Re: It's getting tough--Parkinson's spouse
I am 63 and was diagnosed w/ PD 3 1/2 years ago. I am an RN. I worked for almost 2 years. It took awhile to decide to tell people at work. I don't have upper tremors. I have slowness & stiffness of gait. My depression and anxiety are my most debilitating PD symptoms or my "P.D. cluster" as described by my Movement Disorder specialist. I too have fatigue as it is part of P.D. It takes me much longer to do normal activities of daily living.
What I have experienced is that nothing exacerbates PD sx like stress. The stress of working FT at a job where "no one knows" would add to the stress and progress his disease.
When I tried to switch to a less stressful job I experienced a cognitive decline as I was going from something familiar to a whole new system. I recognized my inability to continue working FT before someone else did.That would have been devastating for me.
I then had neuro psychological testing. The results of the test coupled with P.D. itself resulted in being awarded disability in a month.It took 5 months to get my first check.
I still grieve the loss of my former professional life. It's also a struggle to have my income reduced by 70% but we're adjusting.
I have better quality of life since not having the pressure of "acting as if " at work. I now have the time and energy to take care of me to prevent my P.D. from progressing faster than it would have had I kept working.
Excercise is essential for body and mind. I am able to maintain my independence because I have the time to take care of me.
My partner of 6 years gets frustrated wiith my slowness, fluctuation of energy, etc. but I couldn't ask for better support.
It's important that the two of you talk about your feelings together as well as each of you benefitting from individual counseling in addition to P.D. support groups.
Your husband without a doubt has much apprehension about the progression of the disease and will there be someone there for him. It's a sad fear we all share as nothing is certain in life. I remind myself that I have no choice but to accept the disease, but do have a choice to not let it define me.
Keep communication open.Know that money isn't everything. It may be time for him to realistically assess his ability to remain doing what he did before P.D. for the stress is only going to progress the P.D.