Young onset partner


#1
Hi all, It's with a sense of longevity that I write this post, as my husband is only 38 and was last year diagnosed with Parkinsons - and I expect these type of forums may be in my life for the rest of my life (wherever technology takes us!).
We are moving between utter terror for the future, and complacency, as he isn't badly affected as yet.
We have a three year old, and sometimes I feel sad that she will never really know him as he is now.

We have been lulled into a false sense of security with him starting Azilect, and we are delaying the inevitability of his needing to start Sinamet or the like. His tremor is getting worse already (he didn't have one at diagnosis four months ago), and he has been exercising madly to try and delay the progression but struggling even to get up in the mornings.

The biggest problem for me is his utter lack of motivation. He's actually been like this for years and now I know why. It has always frustrated me immensely how long it takes him to do things, how much he doesn't want to do things - I've always been so motivated. We are so opposite in that way, and I'm scared about how I will cope.

His diagnosis has come at a time when a lot of other things are going on - life has suddenly become very emotionally hard for a number of reasons. Additionally, I myself lost my legs 12 years ago to meningoccocal - so my capacity to care for him will be limited, both physically and emotionally. I guess I'm mainly worried about how I will cope and feel very guilty to admit these feelings to him. :frowning:

#2
Hello and welcome to the forum Lizzieb, I do hope that you and perhaps your husband are able to find support and answers here. A diagnosis of PD is devastating blow to anybody but I can fully understand how you must be concerned about how you might cope, given your own difficulties.

I have been dx (diagnosed) for 11 years now but, I managed to work full time until my pd caught up with me and I retired from social work 5 years ago.

It sounds as if your husband has chronic fatigue, which is of course one of the many symptoms of PD, as is his shake. You both need to discuss this with his neuro, who may be able to help. I do hope that he will not require levodopa too soon because it only has a 'shelf life' of about ten years and then it doesn't work so well, leaving the patient with very little options. If I could turn the clock back I would certainly have abstained from taking levodopa for as long as possible. I am now at that crossroads having been dx for 11 years and it is certainly a difficult time.

One thing that I would like to mention is, if you have a mortgage, check your insurance because some policies cover you for chronic conditions and PD would be covered under that umbrella. At the very least you may have at least one worry taken care of.

In the early years after dx most people worry about the future, how the bills will be paid ect and in yours and many other people's cases they worry for their children. All that I can say is that, in my 26 years of working as a children's social worker, I found that they are so very accepting and versatile. I am sure that your child will adapt to daddies condition as will you. It's also very important to be aware that Pd is a very personal condition and as such it's rate of progress will be different for all.

I hope that you will continue to visit the forum, please feel free to ask any questions, there is always somebody that will come forward with an answer. You will also find that when your down you will be offered much support from other users. I look forward to chatting sometime.

regards
Glenchass

#3
Hello, lizzieb --
Life has certainly handed you some difficult trials! I have a few things in common with your and your husband's situation and can understand the feelings you expressed in your post. My case of PD began 15 years ago, when I was 51, so I did not have the early onset of your husband. But as soon as Azilect came on the market, I started taking it. Whether it's coincidence or not, my case has progressed very slowly; I tend to believe in the drug's effectiveness.

My symptoms needed more medication than just a delaying drug, though. My doctor started me on Mirapex (pramipexole) rather than Sinemet, and it actually eliminated some prominent symptoms, such as my right-hand tremor and my awkward gait. Over the years, my dosage has increased to the maximum in order to control symptoms. Unfortunately, nothing has affected my slowness except concentration on my movements. And who can think "Move faster, move faster" all day long? My husband used to get frustrated sometimes, too, at waiting for me to fasten a seat belt or to finish eating dinner.

The surprise life handed us was his sudden death last year. He had planned on being my caregiver, and I ended up caring for him through his last days. Although he had never smoked, he developed lung cancer. By the time of diagnosis, it was already terminal, and he lived just three months longer. It is quite natural for the spouse of any patient to have feelings of sadness, frustration, guilt, etc., as you report. I hope some of the spouses on this forum will respond and share their experience with you.

As for me, I sincerely wish you well in dealing with PD in the family. Try not to look too far ahead, and seek the best medical advice you can find.

#4
Hi Lizzie and welcome. You will find lots of friendly support and advice here, I'm sure you and your husband are strong people and you will find a way to face this next hurdle together. Life is full of challenges but enjoying the small things are what make it good :)