Today is the second anniversary of my stroke. Happy Anniversary to me!
I’m so grateful to be alive. I still do have some challenges to be sure, but I am getting better all the time and learning to accept that I don’t have speak perfectly in order to live a great life. I’m managing the pain well most of the time and when it’s bad and I can’t do all that I want or planned to do, I’m much better able to let it go and give myself a break. Today, I don’t want to focus on me but to take the time to thank my Stroke A Team. Without them I would not have been able to recover as well as I have.
Not in any particular order....my A Team is composed of family and medical professionals. My husband and sister stayed at the hospital most of the time I was there. I think the hospital stay was tougher for them than for me. In fact, I know this was the case. I was just going with the flow; what else could I do? When I came home, my husband was a rock star, taking care of everything and making the arrangements for my medical care. Even making sure I had food was a challenge due to the fact that the hospital didn’t give him much guidance about my swallowing difficulties. And then It took several weeks for me to be able to say even a few words, but when I did, I started to talk to my sister every day as we had before the stroke. Both my husband and sister have been my rocks throughout my recovery and I am forever grateful that I have them in my life and on my A Team!
My son and daughter-in-law drove from Nashville, TN to RI, a 20 hour drive, when they heard I had a stroke. They will never know how much that meant to me and husband. Their help was a Godsend then and now. They were there to greet me with I arrived home. Since I wasn’t able to speak, they relied on gestures and some limited written words that I could write, in order to provide what I wanted or needed. It was my daughter in law who was the best at charades, guessing what I wanted or needed most of the time. I don’t know how she did this but I was extremely grateful. My son was the best advocate for me with the home care staff and eventually getting outpatient occupational and speech therapy. In fact, he flew back and attended my first outpatient appointments. This was so comforting to me. At the beginning of my stroke journey they were there for me and still are today. They are an important part of my A !”
Next on the team is my daughter. She was, and is, unbelievably helpful even though she lives in Richmond, VA. She was already scheduled to come to visit me the week after my surgery (and subsequent stroke.) I was supposed to recuperate before going back to work so we had planned to do some things together for a “vacation“ week. Well, she came in anyway as planned. We didn't have the fun vacation we wanted, but she helped me enormously, more than she even knows. She has always been a ray of sunshine. I always have the best time with her and love her company. Right after I had the stroke that is what I really needed. She was also there to help my husband and me with errands and tasks around the house. And it might seem like a small thing, but when I desperately wanted to put my contacts in, to feel more normal, she was the only one who could/would help me with this. Even still, two years later, we talk most days. This really helps my speech progress.
The medical professionals on the A Team:
Primary Care - Kathy Rebeiro, NP, with the Women's Medicine Collaborative. I had only been a patient of Kathy's for about 2 years when I had the stroke. We didn't really get to know one another in the yearly appointments, but now I see her regularly. She takes excellent care of me and in the beginning of my stroke journey she was there for my husband.
Vascular Neurologist - Dr. Tina Burton of the Stroke Center at RI Hospital. I just saw the first neurologist once 2 months after the stroke and when he left to do research, I was told when I had a question that I should go to the emergency room to get a work up and then a neurologist would see me. Kathy (above) made a lot of calls and was able to have me seen by Dr. Burton. Dr. Burton is wonderful and make the connections to the physiatrist.
Physiatrist - Dr. Caroline Sizer. Reading books about recovery after stroke, I heard about the speciality of physiatry but since no medical professional working with me at the beginning suggested I see one, I assumed that the speciality didn't exist in the US and certainly not in RI. Boy was I wrong. When I met my second neurologist Dr. Burton and complained about ongoing pain and numbness in my face and right hand, she referred me to my current physiatrist, Dr. Caroline Sizer.
Physiatrists act as liaisons between patients and other providers. They focus on safety and coordination of care for the patient, provide functional consultative services, and guide the patient’s rehabilitative journey from the hospital, to rehab, and ideally, back to their community. Physiatrists build long-term relationships with patients in order to help them reach their goals.
Dr. Sizer had helped me tremendously. Her referral to OT helped me to deal with the pain of neuropathy and central pain syndrome.
Speech Therapists: I saved the best for last! Since I had more speech challenges than physical ones, perhaps the most important people on My Medical A Team are my speech and language pathologists (SLPs). These three SLPs have been most instrumental in my progress and recovery. Each came into my life for a specific reason, I believe. I am most grateful for their expertise, commitment and compassion. They are truly exceptional people.
Nancy worked for the VNS home health agency and worked with me at home for about a month. She is the one who helped my find my voice! Nothing came out for what felt like forever. Initially we tried singing. This didn't work well for me because I think I was too self conscious and my apraxia made it very difficult to form any words. I remember knowing the songs but couldn't produce the sounds. Eventually what worked for me because it was concrete and meaningful to me, was to use carrier phrases (I need......) and to talk about family. The first name I was able to say was Amy (my daughter in law) and the last one was Cheryl (my own name). In fact, my name was so hard for me that I joked with Nancy that my name was now "Mary". Eventually I was able to progress to outpatient therapy and that was where I met......Dee
Dee was not assigned to me when I got my appointments at outpatient therapy at Miriam. I was assigned and evaluated by a young lady who was just hired full time there. This SLP was going on vacation shortly after I met her and said that I could take the week off or see another SLP there. Of course, I was extremely anxious to get started so I took the appointments with Dee. That was the very best thing for me! Dee had a similar approach to Nancy, one that was more client centered and matched my philosophy of teaching. I was extremely fortunate to have worked with Dee for 8 months. In that time, she not only helped me to achieve the basic goals I had for speech, but helped me adjust to my new reality. I cannot tell you how grateful I am to have had Dee in my life and on my A Team. As we worked for such a long time, I am not able to give all the details; you will have to wait for my book, LOL.
As is the story of most outpatient speech programs associated with hospitals, once the patient goals are attained, the therapist has to discharge the patient. I guess, you could say my basic speech goals were attained. When I has discharged at Miriam, I could talk so others could understand what I was saying. I talked haltingly, slowly, and made a lot of error with consonant blends. I used strategies successfully to compensate for the words I couldn't retrieve. But no way, I was finished working on my skills. I desperately wanted to speak more naturally (more like a did before) and wanted to read and write more. I had goals to write my blog and book. I had goals to volunteer. So I remembered that Dr. Saad gave me the referral to Speech Works RI to look into continued speech therapy once traditional outpatient therapy ended. I am grateful, and a bit amazed, that my medical insurance still pays for my speech therapy.
The same week that I was being discharged by Miriam, I called Lucia at Speech Works and made my first appointment and started the same week. Lucia immediately made me comfortable and understood my goals of continued speech therapy. We joked that her therapy was like graduate school. I have worked with Lucia for the past year. She is a gifted speech therapist who has a similar background as mine, as an ESL teacher. She has taught me strategies that helped me to relax and speak more fluently and has helped me with writing and reading. During this year, I can tell that my speech has gotten significantly better. At times, I can hear the old Cheryl. I have had to accept that I may have to speak slower than I did before. But that is ok. And I'm not finished progressing yet.
I am so grateful to my A Team. Some of them are still an active part of my recovery. All have helped me in ways that I cannot repay. THANK YOU to my A Team! You have my sincerest gratitude.
My Story_______________________________________________________________________
I really wish that the hospital could have helped me coordinate a recovery team. When a person has a stroke there are so many things that affect recovery - having the necessary medical appointments, rehabilitation, and mental health to name a few. In my humble opinion it would be great if a person could leave the hospital with a team already set up to address the myriad issues. In my case, at least, this was not the case. I looked at the discharge notes recently to make sure I didn't forget something that they may have done for me. NO, I was given very little information at discharge and even going forward I was told very little. I was instructed (or my family was) to contact the doctor who would give me a 30 day heart monitor, contact the visiting nurse office for home health care, and make an appointment with the vascular neurologist. The paper said that I had a CVA (cerebral vascular accident or a stroke). That was it! And verbally my husband was told to put a thickening powder in my drinks. (I knew that I was supposed to be given a swallow test but wasn't before discharge. I couldn't tell anyone because I could not talk.) Thank God nothing bad happened, like choking or aspirating because I didn't eat or drink very much for the first few days.
Well, I don't want to focus on the negative side of my recovery today. Eventually I will share the story about coming home in further details, in the blog or in my future book. Today I want to focus on the A Team I was able to assemble in the past 2 years. I had a lot of help getting the right people on my side.
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