Journal entry by cynthia collins —
Almost 7 months! Update !
Dear beloved friends of Marilyn ,
Happy Summer!!
First and foremost, thank you for your continued love , support , patience and prayers! They are working !!
We are finally in a place of what looks like the new normal and Marilyn , although she would not agree, is making incredible strides and is doing better everyday . She is .
If you didn’t know her, actually even if you did know her and were just passing by, you wouldn’t even know that she had a stroke .
Physically , she’s never been stronger thanks to her team : our dear friend and yoga master Paula has been working with Marilyn three times a week . Marilyn is now a Yogi . She loves it ... the whole thing .. the cerebral connection it requires , the calmness it evokes etc.... She also works out with amazing Marceleno a couple of times a week at the gym and without fail, she walks everyday with one of us.
No one is more surprised about this new exercise obsession than Marilyn ; like everything she does , she’s giving it 💯 %.
Mentally she is also 💯 % there . She does not miss a beat. She is the exact same Marilyn and not a bit of her comprehension has been compromised. None . She is right there with you exactly as before . That is remarkable.
The deficit however has come in a form of verbal recall “ Expressive Aphasia”. This is her repeated diagnosis... although sometimes that varies ... but usually the experts say her condition is a form of Aphasia whose cure is time and patience ... whose cure may be accepting a new normal.
It is beyond frustrating and upsetting for Marilyn to not have the right words come out even though in her mind she is saying them. Almost always, with patience , humor and persistence we can figure out what Marilyn is wanting to say. She absolutely hates this as anyone who is reading this must know. She is her harshest critic; understanding that healing from a traumatic brain injury takes time has been part of her journey. Part of the processing issue is that she believes she is saying the right word but often it doesn’t make sense. Random words Marilyn repeats and sometimes she knows they don’t make sense, other times she doesn’t know.If you are with her, stop her and correct her . This helps her. We have had to learn that this really helps even if it feels uncomfortable. She is in speech therapy a couple of times a week and we are also supplementing with different home therapies. If you know of any speech/ language therapist who work with aphasia patients , Marilyn would like to work more. We would appreciate any recommendations. I will refrain from Medicare talk but needless to say , that is now over (?????) so we are hoping to find private therapy. She has worked twice a week ( for 5 months ) with a great private therapist Hannah but Marilyn would like more . ( Thank you to Connect &Ability for so much and Hannah’s rec) Marilyn tried art therapy and that’s probably a one and done... but she loves trying new things ! We are all very open to any new methods for healing from aphasia .
Reading is still very difficult, so we are trying different ways to reteach that part of the brain. There just has to be more ways than what is currently “ the norm “..... we are in constant pursuit of what might be the best ways to get those dormant neurons working. This is our belief and our approach : that these neurons are not dead , they just have to be reawakened. Perhaps there will be a time when we feel differently , but right now we are focused on changing the narrative and getting the part of her back that SHE misses so much.
It’s an extremely personal choice and she has decided to fight to get her verbal mind back , so that is what we are doing. We are not living in naïveté , we are living in hope .
With the exception of the first week or so since the stroke, every decision about Marilyn’s life has been with her blessing. We have never not included her with anything in regards to HER LIFE. We don’t always agree , but it is her life and we respect the choices she is making. She decided she did not want a phone and for a while there , wasn’t anxious to be very social. We apologize for the frustration that “ dropping by” must have caused , but there wasn’t really another option .
Now however , she is answering her land line( sometimes) and listening to the answering machine to return phone calls. Someone is with her 24/7 and this is her decision . At this time , she wants to stay in her home of 46 years. However, she has not ruled out perhaps moving later, down the road .
We have a dream team in tact that without question is a HUGE reason why Marilyn is doing better everyday. My incredible first cousin Todd is her “ Manny “ and our second mom “ Ramona “ is “ the Nanny”. Todd is in charge of her schedule Monday-Friday so if you would like to visit or make a plan and cannot reach Marilyn on the land line than please contact Cynthia for his contact info . If it’s a weekend plan, please contact Cynthia. Reyna is there Saturday and Aunt Laura is there on Sundays . Marilyns family / friends are in and out and we take her out and spend the night etc.. Actually , we are going to Michigan in a few weeks and Marilyn is thrilled about that. If that goes well , there has been talk about cruises and trips and all sorts of things ... She is ready! She is bored and restless and ready for action. We have been going to movies and plays and they are always rife with Marilyn’s eye rolling or commentary on what could have been better, so there is more evidence of her progress.
Marilyn is the most social person and absolutely loves seeing people and visiting . Her energy level is not human and she has not once complained about doing the daily work that this healing requires. Even when we know she must hate some of it, she always smiles and says “ let’s do it “. Always .
She is completely and utterly interested in what each of her friends and family are doing . She remains the most genuinely positive and driven person I have ever known.
She is a fighter and it’s never been as obvious than right now of what a true soldier she is.
The journey of widowhood, retirement and a massive stroke in such a tiny amount of time has rocked her world , to say the least ... We have had to navigate a world that none of us knew and I hope you all never do. If you do know this world , we are truly sorry. If you have any ideas or suggestions we are totally open. It’s truly astounding that there is so little innovation in the field of stroke. We are shocked that we as a society haven’t come further in terms of treatment . But we believe there must be something we are missing.
I believe there will be a time when we look back at strokes as we look back at a rare disease.
Marilyn and we thank you so much for your support and love. Keep your phone on, she’s really talking about having paella parties again !!
Cheers to the new normal.
Dear beloved friends of Marilyn ,
Happy Summer!!
First and foremost, thank you for your continued love , support , patience and prayers! They are working !!
We are finally in a place of what looks like the new normal and Marilyn , although she would not agree, is making incredible strides and is doing better everyday . She is .
If you didn’t know her, actually even if you did know her and were just passing by, you wouldn’t even know that she had a stroke .
Physically , she’s never been stronger thanks to her team : our dear friend and yoga master Paula has been working with Marilyn three times a week . Marilyn is now a Yogi . She loves it ... the whole thing .. the cerebral connection it requires , the calmness it evokes etc.... She also works out with amazing Marceleno a couple of times a week at the gym and without fail, she walks everyday with one of us.
No one is more surprised about this new exercise obsession than Marilyn ; like everything she does , she’s giving it 💯 %.
Mentally she is also 💯 % there . She does not miss a beat. She is the exact same Marilyn and not a bit of her comprehension has been compromised. None . She is right there with you exactly as before . That is remarkable.
The deficit however has come in a form of verbal recall “ Expressive Aphasia”. This is her repeated diagnosis... although sometimes that varies ... but usually the experts say her condition is a form of Aphasia whose cure is time and patience ... whose cure may be accepting a new normal.
It is beyond frustrating and upsetting for Marilyn to not have the right words come out even though in her mind she is saying them. Almost always, with patience , humor and persistence we can figure out what Marilyn is wanting to say. She absolutely hates this as anyone who is reading this must know. She is her harshest critic; understanding that healing from a traumatic brain injury takes time has been part of her journey. Part of the processing issue is that she believes she is saying the right word but often it doesn’t make sense. Random words Marilyn repeats and sometimes she knows they don’t make sense, other times she doesn’t know.If you are with her, stop her and correct her . This helps her. We have had to learn that this really helps even if it feels uncomfortable. She is in speech therapy a couple of times a week and we are also supplementing with different home therapies. If you know of any speech/ language therapist who work with aphasia patients , Marilyn would like to work more. We would appreciate any recommendations. I will refrain from Medicare talk but needless to say , that is now over (?????) so we are hoping to find private therapy. She has worked twice a week ( for 5 months ) with a great private therapist Hannah but Marilyn would like more . ( Thank you to Connect &Ability for so much and Hannah’s rec) Marilyn tried art therapy and that’s probably a one and done... but she loves trying new things ! We are all very open to any new methods for healing from aphasia .
Reading is still very difficult, so we are trying different ways to reteach that part of the brain. There just has to be more ways than what is currently “ the norm “..... we are in constant pursuit of what might be the best ways to get those dormant neurons working. This is our belief and our approach : that these neurons are not dead , they just have to be reawakened. Perhaps there will be a time when we feel differently , but right now we are focused on changing the narrative and getting the part of her back that SHE misses so much.
It’s an extremely personal choice and she has decided to fight to get her verbal mind back , so that is what we are doing. We are not living in naïveté , we are living in hope .
With the exception of the first week or so since the stroke, every decision about Marilyn’s life has been with her blessing. We have never not included her with anything in regards to HER LIFE. We don’t always agree , but it is her life and we respect the choices she is making. She decided she did not want a phone and for a while there , wasn’t anxious to be very social. We apologize for the frustration that “ dropping by” must have caused , but there wasn’t really another option .
Now however , she is answering her land line( sometimes) and listening to the answering machine to return phone calls. Someone is with her 24/7 and this is her decision . At this time , she wants to stay in her home of 46 years. However, she has not ruled out perhaps moving later, down the road .
We have a dream team in tact that without question is a HUGE reason why Marilyn is doing better everyday. My incredible first cousin Todd is her “ Manny “ and our second mom “ Ramona “ is “ the Nanny”. Todd is in charge of her schedule Monday-Friday so if you would like to visit or make a plan and cannot reach Marilyn on the land line than please contact Cynthia for his contact info . If it’s a weekend plan, please contact Cynthia. Reyna is there Saturday and Aunt Laura is there on Sundays . Marilyns family / friends are in and out and we take her out and spend the night etc.. Actually , we are going to Michigan in a few weeks and Marilyn is thrilled about that. If that goes well , there has been talk about cruises and trips and all sorts of things ... She is ready! She is bored and restless and ready for action. We have been going to movies and plays and they are always rife with Marilyn’s eye rolling or commentary on what could have been better, so there is more evidence of her progress.
Marilyn is the most social person and absolutely loves seeing people and visiting . Her energy level is not human and she has not once complained about doing the daily work that this healing requires. Even when we know she must hate some of it, she always smiles and says “ let’s do it “. Always .
She is completely and utterly interested in what each of her friends and family are doing . She remains the most genuinely positive and driven person I have ever known.
She is a fighter and it’s never been as obvious than right now of what a true soldier she is.
The journey of widowhood, retirement and a massive stroke in such a tiny amount of time has rocked her world , to say the least ... We have had to navigate a world that none of us knew and I hope you all never do. If you do know this world , we are truly sorry. If you have any ideas or suggestions we are totally open. It’s truly astounding that there is so little innovation in the field of stroke. We are shocked that we as a society haven’t come further in terms of treatment . But we believe there must be something we are missing.
I believe there will be a time when we look back at strokes as we look back at a rare disease.
Marilyn and we thank you so much for your support and love. Keep your phone on, she’s really talking about having paella parties again !!
Cheers to the new normal.
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