Need advice badly please


#1

Hello, (wall of text incoming)

I'm new here and I've joined this forum mainly because of my mother. She is 59 and has for the past year been having memory problems, lost interest in eating healthy and exercising and stares blankly at the TV all day, and consistently makes this humming noise in her throat. We recently took her to the doctor after she got a blood clot in her lung and leg and he said that she has mild PD. The problem is that ever since she got back to the hospital I swear she has gotten worse. She always counts certain objects and keeps tracing patterns on the furniture. She has very little self-control and keeps buying sweets and soda, and is almost completely oblivious to her environment unless I say her name. Her speech has degraded to the point that now she can only say "what," "no," "yeah," and very basic sentences. She no longer enjoys any activities that she used to(checking her email etc). She also seems to have a bad case of dementia and just yesterday she was waiting outside the house when I came back from college and asked me to take her to the train station to go to Leeds, her hometown. Only problem is that Leeds is in north Yorkshire, and we live in La Habra, California. It's like she is a completely different person now, and I'm having trouble wrapping my head around it. It's putting a lot of stress on the whole family, as my dad is the only one working, so he has to take care of me, my two adult brothers, along with my mother. I have been searching for anybody I can talk to about this issue, and right now I really do need all the info I can on this terrible disease. Is there anyway to restore her memory or at least help improve it? Can this disease be cured naturally, or do we need special medication(Her current meds aren't helping at all.) Is there anyway to stop any of her current symptoms, such as the humming? I'm so sorry for this block of text, but I'm completely distraught at her condition and am out of options right now.

Thank you so much for reading


#2

And if you need any of her symptoms in greater detail please ask and I will try to answer as best as I can.


#3

Hi Lily Jean

I'm so sorry to read about your mother and your family. i have to say *I am no doctor* - but what you're describing doesn't sound (just) like PD. I see you're in the States, so I'm hoping one of the regular posters from there, J of G C, might be in touch. I'm sure your mother needs to see a doctor.

Do let us know how you get on.

Best

Semele


#4

Thank you so much for your reply Semele. I've actually made an appointment at the doctor's for this afternoon, so I'll see what he has to say about it and if there is any hope for improvement. I'll try to update if there is anything new.


#5

Hello, Lily Jean, and welcome to the forum!

Semele kindly alerted me to your post, because I have not been keeping up with many threads on the forum lately.  I'm a 68-year-old woman who has had PD about 17 years.  I was a Californian for 52 years, now live near Portland, Oregon.  I have no medical credentials whatsoever but do some volunteer work at my PD treatment facility and have encountered many cases of this disease.

It sounds to me as if Parkinson's is not your mother's main problem.  Her doctor called her case mild, and the symptoms you describe are extreme for a newly diagnosed pwp.  Her lack of awareness, her loss of speech, her confusion, and repetitive actions (counting and tracing patterns on the furniture) sound more like symptoms of Alzheimer's disease or some other form of dementia.  Your description brought back memories of my own mother just before her death a year ago at 95.  She had had a series of small strokes and then a major one, and her behavior was similar to your mother's.

All I can recommend is further medical consultation.  Can you get a referral to whatever specialist your mother's doctor thinks appropriate?  You mention that she is currently on medication.  Certain PD meds can cause compulsive behavior or memory problems, but I'm not sure the side effects ever reach the extremes that you have recounted.  I really believe you do not yet have a full diagnosis, especially since her symptoms have worsened .  The doctor has not seen her at her worst yet, right?  I'd suggest another visit to the doctor soon!

I'm sorry not to be able to help more.  But please know that I'll be thinking of you and your family and hoping that you do find help from your medical community there in La Habra.  You sound like a very responsible young woman and I'm sure that makes you feel even more intensely the stress your family is suffering.  I wish you the best at getting through this difficult time.  If you need to talk to someone, please feel free to send me private messages.  I don't know if I can be of any service, but I listen and I care.

J  


#6

Hi J,

Thank you so much for your kind words, I truly appreciate them. I have just gotten back from the doctor, and apparently it isn't PD, it's actually early stage dementia. He is not 100% sure, but he believes that it might be caused from depression, not Alzheimer's. So he has prescribed her anti-depressants for three weeks and a very light exercise schedule to follow, and we are to see if she improves any. Hopefully, it can be reversed, and she will be able to return to her normal self. I hope no one minds me continually posting updates on her condition, even though this is a PD forum:)


#7

Hi again --

There have been a lot of people on the forum uncertain of their diagnoses or suffering other ailments, too.  Keep posting!  We'll be wondering about you and your mother.

I'm so glad the doctor had an idea how to treat your mother's condition.  Depression can be terribly powerful, as I have learned from other PD patients on this forum.  It really can remove a person from the real world temporarily.

Good luck!  And I'll be waiting to hear more from you.

J


#8

Thank you J of Grey Cottage - such very caring and supporive and helpful messages to our new member and to those of us reading.  Much appreciated.

When one has a mix of conditions it is so difficult to know which symtom is caused by which condition.  I've had such a wearisome year that I have only been to one of my favourite stoes twice - John Lewis on Oxford Street.  I was there today and felt so ill - weak, shakey, frequent visits to the loo and mega anxious.  And I say to myself - you are only 68 yet feel like 80.  Then I try to bring it all back to one day at a time and live in the now and am thankful I am in London and not one of the many wore torn countries.

Time for bed - sweet drreams

 

aberwells

 

 

 

 


#9

aberwells4, hello!

When I respond to a post, I tend to forget that many others besides the one addressed will also be reading my message.  So now it's my turn to thank you for your kind words!  

I am 68, too.  Some days it feels like 78, some like 48.  But mostly, I am doing well, with minimal symptoms while on medications.  I live near Portland, Oregon, hardly any competition against London as cities go.  Last spring I was in London about four days, my first visit in nearly 15 years.  In May of next year I'll be there a couple of days as I join a garden tour group.

Your day-at-a-time approach is a good one, I think.  It usually works for me in keeping my mood upbeat.

Best wishes,     J


#10

Hello J,

My month of birth was May - just checking whether we are twins!

Best wishes to you too.

Aber

 


#11

No, Aber, we're not twins.  I'm older than you, with February as my birth month.  Do you find it as hard to believe as I do that our 70th birthdays are just around the corner?  It doesn't seem possible that I've lived long enough to see age 70 approaching!

Wishing you a good day, one on which you'll feel more like 40 than 68 --

J


#12

Hello J, good to hear from you.  Having asked myself how old i have felt today - 55 popped into my mind!

I walked around my park with a young volunteer from the Marie Curie charity - some time back I asked for some support - since the abdo surgery which was a year ago last weekend - I have felt so weak and have lost a lot of confidence - so we are going to meet once a week and walk around the beautiful park.  Hopefully this will lead to more walking on my own.

Like you I find it difficult to believe that I am 18 months away from my 70th birthday.  The fifties and sixtiess seem to be passing so speedily.  My aim now is in planning how to spend the next few years.  Having retired from work and voluntary work and feeling oontent with a major declutter, I find myself in that place of needing to build a new routine.  Soon my bathroom and loo will be made into one lovely new wet room with a large door - recommended by the occupational therapist just in case I eventually need a wheelchair.  Very fortunately funded by a disability grant.

Not sure that peersonal chats like this are okay on here?..

 

Wishing you a pleasant evening

Aber

 

 

 

 


#13

Hello, Aber --

Yes, personal chats are okay.  They're open to everyone, of course, but most of us don't mind if others read and join in.  When you want more personal chat, you can send messages directly to a forum member by using the "messages" part of your account.

I'm glad to hear that you now have a way to get some exercise without fear of falling or being unable to continue long enough to get back home.  Exercise is so important to us pwp.  I go through periods of intense exercise and then slack off sometimes.  But I always keep up with daily walking; I consider that my minimum. Here in Oregon our winter winds and lower temperatures have begun, so it takes a lot of bundling up for my morning walks with my dog.  At least snow has not yet appeared in any forecasts.

Have a good evening!      J


#14

Hi,

It's been a couple of months since I last posted here, so I'll be posting an update on my mom's current condition. She has been taking her antidepressants for about a month, but unfortunately there has been no sign of improvement, and on the contrary, it seems to have gotten worse. She can no longer cook or shower, and her OCD is just as severe. She has also begun experiencing these episodes where she keeps trying to leave the house because she thinks we're going out somewhere. I've tried to get my dad to take her to the doctor again to see if there is anything we can do to at least improve her condition, but he seems content to just let it happen and act like everything is ok. It's so frustrating and it's caused a huge rift between me and my dad. This past month I've just felt so angry and depressed about everything, and I hate going through every single day feeling like that. My mom's next appointment is coming up soon, so I'll make sure to inform the doctor about my mom's condition, and hopefully he can suggest another treatment. (Sorry for the angry wall of text, it's 10:00 pm where I live)

A little off topic, but does anyone know if there is a time limit to treat/reverse dementia? I've been looking at various websites, but I haven't been able to find any information on it.


#15

Hello Lily Jean

I`m sorry that you have n`t seen an improvement in your mother`s condition.  My husband has some dementia, not too bad at the moment.  He has Reminyl to help his memory plus Vitamin B12 and folic acid.  He was originally given Aricept but it didn`t agree with him.  The change to Reminyl  went very smoothly.  I don`t know whether this prescription is only suitable in the early stages so might not be suitable for some-one whose symptoms are more complex.

I find that websites that give information about living with Alzheimers are very helpful for all types of dementia so perhaps you could take a look there.

Best wishes

Hattie