saraandjack

Lenny, tough weather makes me depressed too. You have so much reason to have hope!! Enjoy your grandson. And I hope you get the best scooter ever!!! Thinking of you. kindly, Sara

Hi Dean, Excellent blog and excellent articles. I just finished reading the article about Brunnstrom vs Bobath. So interesting! I am a PT who went through the bobath training for treating adult hemiplegia. My sister died of a stroke at 20, and my Dad had a stroke this year, so it is something on my mind. I think that there are some really good PTs and really poor PTs out there (sounds like you agree??). I think that of a therapists cant comprehensively discuss the treatment rationale for their approach then that raises a red flag, and you should request someone else. I also think that while one treatment approach works for one person, it might not be the best fit for another, and you (being the PT) should be flexible to each situation. I am sad to hear that you had such a poor experience with the bobath (NDT) approach, sounded harsh! In my training I never learned to tell a client "no, that is the wrong movement". That usually meant that I was doing something wrong in the set up or facilitation of the exercise! I also believe that the bobath method relies on "massed practice", from my course they explained that it requires thousands of repetitions to get the other parts of the brain to recover (neuroplasticity), and they advised up to 5 hours a day of this type of treatment! Thats great if you have the personal funds to hire a PT for that, but clearly the insurance companies dont support this type of rehab. So I feel discouraged that there may be a treatment out there to treat hemiplegia, but there is no access to it. I am so curious to find out what "worked"for you?? It would be a learning experience for me to find out. I have never seen a stroke recovery patient so well versed in stroke rehab!! You should give a lecture!!! I hope your recovery is going well. kind regards, Sara

Loved your blog Brian! Just wanted to say that! Sara

My Dad had an NG tube placed when he was in the hospital after the stroke. He didnt do well when they tried to place it in the hospital room, so they brought him down to radiology to do it. He pulled it out the next morning, it was so uncomfortable! He had the PEG tube placed within the next week. Hard decision for us because we knew he would never want to permanently be put on a feeding tube, but he was basically incoherent, so we had to make a decision. Now 5 months out he only gets water flushed through his tube, he eats pretty well. As soon as he takes in enough fluids they will remove it. A PEG tube is soooo much more comfortable than an NG tube, but I understand that there are many long term ethical issues regarding this. Just realize that it is not a permanent solution, and can help someone get over the hump of not getting themselves enough nutrition. All the best, Sara

The only blogs I have posted so far have been pretty bleak. I was desperate for advice and support for my Dad who had a stroke in April, mostly about depression and post stroke denial (thinking he can do things he cant just yet). I really felt that things were going downhill, and worried that my step-mom and brother couldnt manage the ginormous task of caring for my Dad at home. But somehow things have changed!! I went home for a weekend 3 weeks ago and my Dad was so depressed he barely spoke. I am a physical therapist and while we were doing some standing and walking exercises in the garage I looked up at him and his eyes were closing. I completely understand that after a stroke you need to rest and sleep much more than usual, but I knew that he was withdrawing and just "didnt see the point". My brother and I sat down with my Dad and called him out. Asked him why he closes his eyes and seems "sleepy" during all of his home PT/OT sessions, and the minute they leave he "wakes up". We had a heart to heart about all of his goals, and that they wont be achieved by just waiting to get better. He admitted that he didnt feel the therapist knew what they were doing, or what the point was. Anyway, that week he really changed. THey changed his anti-depressant meds and he started kicking butt in therapy! Now he is sitting up straighter in his chair (used to always be slumped to the side). He is talking all the time, and eating great. My step mom totally rallied and is now doing transfers by herself, and spending full days with my Dad without an aide. She even sent home the night home health aide (which is saving them so much money). My point is to all caregivers or stroke survivors trying to manage the extremely trying time of coming home after a stroke...it actually does get better! Never thought I would say those words. One of the wise responses to my last blog was "patience and perserverence". So my hope is that you might read this and gain some hope. That you might wake up one day and think "this might work". It will never be easy, and it will never be the way it used to be. But it might be okay. That there will be laughs, and there will be times when you are all smiling. Isn't that what you were hoping for? Thank you for all of your support! I will keep you posted on our journey... Fondly, Sara

I cant thank you enough! I have received more support from your messages than I can even write. Thank you for your advice and experience and empathy. So glad I joined this website. Peter, I cant stop thinking about your entry, and thinking about how I was a few days after my Dad had a stroke. It is a terrible place to be watching your Dad suffer and have so many unaswered questions. You came to a great place to voice your worries and concerns. Just to give you my perspective, my dad was in almost a coma for 5 weeks (starting april 19th) and he is now home. It is a difficult time for him and us, but the difference a few weeks/months makes is huge. Just hang in there. The beginning is so hard, but it has gotten much better for us and my Dad, and I pray that it will get better for your Dad and you. Thinking of you... Kind regards, Sara

Thanks Ruth, He is on an antidepressant, but he is going to see a psychopharmacologist this week to determine if a different or stronger antidepressant would be better. I had a long and upfront talk with him before I left yesterday about his depression getting in the way of the many goals he has. He slept well last night and worked really hard in therapy today, I am so happy! I am guessing there will be a lot of ups and downs, and we cant get too panicked if he has a few low days. Thanks for the support! I will remember your advice of "patience and persistence". Sara

I really would like to be posting about all the progress that my Dad is making since he has come home (Dad had stroke at 61 yrs old in April 2010). It is a horrible thing to watch. I come home for the weekend to help my Dad and take some burden off of my brother and my step-mom so they can get some much needed "time off". My Dad is severely depressed, almost non-verbal. My brother and I (brother is 27 and I am 32) muscled him into the car for the first time and took him to Best Buy (his request) and bought him a yamaha keyboard to play. He was an expert guitarist before the stroke and hasnt held a guitar since. He seemed happy about the keyboard purchase and played a bit when he got home, but was frustrated that he could only play with one hand. Then he asked for his guitar...a moment we have all been waiting for. I had tears in my eyes to watch him try to hold the guitar with his right (good)hand and pluck the strings without being able to make the beautiful blues music he has made all his life. He sat slouched over to the left for 20 minutes just strumming the strings and thinking of all that he has lost. It was the saddest thing I have ever seen. He seems to want to sleep all the time, and rarely participates in conversation or his therapy sessions. I am a physical therapist and we were doing some walking training in the garage where my brother built a wheelchair ramp and I was giving him an instruction to move his left (affected) leg forward and he wasnt responding, and I looked up and his eyes were closed, like he just wanted to shut out the world. If this keeps up he will never recover to his full potential, and the whole family is just devastated and we dont know how to help him. Any advice?? We love him so much and it is tearing us apart to see him give up like this. Fondly, Sara

Well I have no real background to give you advice, and appropriately it seems that is not what you are looking for, maybe just someplace to vent. My younger sister died of a stroke at age 20 (10 years ago) and my Dad had a stroke in April of this year (just giving you some background). I guess I just feel that when life is crappy, you are kind of supposed to feel crappy for a while! If you dont acknowledge the pain that you are feeling then it might creep up on you later. I keep telling myself that as hard as things are right now they usually get better, the way life ebbs and flows i guess. I think the most positive thing from your post is your awareness of how you are feeling about what is going on in your life. Awareness is a good sign bc many people who have a stroke cannot put themselves in the bigger picture. My Dad doesnt have the ability to recognize that his depression is his biggest hurdle towards recovery right now. So I have lots of hope for you, and hope that these days are your darkest, and that there is light ahead. Kindly, Sara

Thanks for your reply Sue! I will definitely start deferring to the doctor as far as "when" Dad can drive again. It is hard to balance being optimistic with my Dad about things he wants to get back to doing with giving him some realistic insight to his vast deficits. I dont want him to ever lose hope, but its hard when he wants to do so many things that he cant yet do. I appreciate your input. Sara

I am new to this website, but have read many of your experiences with stroke and find this to be very comforting and informative. My Dad had a stroke in april of this year, he is 61 (I am 32). I would like to know any of your experiences with post stroke denial, where the stroke survivor really feels that they can do something that they cant. I dont want to discourage him, but his ideas and plans are not even close to what he can safely accomplish. For example: my Dad is home now and still requires 2 people to transfer him. He has a significant left sided neglect (wont notice anything on the left side of his plate). There is no possible way right now that he could drive, but he insists that he can and is getting angry at my step-mom and my brother that they wont let him drive. (I live 3 hrs away). Does this kind of denial get better? Just trying to figure out how we are going to manage, and would like to hear of any of your experiences with this. Thank you! Sara