I feel like I'm writing on this board more and more (which scares me a little), but I feel like I'm noticing more each week. So here's what I've noticed in March alone:
3/3/21 - memory is getting worse, short term, a lot longer time periods of hesitation when she's trying to think of what to say or what word she's looking for
3/11/21 - dystonia of the jaw (brand new) first sighting of this symptom in her jaw, more pain in the left side of the body, holding a phone for too long makes her left hand so stiff she can't open it, but she does yell out in pain when she tries
3/21/21 - emotional breakdown worse than anything to date (this was on my bday), also her gait went from about 10-13" of a spread to inches
I know my mom is scared, sad and sometimes wants to give up completely. This disease... it has stripped her of everything she loved and I can't imagine how that feels. I try to be strong and comfort her and all she can say is how sorry she is. I'm not sure what she thinks all of the time, but I am an empath and know that my heart is trying as much as it can, to put itself in her position. Last night she said she was having trouble getting out of bed by herself and I suggested we look into a night nurse to come and stay for the evenings that I have to get up early for work, to which she said "I'm not sure what the difference is between that and a home". The only difference is she won't be with me, but I think she would get more help medically... But with Covid, I am reluctant to send her to a home when I'm not sure I can get her whenever I want to get her...
I'm not even sure why I'm writing this. I think it's mostly bc I know others here know how this is and how this goes, but this is my only true outlet. My father, step-mom and my partner are all HUGE for me as far as being my support system, but sometimes I feel very alone in how I'm feeling when I am the primary caregiver. And I'm not sure I even have a question anymore, but I do feel alone when I realize I'm not sure what to do or if the disease is progressing so much faster than I want to admit, or if maybe she'll be like this for a while longer. I just don't know... And there are no definite answers either, which is maybe why I'm having a hard time internally.
I guess my biggest question would be this... Do I send her to another doctor to check up on her or do I wait it out a while longer? Her neurologist who has been working on her case since symptoms started, is no longer seeing patients. She wants to see someone else, but I fear it will only be the same result which ultimately brings her overall morale to a very low place.
I know every patient is different, but after reading so many posts I have to be open to the reality that maybe this year will be the worst yet.
I hope everyone reading through this site is finding comfort and strength. No one really prepares you for something like this, but I do know God only gives us as much as we can handle, so if you're here - you are strong!
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ARutzen
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my wife and your mother share many of the same symptoms and sound similarly advanced. My heart goes out to you and her. PSP being a progressive disease, chances are very strong that this year will be the worst yet...until next year. You have it right when you say there are no definite answers, and that God will not give us more than we can handle. I cling to that notion to the point that it has become my favorite prayer. Everyone progresses differently here, but everyone ends up at a similar place. Hang in there, and I will too.
Regarding finding a new Neurologist, if you can continue to see your retiring neuro and you are happy with them, then my advice is to stick with them. I read a lot of research and we participated in a big clinical study for a PSP drug. There is a lot of research going on, but it has not produced anything remotely like a cure yet. A new neuro isn't going to have a new approach or a new drug in the pipeline. If there were anything like that, we would hear about it here.
You have to do what you and your Mom are comfortable with. If you really want a new Doc, get one But don't expect too much.
Dick,Thank you for your response - I figured going to a new dr wouldn't be much help and I didn't want her to get even more upset - so I'm leaving it up to her for now. I pray you and your wife are doing ok and taking things day by day. All my love
Sounds like you are doing a great job supporting your Mum and you have good support yourself but it is still so very hard, I know. My Mum was very resistant to getting outside help and even when she had it , would still question it, though I think that was partly to reassure herself I thought the cost was justified.
She was usually persuaded it was worth it because it meant she could stay at home & that is what she wanted. Even though she had to have people in to get her up, help with all personal tasks, feed her & put her to bed, she still had far more control about how she lived her life staying in her own home, than if she's gone into a home and I also stayed in control of things. There was no medication that was given that either Mum or I wasn't happy about, things that worried us, we consulted our Community Matron about & they were sorted if they could be. Mum decided what she wanted to eat, wanted to wear, watch on TV etc etc
I would strongly recommend that you get outside help. Having carers coming in helps spread the burden for you, gives your Mum someone else to talk to / listen to, which helps with helping your Mum to feel connected to the outside world. Mum liked to hear about carers children and it gave her something to talk to me about as well. (I use the term talk here quite loosely, as I sure you understand, as the disease progressed we held conversations in different ways)
Carers started out as strangers but the good ones very quickly struck up a rapport with mum and became friends to both of us. They supported me & suggested things to help Mum, I really wouldn't have been without them. They suggested equipment ideas, knew when to call in an OT for a reassessment, suggested things Mum like to eat. They were worth their weight in gold.The poor ones we asked to be replaced & because we had a good relationship with the agency they took our concerns seriously & acted upon them.
With regard the Neurologist, I found this one of the more depressing things, Mum would get her hopes up before an appointment that they would be able to offer something to help & of course they never could. The whole performance of getting to the hospital, finding a parking space, the futility of the appointment & getting home again was so stressful that we stopped going & after sometime the Neurologist actually did a phone appointment which workedd much better.
Good luck with it all, you are doing a great job and I am sure your Mum appreciates it so much. Give her a hug from me, because we all need a hug to make the day better
Hi there,Yes right now I have a caregiver coming 3x a week, but I'm considering the reality that she may need to come each day while I'm at work. She's been wonderful and (you are right) mom really enjoys her coming and hearing about her family and laughing. And yes I agree with the neuro thing too, she was doing phone appointments, but I know she feels like if someone could see her in person they would see how she's progressed. Although I don't think that will change anything that they tell her. I think sometimes she just wants confirmation for herself too... but I'm leaving it up to her. If she feels like she wants to do it (even though I feel like I know it is a little pointless) I definitely want to give her that if I can. Thanks again
Hi there, my mum has just been diagnosed with CBD and I have been her primary care giver for years and noticed a massive decline in health. Although mum lives alone, I still help out with all her needs. I practically work full time, have an 19 month old baby and just feel exhausted and so fearful of what mums future will look like and feel sad every day for her. My heart goes out to you as I know exactly how you feel! X
Oh my it sounds like you have a LOT on your plate! Very admirable though - Can I ask how many years your mom has been diagnosed? Mine was officially diagnosed Dec 2019, although she had been dealing with the odd symptoms for a while. We estimate that this is her 7th year with CBD, so I am taking note of the time she's had it and see how it can change rapidly at times. I hope you get some time to yourself to recoup - I find when I'm overwhelmed that I need to take a break and have some alone time. Even if that's only 20 mins. Much love to you!
Hey, well she had a brain haemorrhage in 2012 but recovered quite well, then about 4 years ago we noticed a decline., things such as a tremor, slight loss of memory,
Then from 2018 she had number of falls and as a family knew there was something not quite right! We had lots of assessments and even seen a psychiatrist who was querying vascular dementia 😕
I’m a nurse so I just knew it was something else, therefore we paid privately and on Friday she was diagnosed! I could have fell off my chair in shock. Every time I go and visit my heart is pounding as I don’t know what to expect when I go in!
She has been through so much in her life and it’s just so unfair!
I'm so glad that you're a nurse and had the insight to realize there was something else. Even though the diagnosis probably wasn't expected, that is amazing that you had the instinct to search for more answers. Mom has fallen a few times, but luckily nothing that has hurt her. And it is so unfair - I hope you and your mom find some peace!
Hi ARutzen!I'm sorry PSP/CBD/ etc. has entered your family.
The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.
These kind of diseases manifests theyself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.
I am not a phisicyan.
During the 8,5 years in which we ere living with PSP I have been collecting our own experiences, symptoms and solutions and that of other members of the chat to offer some notes as a suggestion to PSP/CBD patients and caregivers. The mentioned notes are made with good will and with the best technical criteria that I could contribute, thinking above all in the support of the caregivers
Wishing the best for you and your family and if the notes-document with our experiences and our informations are of your interest, do not hesitate to let me know to send it by the private mail of this chat.
Hi there . I have been wanting to reply to you for a while but couldn’t get the chance . My own mum who has COPD ended up in intensive care with a very bad chest infection. She is 83 and has now made a full recovery and back in her nursing home . I was her carer for 19 years and was still looking after her long after I was diagnosed with CBD . My mum has dreadful anxiety and very poor mental health . I’m telling this as I can speak as a carer and a person living with CBD. From my personal experience as a carer you need all the help you can get . I would most certainly stay working and bring carers in to help if she needs assistance when your not there . In my mums case she wouldn’t allow carers in so I had to put her into a nursing home . This was only a year ago and with covid it’s been a nightmare but I know she’s getting the help she needs ,24 hours a day ,that’s something no one person can or should ever try to do . I now have my mum back as my mum and not my patient ,our relationship is so much better and even tho she won’t admit it ,she’s very happy .She can use a mobile phone and has a room with a front window so we can window visit all the time .
You are so young and I think you are incredible to look after your mum . CBD affects everyone differently, we all know this now . I think your mum is struggling getting out of bed because of her weak side , is it her left side ? I feel the strength in my left arm is getting worse as it’s practically useless .I leaned over the sofa to grab something the other day and couldn’t get up as my arm didn’t have the strength to push me so I was stuck there until my husband heard me and rescued me . We had a laugh about it because you have to 🤪 I’m going to try and do some light weights as I can still hold things with that hand and try and build the muscle up , I don’t know if your mum could do something like that ?
I agree with everything on this site about the neurologist. When I first met mine he promised me all this support and attention . After I got all my MRI scans ....PET scans ... DAT scans ... lumber puncture ...nothing .
After I’ve parked up,went in and waited 2 hours after my appointment he gives me 5 mins and gets a nurse to take my blood . I explain to him how my hand hurts as it’s now totally out of shape , my foot hurts and my toes seemed to be curled almost fused plus my big toe in that foot seems to be separating from the other toes he just says right and writes something down and leaves . He doesn’t even look at them.
I had to ring and arrange for an appointment to see him as I had heard nothing in a year and a half and his secretary asked me “why I wanted an appointment ,did I think my condition had regressed ” This baffled me as to how to answer as I’ve never heard of anyone recovering from CBD. 🤬 . When I explained to her my speech was worrying me as in I’m forgetting words and slurring and stuttering a lot especially when I’m stressed she advised me to call my GP and asked to be referred to a speech and language therapist , if I had have known I did this through my GP I could have done that a year ago !
I know more about my conditioner from this site and honestly I don’t think some neurologist know what to say to us or what to do. I don’t like to be so negative about this but it is what it is . So I don’t think you should waste time looking for a new doctor .
Sending you lots of love and prays and remember you are only one person x
I hate to hear how the doctor's have been treating you and others here. It really does make you feel bad because you know something is wrong. I really do hate to hear that... You said you can feel the strength in your left arm is getting worse - my mom's is exactly the same, and I actually set up a small gym for her at my house so she could try to get that back, but it's getting harder for her to even try. Within this month, she has really lost a lot of strength overall. She has fallen a few times, luckily nothing that caused any damage, but she has become a lot more unstable than she was last month. She told me last night that she's having more issues getting out of bed to use the bathroom and wants to start visiting nursing homes. As much as I want her to stay with me, I know I won't be able to take care of her all day and night if she is unable to get up on her own. I did tell her about you and she was interested in communicating, but just hasn't had the ability to yet. hopefully I can link you guys...
Sending my love and prayers from Atlanta! please keep in touch and know we are right here for you!
I personally speaking would look at a home for her . There are some really good ones out there and she might feel less stressed . I know that’s what I will be doing . I looked after my mum and I would never put my kids or husband through that . I now see mum almost everyday and call her everyday and she much happier and has made friends . I have started looking at some for myself when the time is right .... it’s hard to think of it but you have too . My friends all drink , smoke , never exercise and are all over weight . I was the health freak lol just goes to show . They are very upset by all this but I’m ok . They promise to do my nails , tan and makeup when I can’t manage lol
Please look after yourself that’s what your mum would want
Yes mom actually told me last night that she is ready to look at homes to see what is around and see where she would like to be. I do think (mentally) it will be good for her. She's confined in my home every day, and even though a caregiver comes, I know it's not very fun for her. We had discussed that when she either couldn't walk anymore, or if her dementia got really bad, that those were the signs it was time for a home. Sadly... it is coming and I think it's faster then either of us wanted it to, but I know she doesn't want me to take care of her indefinitely. My only issue with putting her somewhere right now, is covid and the restrictions they still have. I'm glad they do - don't get me wrong - but if I can't get her when I want to, I just feel like I should keep trying. But... ultimately it is her decisions right now.
I am a health freak too and I can't even imagine the affect that CBD is having on you. I hope you can find some new ways to exercise and try to stay in that lifestyle. Maybe there will be new activities you find that you really enjoy. Prayers to you!!
Some of the homes here have had new admissions . I think now here in Ireland they have all had their vaccines , how is it there in Atlanta ? They will probably put her in isolation for 10 days but I found mum was happy with that until she got use to it and then she was ready to join others .... I really think it’s the right decision for you both .
I’m lucky I can still run a bit with no pain . I find walking more painful which is strange ! Thanks to some of the people on the site my consultant has now offered me Botox injections in my foot to see will that help . He has never suggested this to me and was surprised I knew about them ... so thanks to those who have suggested them ? I’ll let you know how they go and see if it would help your mum..
Yoga has been great also although this gives me nausea ? It has really helped me straighten my left arm which was folded over my stomach ( as if I was carrying a raincoat ) . I can now get it right up straight . It helped with balancing also , although covid stopped my class I found a few good ones on utube ..
I wish you all the luck in the word with finding a good home for your mum xx God bless
How odd that walking is more painful... I wonder if it's because of a (typically) slower pace so maybe you're having to put more pressure on it for longer... that's the only thing I can think of.
Vaccinations here are finally available for 16+ and I know people are getting them. I'm going to try to get in line now too. Mom and I have talked about going to look at homes and I think we will start doing that soon. We lowered her bed so that is helping (for now) and letting her have some independence to stay with us a little longer, but I will keep you posted on how these visits go.
She is doing some PT and we found videos on YouTube that are for her specific issues, which I think you both have the same struggles currently, but it's called LVST ( I think... ) and if you youtube that you'll be able to find the PT she's using too. It does help her movement.
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Wrong and rights
Maureen Hurst
Mom-questions
Just diagnosed
Not sure I can cope anymore
