Copper treatment

[Chirley]

Thanks Rachael...I've tried to put these services in place myself for Mum and Dad. So have my Mum and Dads GP. Mum and Dad just refuse point blank to let those interfering goody goody two shoes interfere in their business!

I can't even get them to do Advanced Health Care Directives or Enduring Power of Attorneys. Their Wills are out of date. They are both nightmares to deal with when it comes to life's realities. Luckily I have persuaded them to authorise me on their Telephone account, Internet account, electricity account, cable TV account and I pay their private health insurance so I'm already in control of that account. I swear I don't know how my Dad is going to pay his bills when I can't because he only knows how to physically go and pay them in person by cheque. Well, he won't be able to drive for much longer...what then? He shakes so much he can hardly hold a pen. Every day he forgets he has left something cooking and the smoke alarm goes off, I can hear it from my house. I have to phone him and make sure he has it under control.

When I raise these practical day to day realities he gets teary and says he can't cope and he's too old to think about these things, but he won't let anyone help either.

I love him so much. I don't want to leave him to cope with it all. It's not fair...he doesn't deserve it.

[Lifeguard]

You're being put into a difficult position by your loved ones and the impact on your health and well-being cannot be helping your current situation. All I can say is you are a wonderful daughter and your parents are lucky to have such a caring soul to look after them.

Cheers
Rachael

[Chirley]

Good news, bad news.

Bad news first. Second MRI definitely confirms new lesion. I rang brother and asked for help with my mother when my father has surgery next week. The answer was NO. He said he wanted nothing to do with anything! He even said he didn't want to be left anything in any Wills! He is getting odder by the day. He just can't handle anything that might upset his own little bubble.

good news is that lesion is lower on the spinal cord than first thought so will not have as great an impact as I was lead to believe (at this time).

Other good news.

I've had a reality check with both my parents (I have no hair left) and we are getting a live in paid carer with her own seperate living space to share between us. We already have an area she can live but it's a bit rough (new bathroom but the bed/sit needs renovating) but we (should I say, i) have already found someone and theyre starting this weekend. As soon as I get home I'm arranging for the builders to come and renovate the bed/sit and put in a new window, seperate private entrance, air conditioning, walkin robe and kitchenette. She can choose paint colours and carpet.

It's going to be a win/win because it's an Aunt of mine who is a lot younger than my Mum (by 20 years) and is in need of a permanent home and knows my mothers personality problems already. My father is already fond of her because he already raised her as a child, kind of like her step Dad.

I can't believe I've managed this from my hospital bed!

The relief is enormous.

[Sally C]

Hi Chirley,
You are a brave, courageous and competent soul. Your family is lucky to have you even if all don't realize it.
I keep up with your posts and so wish you well.
Best wishes and Blessings,
Sally

[Birgitta-A]

Hi Chirley!
I am afraid that I don't really understand what it means that you are going to live in a paid carer but if you are satisfied with this solution I suppose it is OK. Good luck!
Kind regards
Birgitta-A

[Cheryl C]

Sounds great, Chirley. You are amazing. Well done! Now try to relax and take advantage of being looked after in hospital while you can...

[Marlene]

Sounds like a good plan Chirley. You continue to amaze me with your focus and strength through all of this. You have more challenges than most but seem to find a way to push through.

Hope it's a speedy renovation.

[Chirley]

Thanks everyone. She's moving in tomorrow.

Birgitta. It means I'm paying someone to live here and help look after us. It's my Aunt and she's my mothers younger sister. She's 70 and very healthy and fit and we are all very fond of her (except my mother). She's a very happy, practical person and will be just the right person to keep my mothers moods in check.

I came home from hospital yesterday afternoon and my father has not stopped smiling. I haven't seen him so happy in years. It seems as if a weight has lifted off his shoulders. I think he realises he is not being left alone to shoulder all the responsibility of caring for Mum now. My father is very happily preparing the downstairs rooms for tomorrow.

I only need occasional help with things like cleaning the shower once a week and hanging the washing on the clothes line, changing the sheets on the bed...most of the time I can manage.

It's the relief just knowing my Dad is going to be okay that is the big winner.

[Birgitta-A]

Wonderful Chirley!
Kind regards
Birgitta-A

[Neil Cuadra]

I'm glad you've arranged for paid care, Chirley.

Paid caregivers offer a number of advantages, including experience, consistency, a caring nature, availability, and perhaps most importantly a specific known role to play.

While it might be ideal for most patients for already have a family member around to care for you, it's just not a practical choice for many, and it can be awkward when a family member is stressed or resents the time required for your care over a long period.

For you, Chirley, this could be the best of both worlds!

[Chirley]

I have to apologise....she's 69 years old...I've already offended her!

My mother is on her best behaviour. I wonder how long that will last.

Even my dog has fallen in love with her.

[Cheryl C]

Fantastic, Chirley!

[Chirley]

Oh Dear Lord....first lesson with someone insisting on looking after me....I WILL eat breakfast! Battle of wills....she won!

Hmm

Now all I can smell is furniture polish.

[Neil Cuadra]

You'll be tamed in no time!

[Chirley]

I don't even know if this is worth posting here because I doubt it's going to benefit anyone else but you never know.....

I've just been told today that the lesion in my spinal cord is causing my swallowing and vomiting/weight loss issues. This is not likely to do anything except worsen. I have to have heaps of tests obviously to exclude every other possible cause but the gastroenterologist said that the position of the lesion is exactly right to effect the swallowing area.

I was supposed to see the Neurologist in November but he's called me in early and I have to see him next week so that's a bit scary too.

I almost wish I was back in the days when my biggest concern was what my Hb was or how low my Neuts were.

I hate this Neuro stuff.

[Birgitta-A]

Hi Chirley!
How sad that a lesion in your spinal cord is giving so severe symptoms!

When I read about your copper deficit symtptoms I think you are right when you prefer low counts even if they can be dangerous too.
Kind regards
Birgitta-A

[Chirley]

Well, kind of good news, I think. My spinal lesion isn't as bad as first thought....as Charlie Sheen said.......WINNING!!

Then, I get told, the disease IS progressive, I have got brain damage as well, I can expect a rather unpleasant death. HOWEVER, he can't give me any time frames. There was mention of a brain biopsy but thank goodness he didn't follow up on that.

I was advised to increase the dose and frequency of my copper infusions in the hope that it would have a trickle down effect into the CNS. It was left to me to decide whether I chose this option depending on quality of life issues.

Now that my Aunt is living here I'm more inclined to have treatment more often because I know if I'm in hospital my parents will have someone available to keep an eye on them and help when needed. It's a load off my mind.

I'll have to think about it.

[Birgitta-A]

Hi Chirley!
Wonderful that the paid carer functions so well!

Well many of us consider treatment vs quality of life - we probably all have different answers.
Kind regards
Birgitta-A

[Chirley]

Birgitta, the Neurologist said I was lucky because I had the option of ceasing treatment and dying sooner from bone marrow failure rather than the Neuro disease which he said would be a much more pleasant way to die.

At least at this point in time I feel as if I have an "out" clause in my contract. If I decide to agree to increase my copper treatment (because my Physician listens and delivers the drug slower with more steroid coverage) and I can tolerate it, then, it's a bonus but if I don't like it...I can just keep on doing what I'm doing until I deteriorate to the point that I don't want any more treatment.

It's the first time I have felt I have had doctors that have given me options that are mine to make without any judgments from them. I feel truly lucky to finally feel comfortable speaking frankly about my end of life decisions with them and not have doctors that pretend that it's not a reality.

Some of this frankness may be because I have some brain damage and i have a little disinhibitition (which I am quite enjoying). For the first time in my life I'm actually saying things that I want to say instead of just thinking them. Kind of like having had a couple of glasses of wine. I'm not being inappropriate or anything...just more open. I even told the cable TV man who tried to sell me a more expensive bundle that the one I had was already too expensive for the heap of rubbish they televised! That felt good!

Ahh...brain damage...got to love it!

[Birgitta-A]

Hi Chirley!
It's trye that we get more outspoken if our frontal lobes are damaged - good that you not are being inappropriate.

You for example asked your paid carer to move to you - this could probably have been difficult when you were your old proud Chirley.
Kind regards
Birgitta-A

[Chirley]

I requested to join a MND support forum even though that is not what I have and they have agreed to accept my application due to the similarities in our conditions.

Finally I feel I have some place I can go to ask questions and just talk about how certain restrictions feel both emotionally and physically with people who understand.

Just to be able to chat online with others who face the same future is going to be such a relief.

I'm glad I live in this era where the world really is at our finger tips.

[Birgitta-A]

Hi Chirley!
You know I belong to several support groups - and have done that since dx - though Marrowforums is the only group where most members have the same dx as I have. I have learnt a lot from all groups even if we only have one symptom like low platelets or severe bone marrow fibrosis in common.

Good luck with your new group!
Kind regards
Birgitta-A

[Chirley]

I have been very slack about asking for my blood test results but I asked for some on discharge from hospital today. Was a bit shocked to find that after having had over a year of copper infusions at 4mgs a day for 4-5 days in a row every 6-7th week (now 5weekly).... That my copper level is a mighty...


1......(13-45). but lucky me, selenium is 4.5.....(0.8-1.8) zinc is 50....(10-25)

Caeruloplasmin not back yet.

So now I will be having copper every third week once again.

I have low protein, low calcium, low cholesterol, low potassium, low bicarbonate, high ALP, low D3, low Hb, low WCC, low neuts, low lymphs, low HCt, low RCC

HO HUM....nothing I can do.

I've been put on an oral supplement to increase my protein intake which unfortunately contains yes...of all things....zinc and selenium and iron (I've got liver iron overload) but at this stage I need weight gain so the Doc isn't worried.

I had a new neuro incident at C3-C4 which affected my left arm and I lost sensation from above my shoulder to just below my left elbow. This is a permanent lesion and is apparently a new normal for me. This happened within a 10minute period on Monday. My left ear has also gone numb...I don't know what that's about!

Sorry for the down post but this is my reality...it's better than pretending all is well.

[Birgitta-A]

Hi Chirley!
Too bad that your lab tests are worse and that you have had a new neuro incident! It is true that we have to be realistic - no use to try to convince ourself that all is OK.

Now I have to receive two units of blood every week and Neupogen injections for low WBC twice a week. My platelets are not too low (latest count 96). I take 30 mg Prednisone/day but that dose will soon be tapered and then my counts will decrease.
Kind regards
Birgitta-A

[Chirley]

Sorry to hear your news too Birgitta. We all have to come to terms with our diseases and our limitations. Sometimes I'm more at peace than at other times but there really is no choice, is there?

I came home today just in time to ring an ambulance to send my 86 year old father to hospital with abdo pain and collapse. Turns out the only thing he has wrong is constipation. I could hardly stop laughing about the ridiculousness of it all. Here he is 86 and carrying on like a child from needing a poo for four days!

One Enema later and he is fine....but he won't be when he gets home....I'll make sure he won't forget that in a hurry. All because he takes stupid codeine because his back hurts when he mows the lawn which I want to pay someone else to do but he is too stubborn and insists he WILL do it himself.

I love him but he is frustratingly singleminded. The doctor is keeping him in hospital until Monday to give us a rest...Mum is quite pleased. She is humming a little song and smiling.