Hello, I am Christine, living in Australia. My sister lives in another state and was initially diagnosed by a podiatrist as having peripheral neuropathy, then seen by a rather lazy neurologist who confirmed that, and later added that perhaps she had "a touch of Parkinsons". She suffered from falls continually, and deteriorated from a fit 68 year old to someone who could no longer walk unaided and needed help with showering and dressing, cooking and other household tasks. She eventually went into hospital for review and was diagnosed at that time with Corticobasal degneration. It's been a steady decline, with the familiar symptoms of alien limb etc. She has been in a nursing home for over 2 years, as her aging husband could not cope at all, and both my sister and I worried about her safety. In that time she has moved from walking unaided at times, to always using a walker, to a wheelchair and now a tilt wheelchair which alleviates the pressure on her back. She is completely immobile, and can no longer use a standing hoist but a full sling. She can not feed herself, use a buzzer, wipe her nose, etc. Her neck muscles, hands and even eye muscles are rigid. Her speech is severely affected, and her cognitive functioning has deteriorated a lot - she can talk about the past, but will ask me ten times a day what day it is. I believe she is in the advanced stages, as does her doctor and neurologist - I just have no idea how long this will go on for, nor how it will affect her. Luckily she is in no pain, and can still swallow her food, though occasionally this causes coughing. I travel to her monthly and spend 12 hour days with her, and I will be there permanently whenever she is in bed for 24 hours a day.
It breaks my heart to see her like this, and I do a lot of research into the disease. She knows that and asks me questions which I answer as honestly and as fully as I can, so she is well aware of her plight and has ensured she has her power of attorney, will and advanced health care directive all done. Lately, we have documented her wishes for her funeral as this is something her husband was reluctant to address.
Hi Christine, welcome to this site. I know how it feels to watch a loved one deteriorate before your eyes and have specialists give you diagnoses that you don't consider sufficient to explain what you are seeing.
I live in New Zealand and watched my husband go through a similar decline for no clear reason. His decline was interpreted as being due to heart disease by his GP, a heart specialist suggested Parkinsons when he examined him, and referral to neurologist failed to diagnose further snd said 'Come back in 3 months'. At that point an MRI found a mengioma on the brain and wanted to see him again in 6 months. Within 2 months he could scarcely walk and was admitted to hospital as he was suddenly unable to hold himself upright. At my insistence, neuology was called again and diagnosed CBD. Most of other medical staff had never heard of it.
So your experience does not surprise me! CBD is rare outside this forum, but here it is well documented now, like PSP, and we probably understand more about its effects and symptoms than medics do unless they have come across it.
So keep on with your research! Make sure your sister's doctors are aware of what you have found out. It may help them to better care for her. If you are constsntly by her side, you will see subtle changes they may not see. Learn the importance of these tiny changes and make sure they are aware of them so that your sister's care can be altered to accommodate the changes. For instsnce, I noticed changes in my husband's swallow reflex 3 days before it became of major concern. I asked for softer foods and thickened drinks but but I was not listened to, and it took several days for the request to be actioned and filter down to delivery.
That delay caused some anxiety and could have been avoided. You will have enough to cope with watching over your sister without extra stress. I am pleased that she has put her affairs in order, and that she is adking questions about her illness. Her interest in this way will help you to be more open with her. You will have mixed feelings no doubt, but I imagine there will be less strain on you, knowing she understands. My husband refused to consider chsnging his POA, make a DNR, or consider or wuestion the reason for his loss of movement. I found that difficult to handle as I could see it was necessary to do some things, yet he adamantly insisted there was no need.
Do what you can to keep her in touch with her husband while she can communicate! It will be a stressful time for you, with so many additional calls on your time. I found that time was something we could not rely on or determine, but I felt I had a better idea than the medics as to the progression, and I was proved right.
God give you the strength to see your sister through this aweful disease. Document here too how she progresses as there seems to be no 'normal' progression, and telling your sister's story here may help others at a later date as they fight their own battle, or that of a loved one.
Be confident in your knowledge, stay staunch and fight for what you think your sister needs. I found my suspicions were often correct! She seems to be able to communicate with you which is a great help.
Give her some joy if you can; we enjoyed a naughty bit of chocolate at bedtime before i left; remember tales of your youth together; share photos and events. I found the young man I courted, his quirky humour, and devil-may-care attitude was hiding inside his poor brain even though he had forgotten where he lived or how to count. That is precious now!
If you feel you need to shout that life isn't fair, here is the place to do so! We know it isn't and we understand and will try and help you through this!
Hi Christine. Welcome. Sorry to hear all this. Your sister is lucky to have you. Does your sister have friends you could ask to visit her between your trips? My dad couldn’t deal with my mom’s PSP diagnosis either, so she lives with my family. Thinking of you both.
Hello Grace, yes luckily my sister has a couple of visitors who are wonderful - funny though, how so called friends drop off the radar when things like this happen, and the person they knew changes so dramatically from a fit, vibrant person, to someone who is immobile, hard to understand etc. My sister still has her sense of humour though and we do laugh uproariously at times.
Bless you Christine. PSP , CBC, MSA - who had ever heard of them? But yes they exist and those of us exposed to them by seeing our loved ones deteriorate before our eyes (my husband has PSP- diagnosed in Feb) quickly become the experts which the professionals are not. We are in Townsville, Australia and here we have joined a Parkinson's support network as no-one has heard of PSP. And yet they understand what it is like to be in a gradually deteriorating situation. We go to their monthly meetings. We help with fund raising and we feel useful. Maybe there is a Parkinson's Australia group near to your sister. Good luck, Take Care ... Val and Charlie
Hi Val, and thanks for your advice. I have joined a local carers group which is helpful but I live in a small town in Tasmania so need to go further afield to find a Parkinson's support group. It's a good idea though and I will look into it.
I am so sorry. My husband of 51 has all of those symptoms too except he can still walk with assistance but cant het up himself. He sleeps sitthing straight up in a chair because he is so rigid even though he can straighten his legs if I get him into a bed. He prefers sleeling straight up though. He is barely comprehensible although his mind is sharp. Are your mom's fists clenched and is her neck in a rigid doen position? Does she use a neck brace if yes? It is a rotten thing isnt it? My husband had it now for 3 years and is declining so rapidly now. If he is nit to get a full healing miracle like we continue to pray for, I hope he diesnt have to suffer long. 4 years ago we were on a cross US motorcycle trip together. Go figure. Barely comprehensible. I just turned 46. God bless.
You are both so young. My husband is now 72 and i am 71. He was about 68 when diagnosed with it. He is in a chair all the time can not walk or do anything except eat some what . Finger foods are best. His mind is really going fast now. He remembers family still but dont know how to use the remote for t v.
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