[Amelie]

Hi everybody,

My husband was a technician of photocopy machines and has been in constant contact with the toner.  We thought it could be one of the reasons, but not sure at all.   Any idea from your side?

[Amelie]

Hello,

I felt that during the confinement, my husband who has PD,  who was still working (with some days off )  was at his own rhythm and was quite happy.  No stress, No pressure.   I felt he was better waking up at his own pace, and was more relaxed doing what he wanted to do, or what he could do during the day.

 

[Amelie]

Thank you Jean for all your kind words and your support.  You will be missed but we do understand.

Wishing you all the best. Take care.

[Amelie]

Hi Ally,  Yes we are talking about an early retirement.  He wants to wait and see how it goes.  He had planned to retire by August next year when he will turn 60.  Now nobody knows.  And the neurologist said the best medicine in his case is work.  Which I can understand.  What will he do staying at home all day?  So I am constantly on  alert to see what is best . His employer has been supportive so far.  But how long??  We also spoke about working 3 or 4 days a week, but he does not want to speak to his employer yet for this possibility.  And how true, we cannot make plans anymore.  It really depends on his energy level.  Not easy everyday…

[Amelie]

Hi Jean,  Yes the fatigue is brutal. And sometimes now all of a sudden he just falls asleep in front of the TV (after watching for 5 minutes).  Or else in the morning when waking up he feels a great fatigue and does not want to go to work, or should I say cannot go to work.  Sometimes he makes an effort and after some minutes he will get ready to go to work. And sometimes he really cannot make it.

[Amelie]

Hi Ally,  no we did not suspect PD at the beginning.  The diagnosis came as a real surprise and a great shock to both of us.  We still can’t believe it.

[Amelie]

Now he is also having this extreme fatigue at times.   Thank you Jean for sharing.

 

 

 

[Amelie]

Hi Ally,

The first symptom of my husband was loss of smell.  For years he has lived with his loss of smell. We remember having spoken about it to different doctors, but nobody reacted to this.  Then beginning 2018 he lost 10 kgs within 1 month, and we started to be worried. He went through lots of medical tests, all seemed OK.  He started having tremors in his 3rd & 4th fingers of his right hand. We also noticed that he was doing things more slowly, and he noticed his handwriting was getting smaller.  We went to see a neurologist in October 2018.  And in November 2018 he confirmed that my husband has an early PD.

[Amelie]

Yes Jean.  Thanks for your kind words.

[Amelie]

Well, being a caregiver, I feel exactly as you do.   I have to accept it but on some days I really can’t.  But then back to reality when I see my husband doing things more slowly, saying he is tired, or saying his leg is aching..

 

[Amelie]

Thanks Jean.  I believe nothing can be done.  We just have to accept it.

[Amelie]

Hi Ally,  Yes I have been living here all my life.  My husband is French.  The best part living on an island is the beach, and the fruits in summer I would say – mangoes and lychees……

[Amelie]

Hello,  I live in Mauritius, in the Indian Ocean.

[Amelie]

Hi Jean,  I am 57, and my husband 58, going on 59 next month.  We are both still going to work.  Although this morning he told me that he is feeling tired, and might consider stopping.  Well we will see how it goes…..  And yes it was not at all in our plans to move.  So we are talking about it again and again… in order  to take the right decision.

[Amelie]

Hi Ally,  you made a good summary of it.  Thank you.  Yes I will be taking baby steps as you say.   We have a smaller room downstairs, and a small bathroom too.  So next week I am taking some days off, and with the help of some friends, we will bring a double bed which is upstairs, in the room downstairs.  So then we will have a small room downstairs, which might be simpler to start with. For the moment he is Ok and can still climb the stairs.   This will give us time to think better of the next steps.  Yes we keep talking my husband and I about the good decision to be taken,   and we are simply going around in circles….  So contradictory.  We want to stay positive but at the same time we do not know what kind of future is waiting for us…

[Amelie]

Thank you Debra for the sharing.

 

[Amelie]

Thank you Jean for your kind words.

[Amelie]

Thank you Jean.   Oh how I understand your emotions.

Yes our hearts say ‘this is our house’, but our mind say ‘may be it is reasonable to make the move now’, as nobody knows about the future.

I am the one raising the subject with my husband.    What I am afraid too is that if & when we have to take this hard decision, he is not that well, and I will be alone dealing with all this, and on top will have to cater for him too.  At the same time, we are trying to stay positive and say  it might never happen….  Oh how hard all this is.

 

 

[Amelie]

I feel less alone reading all the articles, advises from all of you.  Thank you for the sharing.

[Amelie]

Hello Ally,  I practice Hatha Yoga.

 

 

[Amelie]

Hi Ally, I have gone back to my yoga class for some weeks now.  Miss one class from time to time, but that’s Ok.  Cannot do otherwise.  So I make the most of it.

 

[Amelie]

Oh no.  Sorry I do not agree at all.  You can be compassionate without having Parkinson.  It is really not a gift!

 

[Amelie]

Yes, it is so important to recharge ourselves.  I used to do yoga, but then had to stop.  I have gone back to my yoga class since 2 months now.  Only one and a half hour per week. And I can see how it helps me.

 

 

[Amelie]

I am afraid how the PD of my husband will progress.  How long will he be still independent.  In which way will he be affected first.   All this is so new to us. And it seems nobody can give us any reply.