a very small warm up, maybe a minute then a break? Nope, she sets the timer for 10 minutes. I almost panic. I tell her I cannot do this for 10 minutes. That is impossible and would wear me out for the day (and possibly the next few!). She says to just do as much as I can. Oh sure, I could push myself and do 'as much as I can', but I still have to drive home and do other things! I message my husband. I'm biking very slowly, and betting this lady has not even read my chart. At about three minutes, my weak leg is hurting. Hubby tells me to just leave. I think about it and give the lady one chance. I get my cane and stand behind the bike. The lady is with all the other PT's in a circle, and it looks like they are just gossiping and drinking coffee. I thought that maybe she would at least be reading my chart. I give her about 30 seconds. I'm already upset and emotional, so I do what hubby suggested. I walk out.
I think the hardest part of the whole thing wasn't that I couldn't get the lady to listen to me. Though that was very frustrating and I felt like I was just being run over, completely unheard. It was having the fact that I can't do the bike for 10 minutes, no matter how desperately I truly want to, thrown up in my face like that. I would love to be able to exercise like I used to. But the fact is, I can't. And my emotions went haywire trying to deal with this. I guess I've not had to come face to face with these things very often in the past several months, since my diagnosis.
All of that to ask, when you are faced with these difficult situations, and these harsh realities come up, how do you manage it? I mean, I know that I can't do the bike for more than just a tiny bit, but when faced with this situation and the fact that I really can't do it for as long as I used to be able to, my emotions were in turmoil. 🧡
P.S. I found another PT within my driving range. I spoke with the receptionist at length and I will be seeing the same person for every visit. It is a smaller place, so not as noisy, which is a huge bonus to me. I would see the actual Physical Therapist, not a tech, so big bonus there! Now to see if the neuro will actually put in the referral like she said she would!
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MSFlea
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I am so very sorry you went through that, hopefully this new PT will be a better fit. Do not be afraid to speak up about anything they have you do or even say no.
I did some PT over the winter and yes, it was always 1O minutes warm up on the bike, thankfully a recumbent as I could never sit on a regular bike. I soon told them I was not doing the bike anymore as it just took all my energy and I had nothing left for the rest of the appointment, it was wasted. They were fine with that. There were also other things they had me do that I refused if I did not see the value, or more importantly, something I could do on my own at home. I think I had more sympathetic and knowledgeable people than you, they were always asking if I needed to rest or get me a drink!
The emotional aspect I get, a few years ago at a PT appointment they had me doing this one exercise and I was only able to do it a few times with my weaker leg, I was shocked! I had no idea my leg was so weak, it just would not move! It was a good thing I was laying on my stomach because I started to cry, but I do not think anyone noticed.
Please let us know how your next PT appointment goes.
Oh, and good for your husband and good for you for listening to him. If and when you get the call about why you left, be honest. You were not treated well and trust me, management wants and needs to know that so it does not happen to others.
Thank you 🧡I had started out with stretches the last appointment, because I had explained that I get exhausted very easily and never know how much energy I have for each day. The lady I had my first appointment really understood, which was one reason it was so shocking when this lady was so... rude and just ran right over me.
I thought I was emotionally okay with where I am physically... but I suppose it is meeting each challenge as it comes up. When I was in the AF, the first few years the physical test was on the bike before it switched to a run, so I guess that part of my mind still sees being able to be on a bike as being physically able. I'm not really sure. But after talking to the receptionist at this new place, I am a little more hopeful.
The place I had that experience did send me a questionnaire, but it didn't leave much room for comment. I explained as best I could in the small space given.
MsFlea, I'm so sorry that happened to you. Physical therapists can be really mean sometimes, but what horrible situation. I think many of us struggle with the feelings you're describing. I can walk so well at home and going to doctor appointments, that I sometimes forget that I can't walk very far. Lately my hubby has had to push me around in a wheelchair when we go somewhere that requires walking, and it really bothers me now because I've been trying to get help for it for two years, and nothing has helped. So to me it's looking more like it's going to be permanent. And it is really a hard moment when a crappy realization hits you. I think it's basically a grieving process, and it's hard to get your head around the loss at first. It's almost like a death, where you're intellectually aware of what's happening, but it's just too much to take in all at once.
I'm so glad you left! I hope you'll call or send the management a letter explaining what happened to you, if not for yourself then for the next poor soul who comes along. It sounds like the person involved should be in another line of work. And good job finding another place so soon!
I'm sorry about what happened, but I'm so glad that you're here venting, because we're all here to support each other. I hope that things get easier for you soon. Sending hugs! ❤️
Thank you 🧡Maybe that is why I nicknamed it 'physical torture' all those years ago when I had my first round of it after my first knee surgery! LOL!
It really is crummy when the realization of a limitation hits you. I'm sorry to hear you are going through that with needing a wheelchair. If we go anywhere that involves a lot of walking, I have to use one. I use my cane whenever I go out. I actually bought a snazzy cane to help make me feel better about using it. I get a LOT of looks when I go out and am using my cane. I'm learning to ignore it.
I agree that it is a grieving process, that makes so much sense! I really thought I was okay with everything, but when confronted with the bike and knowing I could not do what I used to be able to do so easily... It was really difficult!
I did fill out the questionnaire that they sent me, but the comment box was really small... perhaps I will call and ask to speak with management and explain what happened. I agree, I don't want that happening to someone else!
Thank you, MSFlea. Our situations aren't exactly the same, I realize that I have had MS for 22 years before really losing this much function, and I can still get around really well if I don't have to walk far. Whereas you just got diagnosed and got hit really hard at the beginning, which I think is much harder. It's just that the walking situation is the closest I can come I can come to feeling the way you described.
I hope you're at least feeling a bit more empowered now that you found a new PT. I wish you the best.
So sorry you went through such a miserable, stressful and upsetting experience. You did the right thing by finding a new PT. I've had PT for various things, and quickly discovered that some are great and some are awful. Remember, you call the shots. They work for you. I went to a PT a while back that tried to make me do certain exercises that I knew I could not do. I explained that my M.S. limits me in many ways and it is important to structure the exercises around my limitations. If they cannot do that, I find a therapist who can work with me. I'm glad you did that, and hopefully, the new PT will be more willing to listen to your needs and work with you and not against you. 🤗
Thank you🧡I agree, and my husband reminds me all the times with my doctors and such that I am the paying customer and if I'm not happy it is perfectly okay to find someone new. Sometimes I remember this advice, sometimes I don't, lol. I'm remembering it more nowadays, though. With the new PT I found, I spent a good while on the phone with the receptionist explaining what I needed and my limitations to make sure that they had a PT who knew what they were doing and could work with me. Hopefully it will work out!
I don't even remember how she convinced me to get on the stupid thing. I'm short, 5 foot even, so I've never been on a stationary bike that is actually comfortable for me and doesn't hurt my knees. I know she talked right over me trying to explain that the bike was not something I was willing or able to do. What is a Nu-Step? Is that like an elliptical?
Maybe you could call your insurance company and tell them you were only there for five or ten minutes? Insurance companies are pretty cheap, maybe they wouldn't pay for it.
You are always assigned to a person who is responsible for you. I'm having brain fog this week because I took some new medicine last week and so I can't remember the word you need for that title but I will call tomorrow and get her title for mine. this person is a really good contact to have. you call her or him when you need a new doctor or any practitioner. they have the list of all the people in your area that are approved for by your insurance so they will cover them. I usually get some names from her and I look up their reputations online and if I can't find one with four or five stars I go back to her and get some more names. also I needed some things at home some different services because I'm having some struggles physically and I just let her know what I needed and she put me on to the right practitioners for prescribing those things. really helpful person to know.
in addition to according to her if it's a place like a hospital they will have an ombudsman that you can report to. I boil the report at the hospital I stayed with during pandemic. the place had lost track of itself. really sad because it used to be a really nice place but I was really mistreated by the staff and I reported all of it so at least it's on fire file I said most of the time if they get three reports of a problem with a department they will do an investigation so it's really important to file. with physical therapy companies they're often owned by a larger parent company which is where there should be an ombudsman to file with but I would start with your insurance company. they should take that report seriously.
I'm having brain fog this week because I took some new medicine last week and so I can't remember the word you need for that title but I will call tomorrow and get her title for mine. this person is a really good contact to have. you call her or him when you need a new doctor or any practitioner. they have the list of all the people in your area that are approved for by your insurance so they will cover them. I usually get some names from her and I look up their reputations online and if I can't find one with four or five stars I go back to her and get some more names. also I needed some things at home some different services because I'm having some struggles physically and I just let her know what I needed and she put me on to the right practitioners for prescribing those things. really helpful person to know.
in addition to according to her if it's a place like a hospital they will have an ombudsman that you can report to. I boil the report at the hospital I stayed with during pandemic. the place had lost track of itself. really sad because it used to be a really nice place but I was really mistreated by the staff and I reported all of it so at least it's on fire file I said most of the time if they get three reports of a problem with a department they will do an investigation so it's really important to file. with physical therapy companies they're often owned by a larger parent company which is where there should be an ombudsman to file with but I would start with your insurance company. they should take that report seriously.
Good for you walking out. I wonder how long it took them to notice you weren't there anymore. So far all of the PTs I've worked with have had at least some knowledge of MS and are willing to work around my limits of balance and fatigue.
Shortly after I was diagnosed, I had been looking up information about MS, and was asking a new primary care physician some questions about some of the information I found. He looked up WebMD.com to see what that said. I got mad at him telling him that was where I had gotten my information along with quite a few other websites. He took on a very condescending tone. Which ticked me off even more, and I walked out. At my next appointment with the neurologist, I asked my questions. She answered as many questions as she could, but her specialty was TBI and spinal cord injuries, not MS.
I think it probably took till everyone was done with their 10 minutes for her to figure out I was gone! She had her back turned and did not look my way at all when I waited to see if she would.
It is awesome that you have had good PTs so far! I'm really hoping my next one will be good. The receptionist was really helpful, and seemed confident that the PT would be able to help me.
Due to moving from Italy ( I was stationed there with the US Army) to South Carolina and currently in Colorado, I've gone through a few PCMs and Neurologists.
Greetings Queen. Big whoop for standing up for yourself. Doctors, nurses, and techs should be our advocates. Unfortunately we have to stand tall for ourselves. You always know yourself better than anyone. You know a good day and a not so good day. You're the first to know. That doesn't mean you can't get stronger as the day goes . Pace yourself always. The important thing is to survive another day. A sprint not a marathon. Stay MS strong.
🙂Thank you!!🧡I agree that the medical personnel should be our advocates. But, we have to be our own advocates. I sometimes still have a hard time with this, but I'm learning and getting better at it!😊
It happens more often than Drs will admit. I would file a grievance with the company & who ever her superior is about her attitude. If we don't stand up for our self we get walked on! I also have RRMS for over 30 years. Good luck. Mary
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