Now how do you/we cope with empty nest syndrome, children who won't accept the diagnosis and that constant feeling of the need to do be doing something we can no longer do?
The hardest part has been giving up my freedom with the car. First I stopped driving at night, but after three years I realized that I was a danger to myself and others if I drove while fatigued. So... I depend on my partner for most driving needs and I just hate it.
I planned to reach 56 and be free as a bird, to be taking flying lessons, riding a horse and traveling. So how do you learn to value oneself for being not doing????
I’ve asked myself similar questions. I don’t quite have an empty nest but at 16, my daughter isn’t around that much and my wife has gone back to work (which neither of us wanted). I manage to help out on the computer (paying bills and chasing down loose ends). This doesn’t come close to what I used to do.
Like you, I got full disability from ssdi. I guess we are making a contribution by supplying income to our partners but that doesn’t seem like much when compared to the plans we had before MS.
I don’t think there is much we can do about the fact that MS destroyed our plan. It seems unfair that we worked to get here just in time to get the rug pulled out. I have been trying to find peace with this. The only thing that seems to help me is to start with nothing and be glad I am alive, have a wife, and a daughter, and I’m warm etc., etc. etc. After a while the list seems pretty long and the fact that I can’t do the things that made me who I was is a little easier to bear.
I now have to create a new identity. One that doesn’t depend on things that MS can take away. I’m not there yet but I think it’s possible.
I hope this helps a little (it helped me.). I’ll keep you posted on my progress if you’d like.
Just remember you may find things in the ruins that have great value (but only if you look)
As to doing the things you wanted and can't neither can we as our daughter ran off 3 years ago and left us with a 3 year old. So we are back to square one and having to make new friends to go places with as our old friends all have grown kids not a 6 year old. We are loving every minute of it he is our pride and joy and since he is growing up with MS he likes to make the OUCH sounds when his Poppy is doing his needles and loves to remind him to take his supplements. There is always road blocks in life you just need to find a way through them.
Its challenging but not impossible to find other things we are good at.
I am what I am
Any advice would be greatly appreciated!
Glad to see that you are still checking in and that your docs are still checking things out.
I can't say that I've had the arm/shoulder problems that you're describing....I did have a frozen shoulder several years before I was diagnosed.
As far as my thermostat being off--yes, although I don't notice differences in hot/cold in different parts of my body--in my case I overheat way too easily. At the gym where I work out some have nicknamed me "the hurricane" because I have so many fans going to try and stay cool.
Can't remember if you've had your thyroid functioning checked, but if not, it might be worthwhile to ask your family doctor about it.
Hopefully some others will respond too so you can try to sort this out. Take care and keep us posted.
Hope you are doing OK. Seems this Golden Years space is not a very busy one. I read the other forums from time to time to see what new info is going around. Seems to be some new things happening. Take care, Linda S.
Not to worry. I think some of us at this golden stage (especially me) aren't all that IT savy.
Yes, it's so quiet here I frequently forget to scroll down and check to see if anyone has posted. I am doing "ok", I think, all things considered. I'm still working (fairly stressful environment), still exercising, and take an occasional trip. Last year the neuro said I was better than the year before so we'll see what he says this year.
I've been reading more about thryoid issues lately and I do think it wouldn't hurt to ask your GP about it again. From what I've read it's a tricky thing to get "right" and if it's not "right" can result in a lot of symptoms.
I hope you'll keep checking in and are able to get to the bottom of the symptoms you're experiencing. It can be so frustrating sometimes--is it this? that? or?
Do take care
This is something I intend to do after reading the book The MS Solution by Kathryn R. Simpson.I've been reading more about thryoid issues lately and I do think it wouldn't hurt to ask your GP about it again.
Overall, the book has good ideas, especially about checking hormone and vitamin/mineral levels. I take exception to her statement on IGF-1 on pages 141-142.
I prefer to believe the research reported inGrowth hormone production is highest at puberty and declines progressively after age 21. Made in your pituitary, it stimulates bone and organ growth. It causes increased production and release of a substance called insulin-like growth factor 1 (IGF-1), which travels to target tissues such as bones, organs, and muscles to trigger growth and repair. It has also been shown to promote growth of myelin and nerves.
It's another one of those areas that deserves more examination!the recent Winter 08-09 issue of Momentum, publication of the NMSS (I am generally skeptical of this group and its projects), which addressed this idea with the following:
"The growth factor IGF-1 had shown some success in promoting myelin formation, so a Society-funded team led by Stephane Genoud, PhD (The Salk Institute, La Jolla, Calif.), injected it into mice with EAE. The injections actually worsened the disease. (Journal of Neuroimmunology 2005; 168:40-5) Such failures are important to pinpoint before they affect people with MS in clinical trials."
Here is the abstract of the work mentioned:
1: J Neuroimmunol. 2005 Nov;168(1-2):40-5. Epub 2005 Aug 24. Links
Targeted expression of IGF-1 in the central nervous system fails to protect mice from experimental autoimmune encephalomyelitis.Genoud S, Maricic I, Kumar V, Gage FH.
Laboratory of Genetics, The Salk Institute, 10010 N Torrey Pines Rd, La Jolla, CA 92037, USA.
Insulin-like growth factor 1 (IGF-1) has been identified as a critical molecule in the induction of myelination in the central nervous system (CNS). Systemic injection of IGF-1 has been shown to have a varied and transiently protective effect on the clinical course of experimental autoimmune encephalomyelitis (EAE). Since systemic IGF-1 can also modulate peripheral immune lymphocytes, we examined whether a sustained and local delivery of IGF-1 into the spinal cord would have any influence on the chronic course of EAE in C57/BL6 mice. The capability of adeno-associated virus (AAV) to be retrogradely transported efficiently from muscle to motor neurons of the spinal cord was used to overcome the difficulty routinely encountered when attempting chronic delivery of molecules into the CNS. We demonstrate that AAV-mediated delivery of IGF-1 in CNS did not have any beneficial effect on the clinical course of EAE. Injection of AAV-IGF1 after induction of the disease worsened the clinical symptoms. Furthermore, CNS expression of IGF-1 did not affect the pathogenic anti-MOG T cell response, as examined by proliferation and cytokine secretion. Thus, enhanced expression of IGF-1 in the CNS during inflammation does not have a significant effect on myelination. These data have important implications for the potential use of IGF-1 in the treatment of multiple sclerosis.
PMID: 16120466 [PubMed - indexed for MEDLINE