A DiabetesTeam Member
I think this will be more of a Vent then a Rant today - got into a heated discussion with another T2 at work and it set me off.
Why I Love Big Pharma
A day in the life of my wife – Stage 4 Parkinson’s
Daily Meds -
6 AM, I dispense her meds because she can’t quite manage on her own –
1 Levocarb – fast acting dopamine – chemical needed for muscle movement
1 Levocarb SR – slow acting dopamine
1 Quetiapine XR – a schizophrenia/bi-polar drug that prevents hallucinations (side effect of dopamine)
1 Escitalopram – treats anxiety, panic attacks and OCD – more dopamine side effects
1 Rivastigmine – improves neurotransmitter function (brain is fried from other drugs)
1 Pregabalin – treats the nerve pain caused by the muscle stiffness when she is catatonic
Potassium – used to improve kidney/liver function bombarded by residuals from the drugs (I don’t even want to know what damage is being caused)
Vitamin D –protect against bone loss. She falls a half dozen times a day when her muscles stop working at the wrong time so needs strong bones
Day program Monday through Friday (for MS/Parkinson's patients)
9 AM her driver walks into the house and dispenses 2 X Levocarb, because by then she can’t get out of the chair
Noon 3 X Levocarb and 1 X Levocarb SR (dispensed by staff)
3 PM 2 X Levocarb dispensed again by staff - she often does not have enough function to pick up the pills
4 PM they bring her back home
6 PM 2 X Levocarb and 1 more Rivastigmine - usually gives her enough function to feed herself at supper and restores enough function (but not always) so she can to put herself to bed at 8 PM.
9 PM – 1 X Levocarb SR (have to keep the heart muscle and diaphragm working), 3 X Quetiapine (to prevent nightmares) and another Pregabalin to deal with overnight nerve pain.
Yes, 24 pills a day dispensed over a 15 hour period so that she can have about 9 hours of “non-continuous” independent movement. She is “catatonic” and can’t even respond when you talk to her much less move for a total of 3-4 hours, has 2 or 3 hours of “assisted movement” and she sleeps for 9.
Without her Meds her heart would stop and her lungs wouldn't function (Heart and Diaphragm, both muscles need dopamine to contract). I Love Big Pharma.
But I do wonder if she can appreciate how tough it is for Type 2's dealing with our nasty disease, our pockets picked by Big Pharma.
She needs 24 pills a day to keep her heart beating and deal with the side effects - we can't eat Pizza and Drink Coke.
But maybe she is better off - she eats Pizza and Ice Cream regularly so can't appreciate "our pain"
You are a great husband to be treating your wife’s illness and I’m sure she greatly appreciates you doing those things. I just lost my brother because of Parkinson’s disease four months ago. I miss him dearly. God bless you both. Take care
@A DiabetesTeam Member You are an amazing husband and such a blessing to your wife. My old Editor has been dealing with Parkinson and I really miss him. Occasionally he will send me a very small email. He says that shaking and his body coordination is hard. His son and his family are caring for him and I am so grateful for their care of him.
I put myself on insulin in 2020. Diabetes is sometimes very nerve-wrecking and makes very little sense. It comes with many problems and is so freaking random.
Big pharma have single handedly ruined my entire life. Profit at any cost! I'd love to be locked 🔒 in a room with the ceo of glaxo smithkline 🥊🥊🥊
@A DiabetesTeam Member Vent all you need. Being a caregiver is not easy (I was a nurse for over 30yrs) so I know how hard it gets. I myself have a hard time accepting that Arm has to help me shower, or with other stuff around here due to my autoimmune diseases. For me I feel like I am a burden to him at times. But seeing it from your eyes and point of view makes me understand why Arm does what he does for me. I in return takes care of Nathan. I wake him up but he dresses himself, I prepare meals but he eats it himself (some foods such as meat we cut for him as he has a hard time with certain tasks), I make sure he brushes his teeth before bedtime and washes his hands and so on. For me caring for Nathan is simple and keeps me going, but on bad days sometimes just having foods in a can or frozen I prepared on good days helps so much. So I invent meals at times, the other day a can of mushroom soup, beef I had frozen after cooking it and added a can of corn, made a meal. Winter months are the worse, sometimes Arm has had to get me up and out of bed. Sometimes I drop things such as glasses and cups or dishes and they break and Arm picks them up for me, never gives me heck for it either, he just gets up and does it without me asking. There are things I cannot do for myself anymore either, but Arm is so understanding when it happens. He is not picky with food, he is more then happy when I open canned veggies and make a mix of whatever is easier for me to make. Sometimes on bad days he wakes up Nathan and makes breakfast as mornings for abour 2 hrs I am quite stiff from Arthritis. We always leave a bowl, a cup, a glass, a dish and utensils in the dish rack to make it easier for me to make breakfast for Nathan, not having to reach up in the cupboard. We adapted to what I can or cannot do over the past few years.
So from someone who is heading towards what you are going through with your wife, requiring help for simple things such as a shower that others take for granted. I know what you feel like. If I managed to get off diabetic medications, it is because of the frequent posts and answers you gave me and many others. You have given us hope when it comes to Diabetes care and management. You are always there for us all, glad you feel you can vent here also. Your the big brother everyone needs in their lives. The good old expression, you can lead a horse to water, but you cannot make it drink it, it has to want to drink to do so. Your coworker obviously has high hopes in Big Pharma without helping herself. Living with 18 diseases with no cure, some since birth, Big Pharma has not helped me much but to get side effects and allergic reactions, nor finding a cure for JRA (42 yrs ago). I had to learn about all my diseases and Diabetes is the easiest to manage for me thanks to you and many others in this group, as I can control what I ingest, that is the only thing I have a say in which has helped so much.
@A DiabetesTeam Member...wish you could bottle and sell your attitudes...but then, you wouldn't sell it, you'd just give it away (oh ya, you just did). You are an amazing individual. Many, many people cannot do what you are doing for their own reasons. Your wife is so lucky to have you at her side 💕. Remember to also take a break once in a while for your own mental and physical needs as well so you can continue to be there for her. Sending you many hugs 🤗 and caring thoughts ❤.
@A DiabetesTeam Member, Being a primary caregiver for a loved one can be tiring and stressful, especially when dealing with your own health issues and daily life. This group is wonderful, that we can vent when needed and have support. Have you heard of respite services? It gives caregivers a little break . It’s something you could ask your doctor about if you wanted. I’m not in exactly the same situation, but my brother was born with Spina bifida and hydrocephalus & know what it is to care for someone who has high needs. It’s good to talk & we are all here to listen. 💚
@GrahamLamb-Nthing you need to be sorry for. I totally agree with you about your co-worker. We diabetics need to take responsiblity for ourselves to the extent that we can. It's OK to be down once in a while but whining about our disease does not help.
I respect your decision to have your wife at home, as long as you can. Its the right thing to do.
You are a good man Graham Lamb.
GrahamLamb; God bless you. Prayers are with you and your family as you try to fight the two diseases. And yet you still have time to give us such wonderful information. You can vent all you want; I will listen always. Take care; both of you
@A DiabetesTeam Member you have your hands full and are an angel. I think about all my hubby has done for me over the years. How blessed are wives who have hubbies who take on so much. Also, you need to let down from time to time. When it builds up it isn't good for your health. Glad to be an ear.hugz my friend.
@A DiabetesTeam Member I simply do what must be done
Regardless how I feel about my situation will have zero effect on the "facts".
I could curl up in a ball and be depressed about my lot in life - would only complicate trying to deal with by adding yet another condition to try and manage
I could wallow in self-pity which would do nothing more then cause me to neglect, to some extent, both of our conditions making both worse
I could toss in the towel and simply put my wife in a care home but feel I have at least some responsibility to look after her as long as I am capable. If it gets to the point where "she" is suffering because I can't do enough for her, then it will be time. But at the moment that seem a long way off to me.
I felt like choking people whining on the evening news about how they couldn't visit Mom in her care home during the pandemic, how poorly she was getting treated due to staff shortages, how these "nazi's" were keeping them out of the building.
But never once did it bother them quite bad enough that they pulled Mom from the home (which was always an option) and looked after her themselves - no, can't be burdening "me" instead just criticize the care that someone else is giving that they are not willing to provide themselves.
So just like my attitude toward diabetes - it doesn't care how I feel about it, how difficult it is to deal with, how much it has messed up my life, how unfair it is that I got it and dozens of other things people obsess over.
None of that, no level of depression or whining or drowning in self pity will help one little bit, so I just get on with it.
Because like most things - if we aren't going to do for ourselves, then who is going to do it for us....