I know many of you wise stroke survivors have cautioned me to not give into fear too much but it still rears it’s ugly head. I have not improved at all with walking and spent the better part of two weekends ago in the hospital for observation and an MRI. I have cerebral small vessel disease and there are many different opinions about whether this is causing parkinsonian syndrome. Consult with a hospital nuerologist says that I don’t have this but between the uncomfortable walking plateaue, hand tremor and no relief from exhaustion I am scared at ninemonths out of not being really able to function. I want to see light at the end of the tunnel.
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Sorry you’re struggling @Mbhope it is so difficult to get rid of these fears sometimes. Trying to find a way to accept where you’re at is important but is easier said than done. Have you thought about counselling? A lot of people find it helps.
Sending you my very best wishes.
Ann xx
Thank you for your reply. Yes I do participate in counseling. It just doesn’t seem to be enough when I so desperately wish to be able to have stamina for at least 1/4 of the day, or hike, wear a different pair of shoes, not be stiff or in pain, etc, etc. I know I quite frequently am a big baby wawah on here but I think only people who experienced this can understand. If one more person asks me if I’m"feeling better" I might just scream. No I’m not and unfortunately after nine months I am left with pain and stiffness that nothing seems to alleviate. I feel comforted at least by all of you.
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Shwmae @Mbhope, I know it is painful everyday, I try and seek those intermittent comforts, those moments that pamper myself that only I alone can indulge in, and that is what prepares me for the next ordeal. Stay brave 
Mbhope- HI! I don’t know your condition, but I just want to say that I’ve plateaued several times in my recovery from total left-side paralysis to walking a mile a day. It probably took me a couple of years to get to that place-- likewise with the exhaustion. Now, at the 4 1/2 year mark, I’m not constantly exhausted, like I was at nine months, but I still tire easily and have to watch myself that I don’t overdo like I used to be able to do. Most stroke survivors will tell you that nine months is not very long in stroke recovery. So, take heart. There is light at the end of the tunnel. I’ts just not a short tunnel. 
Jeanne
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I can’t thank you all enough. I find a bit of comfort in everything you say even if we are not all suffering the exact same way.
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Thank you for your reply. I have up until this point always framed negative thoughts this way- taking them out and really examining. Only thing is I feel like this is the only time that maybe they are not so ridiculous, even though diminishing hope is not helpful in the least. No matter what I will continue to try, go to therapy and work hard. In the meantime, as you know, it gets tough. I come here and am reminded that you all are finding ways to move forward.
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Much appreciation for all your comments.
Honestly, my fear is,
Will I ever recover from my stroke pain condition?
Will I get back just SOME of my stamina in order to be able to participate in life more?
Can I be thankful for my ability to drive and even to walk although it’s tough to manage for long distances or when I have to carry anything ?
I’ve been working hard in therapy for the last nine months which is about to end soon but on a positive note I can continue to do some
additional exercises in the community y that I learned in aquatic therapy.
I’m scared.
But I will keep trying.
Thank you.
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“Most of my upper limb improvements didn’t materialise till 12-18mths.”
Thank you so much for sharing that!
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Thank you , Alan–That idea is a really good one, and new to me. I’ll try it next time my mind is spinning out of control. Jeanne
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Your picture just sums it up made me smile thank you
Can anyone please let me know when this fear grips you, what you might say to yourself when the Drs have changed previously positive news?
Just recently I was hospitalized and the consulting nuerologist, without examination said I did not have post stroke parkinsonism. Great I thought. Then my regular nuerologist and said well we could have ten different clinical opinions. Went back to the nuerologist I saw in the hospital on Friday who said his only basis for saying not Parkinsonism is my lack of response to the medication. Not very convincing and I’m gaining a lot more fear once again. They suggested I try another nuerologist speciality, movement Drs Ten months of therapy , a million appointments, medication and no answers, or relief from stiffness and pain. Sorry for the tone of this, just looking for anyone who felt similar or somehow managed to wade through the unknown and lack of continued progression.
Mb hope – Not being a doctor and everyone’s experience being different, I can’t offer any advice about your situation in a physical sense. All I can say is that for a few months after my stroke I went through many doctor appointments and medications. Eventually, a medication was found that I could tolerate and things began to get better. I think eventually the right doctor will find the right way to help you feel better. I can’t praise CBD oil drops under the tongue enough, for the relief of anxiety, and muscle spasms it gave me. Many others find it useful for relief of pain. It may or may not help you. I checked with my doctors first. Although I felt rotten and was depressed during those times, I repeated a mantra to myself every day, usually several times a day, that my mother taught me: “Every day in every way I’m getting better and better.” I think that even if your conscious mind isn’t sure that’s true, you’re programming your subconscious mind. It believes whatever you say. I hope things get better for you soon. I’ll remember you in my prayers tonight. 
Jeanne
Thank you for your kind response.
I get these feelings often and get really upset, I too want to be better than I am just now but like you can’t see the light at the end of the tunnel. Lately I’ve been feeling really low as far as self pity, I re never done self pity , is it because it will be my 1 year from stroke on 18th? Hate feeling like this , I’m not enjoying this roller coaster anymore and want off onto a better track, I used to bre so positive, want it back! Any advice would be gratefully received. Thank you in advance. X
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@triciabaynes sorry to hear you’re finding things difficult at the minute. It could be because you’re coming up to your anniversary. It can be a strange time & can be emotional. Sometimes, if we’ve hit a plateau in our recovery this can impact our feelings too. You might feel like this is it forever. But that’s not the case. Many people have shown improvements can be made long after the stroke. It just takes longer.
If your feelings are having a big impact on you then you should talk to your GP. They can help you work through them.
Try arranging to do something nice on anniversary day, if possible, so you can take your mind of things.
Sending hugs 
Ann xxx
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Dear all ,
I have just read this very long conversation about fear which afflicts me continually at the moment. I made normal progress in the first 6 months and felt reasonably strong . Since then , 4 months ago , my walking has become weaker and pressure in the head and giddiness have increased and now show no sign of abating . The GP has no answer to this problem and as far as I can see there is no treatment that can put my head right . I go nowhere except my local cafe and shops and find visitors exhausting . Progress had completely stalled . How do I know if or when this debilitating condition will get better ? Am waiting for an appointment with a neurologist to try and get some answers . Perhaps a fellow sufferer can help ?
Gay
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@Gay i often get pressure in my head & suffer dizziness etc. I had it a lot for the first 6 - 8 months then it eased a bit then around 12 months it came back again. I’ve seen my stroke consultant who didn’t seem interested so went to GP who has referred me to ENT. I’m still awaiting that appointment & expect it to take months.
I was only saying to my husband yesterday that I can manage with my dodgy leg & poor walking but the dizziness etc really gets me down. I’m trying to find a way to cope with it as I am not convinced it will go…but you never know.
Maybe your GP could refer you to ENT too?
Sending hugs
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Dear Mrs K ,
Thank you so much for your reply. Our condition seems to be one that not many others suffer from . I am hoping to see a neurologist about it, just for some explanation if nothing else . The condition has become pronounced in the last 4 months and shows no sign of abating . Maybe ENT has an answer . I’ll try anything . This is no quality of life !
Gay
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I am the person who may have started this thread and have recently just been discharged from the hospital due to new balance problems. They did discover a new lucanar stroke in the tiny vessels but claim the location would not be causing this new vertigo that I have or strange head feeling. Interesting to hear that others have this as well. I’ll be keeping an eye on any updates from everyone.
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