Message of Hope


#1

My father was in his early 40’s when he told that he had Parkinson’s disease. In July he will be 71.
He has good days and bad days, there are more good days then bad. The bad days consist of him not sleeping, he can go through the whole night without falling asleep, despite him taking prescription sleeping tablets. The lack of sleep results in hallucinations, which at times has been a very scary experience for my mum. When he has the hallucinations, he will be tell my mum that there are people in his room, our he will spend the entire day talking to people that are not there, he once called me to tell me that my older sister had ran away with another man… In his world this is all real, so we never challenge it. He also can’t stand the colour red, if there is anything red around him he will ask my mum to remove the item our cover it. We find that if he has sugary drinks/snacks prior to bed, it tends to keep him awake.

My father has never complained about his illness, I know he gets very frustrated at times but he just seems to get on with it. Since summer last year, his mobility went down hill, so going to the supermarket and just going for a walk down the road, is something that he can no longer do, without support and being in a wheelchair. Since he is more housebound, I got him an ipad so that he can listen to music, he goes to bed with the ipad tucked under his pillow! He spends his day listening to old school music.

I don’t know how my dad has coped with this disease for such a long time. His medicine hasn’t really changed much over the years, apart from the adding of the sleeping pill and the anti psychotic
drug he now takes.

If anyone wants to know what he takes on a daily basis am more than happy to share this information in the hope that it may help someone.


#2

@maccrosh thanks for sharing. It certainly gives hope and something to aspire to
X


#3

Morning, I must admit each time I come in here, the stories I hear enforce the realisation that Parkinson’s is such a cruel disease. I feel lucky, I have managed to remove a lot of the symptoms and also happy to let others know how I did it. Premipexol was a dangerous drug for me and if not removed, I would not be here. Each person has a different experience and it is hard to sometimes relate to the severity , however I do understand exactly what it’s like to live with it. One almost felt, as if living in a mansion and everyday another window closed. I found my creativity in writing and then the windows started to open again. Along with a new Grandson who is now two and my efforts to make some difference however I can. It provides hope that I am heard in ways that gain the attention of those that, together we can all make a difference. All I can say is, sometimes we morn for what we cannot have or have lost, instead of looking for a new way to live. It’s never too late, one is still inside. I changed my mind world and it goe easier. Sometimes the battle of things keeps us in it. Letting goo old and accepting the new is life changing. My thoughts are here with everyone. Julie, big hug


#4

Great advice Julie but so bloody hard to do!
I haven’t finished mourning for my old self yet.
I was in denial for 2/3 years before I got diagnosed.
At 58 I am only focusing on what I have lost. Not what I have left.
I have to shake the feeling that my life is over. That all the best times have gone.
Even without Parkinsons I don’t think getting old was going to be easy for me. If that makes any sense. It sounds dreadfully conceited.
Having always been the person who sorted out other people’s problems, to now need help myself is completely alien. It doesn’t come easy for me.
Hubby


#5

I had similar thoughts and we are both of the same age and like you people all my life seemed to come for support and help.

I have now started to get through that what have I lost phase and I have started to hear and listen to the support that family and life long friends have probably been giving me for the 3 years or so. Life is for living and I am not trying to trivialise the affect PD has changed my life.

Take each day as you find it, plan adventures whilst you still can and easy to write but was not ease for me don’t be that supportive crutch for others all the time make time for you and those around you who you love. A phrase that I use to hear a lot was make may whilst the sun shines. I know use two mantras make memories whilst the sunshine & chose to be happy because it’s good for my health. Neither ease to do but I am trying.

Good luck with getting your head round things and keep strong and kicking PD into its place


#6

Nice one jps 1926.
I am finding it hard to put into place the advice that I would be giving to other people.
I absolutely know what I should be doing.

When I fill up my days, they fly by and things are easier
It’s when I have too much time to think that I have problems.

Since the onset of the illness, which is some five years ago, and nobody detected except for me, its progress has been pretty slow, and probably more noticeable because of the medication I have been taking and the side effects.
I have found little that helps that I have had prescribed by my neurologist.
Azilect is the one constant that seems to work. I often wonder why I only have to take one a day in the morning.
I always start flagging around 4 or 5 o’clock in the afternoon. I tend to take 1/2 a sinemet plus for a boost that never comes and I don’t really do much in the evening except slob out.
I take a lot of natural products, including cbd oil, but nothing seems to be able to prevent the afternoon crash.
Does anyone else get this?
What do you do?
It seems to be a lot of time wasted.
Regards
Hubby


#7

Hello Hubby
I don’t think I have ever replied on what we feel about the effects of the disease. I am 64 now. But I can say I must of already started having symptoms at around 53. At 59 where I was employed for 20 years the owner started badgering about my performance. The owner told me I walked like a old man, and worked to slow and was making mistakes. I had been seeing doctors for different health issues but no one connected the dots. A chiropractor moved my limbs and had me walk. Also of course he checked out my spine. He told me to get to a movement specialist. Not long after I was diagnosed with parkies.

When we hit our 50’s we have already worked many years. We think about how nice it will be to done kissing someones behind for just enough money to support a family. In the states about 65 most retire. You always figure you should have 10 good years to hike, fish, go to the park with grand children, go on vacations with your wife.

It is easy to focus on what we have lost. Because we looked forward to retire and use those functions to finally use it to enjoy those 10 good years.
To say we ever except losing that would be denial. You have a right to be angry.
We have to fight back. You don’t work most of your life to be miserable. I use what is left of my function on being happy. I don’t want to be remembered as a grumpy old bastard by everyone around me before the pine box.
In my case I will never fully except parkinson’s. But every stiff morning you get out of bed my best advise is F Parkinson’s. We go through life once. Why make it all miserable? PWP Tom


#8

Ditto, if I compare what I used to do to now, I’d call me a lazy git. However, I know I’m not, that’s what matters, try thinking an opposite of a negative and it can help. I write and humorous thoughts pop in my mind. I get all my frustration out on paper. Funny though, it reads quite soft and easy on myself. Win win, even if I want to scream, my own writing helps me not, most of the time. Try focus on your achievements day by day, task by task, you’ll be surprised how lighter life can feel. Big hug


#9

Thanks for the feedback.
It helped
H