My husband is 49 years old and has just been diagnosed with Parkinson's and is taking Azilect for the tremors. We go back to the neurologist in 6 weeks. Any advice for us - both as patient and caregiver would truly be appreciated. We have suspected for awhile, but to actually hear the diagnosis spoken out loud is a whole different thing. Thanks for any advice.
Gap, my husband is a lot older than yours and was diagnosed 5 months ago. He is taking Madopar, three of the lightest dose daily and a slow release at night. I am very interested in the drug that your husband is taking as I had never heard of it and it sounds very effective so I would like to hear of progress. H. has hand tremors only just now. I hope that you get further replies but this is a rather quiet site. We were told that it takes about 6 months to get a correct medication balance and that's been our experience. Noticable effects. H not able to potter in the garden/land as he used to, body aches and he tires quickly. I also think that he is slightly depressed as he is far more negative in attitude than previously. Happy to just sit whereas he was always active....I seem to be trying to be a permanent 'cheer germ' right now!!
cejay, thanks for the response. my husband is depressed as well and has been for a couple of years now...he aches all over, moves a lot slower....I wait for him to catch up rather than he waiting for me. He is extemely tired all of the time...part from depression I think but also he wears out a lot faster. the Azilect from what I have been told seems to slow down the disease, at least that is what has been shown in some studies. I don't know how much it will help with his symptoms as he has just started taking it. But I will let you know. I know what you mean about being the "cheer" person...take care and hope to hear back from you soon...it helps to know someone else who is going through this...friends try to comfort and say things, but they truly don't understand.
My hubby was diagnosed 18 years ago at the age of 51, in the early days he tried to put off taking sinemet, tried vitamins etc.
There used to be a false belief that the longer you put off meds, the better/longer they will work for you in later stages. Well he has to live his life the best he can in his younger years is my thinking.
After about 4 years of on and off meds, we finally gave in and realized it was'nt going anywhere and he had to just take the darn meds and get on with his life the best he could.
He lived a pretty productive life and still does, it is just in shorter stunts thats all, when the meds work good he works like a 30 year old. When they start to wear off, he has to sit back and wait for the next round of "on time".
Every stage of this is frustrating for the patient and the partner/caregiver.
If your hubby is not feeling any better, phycially, with just the Azilect I would ask the Dr. about adding in some sinemet, that is what will improve his symptons.
Depression is very common, in P.D. exercise helps alot. Many people have a bout of it long before the diagnose of PD.
Educate yourselves, but don't overload, it is early days for him.
One site I have found has been my "rock" is the
You can read and ask a PD specialist questions and they reply you.
I also understand about being the "cheer" person and sometimes I think I might be getting on his nerves so I have leveled off on that.
The Zoloft really helped my husband a lot I think. Once a doc told me that we need a certain amount of serotonin to maintain normal moods. When we have something like chronic pain or a medical condition, that stress uses up a lot of serotonin, and so then the affected person doesn't have enough left for maintenance of regular moods like before the problem. Lots of pain management doctors use antidepressants.
clsc, gap and kathy. Will reply in the one message as we all seem to be going down the same road. Thank you for the help and comments. I really do not know what to expect
and it is such a relief and help to hear from others and to get an idea of what to expect and how to help.
H. is now on 3 madopar daily 4.5 hour intervals and a slow release at night. He is far more stable and brighter in himself. The Dr also prescribed anti-depressants which gave H a bit of a shock and a wake up call!! Hasn't taken them yet so hopefully this is a bit of a turning point. Back to the Dr on the 27th when I shall ask about the Azilect. There was no mention of that either by the PD specialist or H's doctor. Had a diabolical 2 years with deaths/alzheimers/cancer in family and H. is a worrier so I wonder how much this has contributed to the onset of PD. He is also having difficulty with the fact that he has always been 100% healthy, good sportsman etc and hates the 'not being in control' aspect. I think that a positive attitude has a great deal to do with good health and do get frustrated when I feel that he could be helping himself by getting out more.
Kathy, thank you for your advice...it helps to know that we aren't the only ones going through this. My husband had an awful day yesterday with pain and stiffness..they took him off the flexerall he was taking because it interacts with the Azilect....any suggestions as to what might help with the stiffness and pain? We go back to the neurologist in five weeks and that's a long time to suffer with pain such as his.
Once again, thanks for the advice and I hope things are going well for you and your husband.
You are very welcome Gap and it is really good to connect with other spouses. Sometimes just the sharing of information, reading of what others are going through can be helpful, as sometimes you can sure feel alone in this. Even though I have great co workers who show concern they really have no idea what I go through, not to mention what hubby goes through. I have a very supportive family, our sons 22 & 25 are excellent with their Dad, one still lives at home and the other just got laid off and is going to move home, take a few months off to help out around here, we have things that need doing to the house which hubby can still do but takes 5 times as long without help.
Hubby had a terrible spell this week, the meds just did not work, it was the worst he has ever been. One thing that really effects the meds is protein, we suspect that is what happened, bad timing of lunch dinner and his pills.
As for the stiffness and pain, Ibphrofine helps sometimes, sadly stiffness is part of PD, gentle stretches are important especially the leg muscles, rubbing and stretching before getting up really helps.
Hi Kathy, Thank you for your response. This is all new to me. My husband had a really bad couple of days and still is today...tremors, not feeling good, blood pressure out of whack, and just all over hurting and stiffness. His job is really, really, stressful and I think that is not helping, but not sure what to do about that because other jobs are so hard to find and he's not getting any younger and with his health, what do you do? Sometimes it is a little overwhelming. The neurologist says it's in the early stages, but I have to say, sometimes it seems much more advanced than what he seems to think. Just venting I guess. I wish there was more I could do for him, but I am trying not to make a big deal about it. Oh, well, hope you and your family are doing ok today.
It is good to connect with other spouses and I hope this continues. Maybe personal email through here would be good as well. Look forward to hearing from you and others. Gwen
Thank you very much ladies. Went to Dr today and we are going to try Azilect [different brand name here] for a month to see how things go. It is an alternative to a higher medication dosage and also is a slight anti depressant apparently. H a lot better after going on to a slow release evening tablet which keeps him 'boosted' overnight. Dr pleased, but the hardest part is getting H to believe it!!
i hope the Azilect works. My husband seems to be in a better mood more lately since starting this medicine. his stiffness and hurting are still really bad, but it seems to be helping the tremor and his mood. just keep an eye on his blood pressure, my husband's seems to be higher lately. that could be pain, but it could also be a side effect of the medicine. we try not to eat foods with soy in them, but it seems everything is made with some kind of soy product. take care and keep us posted. Gwen
I wish I could take you girls out to coffee!!! It's been a week and I can't believe the improvement with the addition of Azilect. I have a cheerful/pottering husband back and I will keep my fingers tightly crossed. Interestingly the Dr here said that it is not a medication that is used too often now. Wonder how many people are missing out and I will be asking him some questions when we return in three weeks time [he's a great Dr and answers questions etc fully, always has time]
I am so glad for you and your husband! My husband seems to be doing much better now as well! He did forget to take his medicine on Saturday and boy did it make a difference. We could see just how much it does help! I pray that it continues. I wish we could get together for coffee as well! We go back to the neurologist on the 24th so he can check how the medicine is working. Looking forward to good news. take care and keep us posted!
I have found in five + years that I have had the disease that going to diferent Doctors is a must. I have been from Sinemint to Requip. Every 2 nd. opinion has a different set of terms that go with that doctor. Be ready tp set yourself up with some stress relieving tasks, because this road as is all other progressive disorders can create a lot of stress between the coup;es relationship. It is hard for one individual to feel what or how another person feels and it frustrates us sometimes. We have ups and downs and you never know when they will appear untill that day, so making plans is hard. Riding in a car is hard for some. Finally I would read everything you can get your hands on about Parkinsons and be a strong advocate for yourself.