Worse since diagnosis


#1

My wife says that she wouldn’t have known that I had parkinsons before I was diagnosed and given medication.
She says I have gone downhill rapidly since.
I barely exercise as I’m always tired. I spend lots of time alone. I have no motivation to do anything other than exist.
Hubby


#2

My other half said I’ve ‘aged’ since my diagnosis & that it would have been better if they hadn’t told me what was wrong with me. Hardly practical but I know what she means.


#3

Dear Hubby

I am sad that you feel so down in the dumps. Do try to do a little exercise - no marathons or anything - just a little extra movement will make you feel so much better. I have nevr been one for exercise, but I have realised how much better I feel now that I have added it iinto my range of activities. You say you have no motivation to do anything. What interested you in the past? There must have been something, and although you may not be able to do it to the same level today, you could still find it interesting… Don’t let Parkinsons rule your life. Give it a kick into touch, and show your wife that life is still worth living.

I snd you my very best wishes and ask if you would like to join my team

Yours

Audrey


#4

I try to think to myself I got Parkinson’s but Parkinson’s hasn’t got me. ,I wish you all the Best and hope your situation improves


#5

Hi,hubby, believe me I know how you feel. My OH works full time so I’m on my own most days and have realised that over the years work took over my life to such an extent that socialising was way down my list of priorities. The result now is that at 60, friends are very few and far between. We have no children so have nothing in common with those that have and have grandchildren. Having been diagnosed at a time in life when the people I know are still working it can be a very lonely existence. If you have children/grandchildren can you interest yourself more in their lives?

However, what medication are you on? I have just been started on Madopar and it has given a boost to my mood, enough to get me interested in some small bouts of gentle exercise, as Audrey suggests.
Having been very active with line dancing and walking everywhere,along with lots of gardening it is very hard not to be able to continue. I now feel it’s time to pursue other options,quite what is going to be challenging. After all we are here for the foreseeable and, having spent the last 8 months since having to give up my job in a virtual prison, I realise I cannot do it for the rest of my life. I also was very tired and still only get about 4 hours sleep a night, but on the right meds perhaps this can be conquered? If it’s any use both OH and myself have been taking a vitamin D supplement and this has helped, but do consult GP first in case it clashes with what you’re on already.
I intend to see if there is a support group as there will be people with similar experiences once I pluck up courage to make contact . Do you still drive? I have a special licence but feel I ‘m better off being driven! I have found that since being at home I have made more contact with my neighbours who are at home all day and so offers of companionship have helped.
Rest assured that you are not alone and there is help out there.
Very best wishes to you whatever you decide.
Jayne
P,S I am in Norfolk


#6

It is like I have morphed into this totally different being. My confidence is shot to pieces. I don’t even recognise myself.
I am actually more at ease with people who didn’t know the old me, because it is the " Old friends" who seem to make the most hurtful comments.
Yesterday my daughter said “Oh don’t play that card again” when I said I couldn’t look after my grandson for an hour because I was too tired.
I hear similar comments all he time as if people think I’m making it up.
Who would?
Hubby


#7

It’s very hard for those close to us to accept what’s happened. My OH and I are still struggling to come to terms with what’s now going on. I am waiting for some counselling but don’t know that it will ever fully register. Like yourself I feel as if I have become some other being.
Jayne


#8

Hi @Hubby,

So sorry to hear that you’ve been feeling down in the dumps since your diagnosis. It’s not unusual for the medication to affect your mood, however, if you find that it’s affecting it severely, then you should probably bring this up with your Parkinson’s nurse so that they can review your medication.

We also have a really useful section on the Parkinson’s UK website all about exercise to help get you motivated as well as info on the different types of exercise that might be suitable to you. You can view the page here - https://www.parkinsons.org.uk/information-and-support/exercise

You can also speak to a physiotherapist who knows about Parkinson’s for more advice and to plan the right exercise for you.

I really hope this helps!

Best wishes,
Reah


#9

I can only agree with what you say. My husband, diagnosed with PD, is always tired, never makes proper eye contact, does as little exercise as possible and is really not the man I married 56 years ago. However, we both try to stay positive and I get him on as many holidays and other interesting experiences as I can and feel that this is the way forward to helping him come to terms with his challenges. He always says he has enjoyed the experiences (although there is little outward sign) so I can only hope he is right. We do try to walk and, although he is exhausted after that kind of exercise, it gets him into the fresh air (although he regularly falls and has to be helped back up - fortunately, he rarely injures himself!) Madopar has not really helped but we will try Vitamin D as suggested by someone on this response. For now, try as Audrey says, to interest yourself in something you’ve enjoyed in the past and do exercise as it improves both general health and brain stimulation. J


#10

Well, Hubby, it seems that you’ve got yourself into a right old state. Been there, got the T-shirts and the videos. First thing I would suggest is to recognise the good Parky days from the bad ones. We all have our individual Parky symptoms and medication helps with these but with varying results and it may help to work closely with your Parkinson nurse to establish what is good and bad for you.

After 3 or 4 years of trial, I had established what I felt was a reasonable quality of life considering my problems such as stiffness, imbalance, fatigue, lack of motivation etc, etc. Then, totally out of the blue, a friend recommended that I try coconut oil as his son had heard that it was a great cure all and particularly for neuro diseases. Down to Holland and Barrett’s to obtain coconut oil in capsules. How much to take? I was, and still am, taking sinemet along with entacapone five times a day, so I decided to add two 1000mg capsules with each dose. After 4 days, yes 4 days, I was a different man!! My body was upright again, I could put my own jacket on, the feeling of utter fatigue and lack of motivation lifted and the fuzzy state of my brain cleared. I took it for a week. and then I stopped to establish if it was the coconut oil or something else. Thank goodness it was the coconut oil!!

After a long trial period I have eAre you a you are a you are a you arestablished that the best dose for me is coconut oil on my toast in the morning together with the 10 capsules a day. The effect of the coconut oil seems to be suppression of the symptoms of Parkinson’s. It really does work for me. It may work for you and as it is a natural product it will not cause you any harm, unless of course you are allergic to coconut.

Hope this helps you and maybe others.


#11

I’ll be giving this a try!
Thanks
Hubby


#12

Hi Hubby,
Sorry to hear bout yr problems. I’m glad that you have already been given lots of good advice.
My mum (diagnosed 9 years) has been experiencing very similar symptoms to yourself. Extreme tiredness, lack of motivation, weakness etc. Unfortunately people cannot see your brain. My Dad lacks patience with my Mum at times just like you have described. If your arm was in a sling no body would expect it to work properly. This might help your loved ones to understand a little.

On a good note we have just had a break through! The Parkinson nurse suggested Rotigotine patches for Mum on top of her other meds. My Mum has emerged like a butterfly from a chrysalis. She is less dizzy, has more energy and some of her ‘spunk’ has returned. So persevere my friend. It will possibly take a long time to find the regime that works for you. Many friends on this forum have been on a similar road. There will be lots of bumps but you will find the right key for you in the end.
Best wishes, Abi.


#13

Thanks Abi
I try to stay positive.
I have got an appointment with my neurologist on Nov 27th so I am hoping to get some of the problems sorted out.
I have tried to not let the illness get in my way but it is definitely affecting my mobility which people notice.
Regards
Hubby


#14

I was diagnosed 17th August and I totally agree with you, I think I’ve been worse since then, I think its the word!!! I dont take any medication and dont intend to until absolutely necessary - the neurologist told me the side effects were horrible.
Keep going, you’ll feel better soon I’m sure - fingers crossed for you


#15

I’m fighting back.
I’m coming off the meds because I want to revisit myself before I started putting so many chemicals into my body.
I have lost sight of what is the illness and what is the side effects of the meds.
I am not accepting that dragging myself around with my head permanently fogged up is the way it has to be.


#16

Hi, saw Parkinsons nurse this week and said I want to reduce dose. I am on Madopar and I hate the side effects and don’t really seem to do anything. Consultant wanted me to go up to 5 a day but it was weird with foggy brain etc. I am reducing to see what happens because as she confirmed, theres no point in taking them if side effects and not adding value. Will see how I go xx


#17

That’s how I feel.
Good luck!
Hubby


#18

yes i agree i am on 4 modopar per day was thinking of redocing myself let me know how you getion


#19

Over the last week I have cut my sinemet from three a day down to two. Azilect from one a day to half and Mirapexin from one a day to half.
I feel more alert already, and people are noticing a difference.
Aside from this I have cut capenon from one a day to one every three days.


#20

Hi H, You are a brave man my friend, I hope it works for you.
Im sorry, I haven’t been in touch lately, it’s spooky I seem to be going into a phase of feeling useless, just like you did some time ago. eg
“Im not the man I used to be”
and
“That’s not me you see in the mirror”
and all the great stuff you have written like,
“Today I cried for me”
It seems to be my turn in the dark
Im sorry H, I just wanted to explain why i have not been on.
Best wishes in your search for some light

Mal.